Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Monday, March 27, 2017

D is for... too much toDay

3.27.17

And just when we think we can predict...
Ha Ha laughs life...


Got up early, took some Dex steroids, as that's what I have done to begin pre-meding for Tuesday's Darza infusions. I haven't had any relief all week from the ouchy fever-feeling nerve pain. I just feel awful. My thinking: Dex to the rescue! No I haven't been actually "sick", thank goodness! My body just feels sick, like when one has a fever. Ouchy skin. And the fatigue. Ugh the fatigue. I just feel sick all the time now, but I am not sick. Not flu sick. Not stomach flu sick. Not sinus, cold sick. Just tired, fatigued, ouchy fever sick, WITHOUT the fever. Yippee Dex steroids to the rescue.

Got up, took 4 little pills with a Vanilla Ensure, and water, and was going to go back to sleep for an hour. I knew I didn't have much time this morning, as I was due downtown at 11:00 for my SCT Dr appointment.  I just wanted the roids to kick in, and make my achyness disappear. And then it happened. My stomach started rumbling like it hasn't rumbled in a long long time. Hmmm, what's this feeling I mused. Pomalyst, are you becoming my Revlimid? Are we going to have GI adventures again? Will I be prevented from going places due to crazy unpredictable diarrhea? Deja Vu 2013, 2014, 2015? No, all is well, false alarm. I still have a bit of time to "relax" before getting up and leaving.

Oh, yea... surprise, surprise... hello GI issues again. Hello diarrhea that prevents me from leaving the house, getting on the freeway and getting to my Dr appointment. Ha Ha, laughs life. You'll never be able to predict much of anything ever again, laughs life at me, while I'm in the bathroom, wondering what the heck... Later, I call my Dr's office and let then know my situation. I'm offered a phone consult appointment, which I was very happy to accept. I really do have the best care!

Dr S and I discussed my labs, new treatments, new meds, new side effects, etc. We discussed "quality of life" issues. We discussed my options. We discussed Velcade vs Pomalyst with Darzalex, Dex. Who knows which is causing what. Perhaps, with all the side effects, "stretch out Dex AFTER the Darza infusions", Dr S suggests. Maybe not take it before, but utilize the 40mg dose over more days, since the Dex seems to really help alleviate these new awful, painful, debilitating side effects, we discuss back and forth. Done Deal! I'll talk to my chemo lab pharmacists tomorrow and my local Dr, if she is available.
Dex took it's sweet time kicking in, and still really hasn't given me the "kick" I'm used to, but the awful pain has subsided. I think Dex will be the Darza side effect minimizer. I was slow to do much of anything today, due to incredible fatigue. I had to "force" myself off the couch and outside to move a bit, and I finally ate a baked potato and left late for the lab for my blood tests. Everything is an effort lately. Not the Julie I know... This has got to change... I'm not an inside couch lounger. When I have these lab results I will post them. But it does look like Darza is effective at wrapping it's self into and onto the cells, slamming myeloma's power! I have committed to "suffering", if Darza is my new Elixir. I'll figure out a way to "med up", "drug up", meditate, "ignore it", etc, and make this work. Myeloma, you have ruined my life, but I am forever grateful for the life I have...


Not long after my Dr phone consult, I found out another one of my local myeloma friends passed away today. So shocking. I had met Lisa and her husband late last year at the chemo lab. She was somewhat newly diagnosed. June or July 2016, I think. I told them my story and my successes. I gave them hope and tips. She had many complications, had been in and out of the hospital, had to do dialysis, but they were very optimistic and looking forward to getting to and beyond the SCT process. She had many success milestones. She made it to City of Hope for her SCT. Today was 11 days after her SCT infusion. I don't know what happened. But I do know my heart is broken for her family. For her husband and young adult children. So incredibly sad. I just don't understand. I will never understand "Why Bad Things Happen to Good People"... Why Myeloma, Why?


D is for Darzalex side effect surprises
D is for Dex steroids to the rescue
D is for Done Deal, I'll Do it
D is for Deja Vu Diarrhea
D is for Dang, really, here we go again
D is for Dr appointment missed
D is for Dizzy and Ditzy
D is for Done with all this insanity
D is for the tragic Death of a myeloma friend toDay





Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can


Saturday, March 25, 2017

Thanks Darza- 4 days later... I still feel Yucky, and You're Sabotaging my Party

3.25.17

Dear Darzalex,

Thank you for improving my myeloma status, and pummeling those invasive no-good cells, but what's going on here?! Each day since Infusion-Day-Tuesday, I have felt yuckier and yuckier... I feel "flu-ish", achy, so extremely fatigued, tired, headachy, dizzy, blurry and so incredibly ouchy, without relief or a break. I thought Velcade was "the" culprit, and kicked that treatment outta my life last week.

But Darza, perhaps Velcade is only partially responsible for my "misery", maybe exacerbating your side effects? Maybe the ouchy nerve pain is really you Darza, afterall? Maybe you are the cause of all these yucky side effects? Guess I underestimated your powers. I don't have the extreme debilitating, burning nerve pain from earlier in the month, but these current super ouchy-achy-flu-like symptoms are just doing me in. Is this you Darza? Or Velcade's delayed 2nd life? Or is this you Pomalyst, after just a few pills? I know the power of killing myeloma is in the multiple "agents" combined together, but this "torture" supports my previous rants about being on one chemo/immunotherapy at a time, so I can isolate which side effects are from what. I meet with my SCT Dr on Monday March 27, so we'll see what his take is on all of this is...
C'mon myeloma, can't you cut me a break... it's my son's birthday today.

Happy Happy Birthday to my amazing son Scott! 



Throwback to better times...


=====================

What are the possible side effects of DARZALEX®?
DARZALEX® may cause serious reactions, including:
  • Infusion reactions. Infusion reactions are common with DARZALEX® and can be severe. Your healthcare provider may temporarily stop your infusion or completely stop treatment with DARZALEX® if you have infusion reactions. Tell your healthcare provider right away if you get any of the following symptoms:
    • shortness of breath or trouble breathing
    • dizziness or lightheadedness (hypotension)
    • cough
    • wheezing
    • throat tightness
    • runny or stuffy nose
    • headache
    • itching
    • nausea
    • vomiting
    • chills
    • fever
  • Changes in blood tests. DARZALEX® can affect the results of blood tests to match your blood type. These changes can last for up to 6 months after your final dose of DARZALEX®. Your healthcare provider will do blood tests to match your blood type before you start treatment with DARZALEX®. Tell all of your healthcare providers that you are being treated with DARZALEX® before receiving blood transfusions.
  • Decreases in blood cell counts. DARZALEX® can decrease white blood cell counts which help fight infections and blood cells called platelets which help to clot blood. Tell your healthcare provider if you develop fever or have signs of bruising or bleeding.
  • tiredness
  • nausea
  • diarrhea
  • shortness of breath
  • fever
  • cough
  • muscle spasms
  • back pain
  • cold-like symptoms (upper respiratory infection)
  • nerve damage causing tingling, numbness or pain
  • swollen hands, ankles or feet
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of DARZALEX®. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

======================

Or is it you POMALYST?

POMALYST can cause serious side effects, including:

  • Low white blood cells (neutropenia), low platelets (thrombocytopenia), and low red blood cells (anemia) are common with POMALYST, but can also be serious. You may need a blood transfusion or certain medicines if your blood counts drop too low. Your blood counts should be checked by your healthcare provider (HCP) weekly for the first 8 weeks of treatment and monthly after that.
  • Severe liver problems, including liver failure and death. Your HCP should do blood tests to check your liver function during your treatment with POMALYST. Tell your HCP right away if you develop any of the following symptoms:
    • Yellowing of your skin or the white parts of your eyes (jaundice)
    • Dark or brown (tea-colored) urine
    • Pain on the upper right side of your stomach area (abdomen)
    • Bleeding or bruising more easily than normal
    • Feeling very tired
  • Severe allergic and skin reactions. Call your HCP if you have any symptoms of an allergic reaction, including: swelling of your lips, mouth, tongue, or throat; trouble breathing; or skin reaction.
  • Dizziness and confusion. Avoid taking other medicines that may cause dizziness and confusion during treatment with POMALYST. Avoid situations that require you to be alert until you know how POMALYST affects you.
  • Nerve damage. Stop taking POMALYST and call your HCP if you develop numbness, tingling, pain, or a burning sensation in your hands, legs, or feet.
  • New cancers (malignancies). New cancers, including certain blood cancers (acute myelogeneous leukemia or AML) have been seen in people who received POMALYST. Talk with your HCP about your risk.
  • Tumor Lysis Syndrome (TLS). TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure and the need for dialysis treatment, abnormal heart rhythm, seizure, and sometimes death. Your healthcare provider may do blood tests to check you for TLS.
  • The most common side effects of POMALYST include tiredness, weakness, constipation, nausea, diarrhea, shortness of breath, upper respiratory tract infection, back pain, and fever.
  • These are not all the possible side effects of POMALYST. Your HCP may tell you to stop taking POMALYST if you develop certain serious side effects during treatment. Call your HCP for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

What other important information should I know?

  • Blood clots in your arteries, veins, and lungs, heart attack, and stroke can happen if you take POMALYST. Most people who take POMALYST will also take a blood thinner medicine to help prevent blood clots.
Before taking POMALYST, tell your healthcare provider:
  • If you have had a blood clot in the past
  • If you have high blood pressure, smoke, or if you have been told you have a high level of fat in your blood (hyperlipidemia)
  • About all the medicines you take. Certain other medicines can also increase your risk for blood clots
Call your healthcare provider or get medical help right away if you get any of the following during treatment with POMALYST:
  • Signs or symptoms of a blood clot in the lung, arm, or leg may include: shortness of breath, chest pain, or arm or leg swelling
  • Signs or symptoms of a heart attack may include: chest pain that may spread to the arms, neck, jaw, back, or stomach area (abdomen), feeling sweaty, shortness of breath, feeling sick or vomiting
  • Signs or symptoms of stroke may include: sudden numbness or weakness, especially on one side of the body, severe headache or confusion, or problems with vision, speech, or balance

===================

I just can't tell if I am getting better or worse. These side effects are really throwing me a curve. And to think I "complained" for years about the "volcanic, surprise" diarrhea from Revlimid. What's that ole saying... "be careful what you wish for"!


Happy Birthday to my amazing son!
We were just so cute back then! 


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can




Wednesday, March 22, 2017

Good News! Darza Dominates!

3.22.17


Looks like Darzalex (with Dex, Velcade) is doing it's job and pummeling myeloma!
(Mayo Clinic Recommendations for Myeloma Therapy at Relapse)
Just saw my IgA and M Protein levels! 
UNBELIEVABLE!!!


M Protein was 3.60
Now: 1.35
Normal range = Zero
====================
IgA was 3750
Now: 1770
Normal range = 70-400

So here's the quick story: 
Tuesday March 21 was Darzalex infusion #4.
I let my Dr and Chemo Pharmacist know I just couldn't do the Velcade shots anymore, if Velcade was the culprit causing me the horrific "nerve pain" I was attacked by this month. It's a full body super ouchy painful feverish feeling, like knives stabbing me, nails scraping my skin, pain like a very high fever, but without a fever. Went on for days and days and days. So we agreed to nix Velcade and try Pomalyst again, but at the 3mg dose, hoping it won't bring my CBC's to Neutropenic levels again. 

BUT- that ^ conversation ^ was PRIOR to seeing my recently resulted M-Protein and IgA levels! They just came in today. So now that we can see the AMAZING RESULTS... I (think) I would be willing to suffer through Velcade, if Pomalyst doesn't show the same great downward results. But we won't know that for another month, as I'll begin Pom tomorrow. But at least we do know Dex, Darza and Velcade does work for me.
I am just so relieved that these meds and my body are currently stronger than the myeloma cells attacking! Yippeee ... my spirits are renewed and I am back to feeling my positive optimistic, hopeful self again... at least for now...


HAPPY dance song!!!


Click here for an informative Darzalex video with Dr Durie!


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can

 

Friday, March 17, 2017

Forward March Darza, Velcade, Dex

Hello 3.17.17
Here's my story in pictures.

 
Some days yes, most days no...
I used to be so "strong",
but I find continual "pain" debilitating...


So many more diagnosed every day!
Just met another local to me...
Where are you coming from Myeloma?


Forward March Tuesdays-
Hello 40mg Dex steroids, bag of Darzalex, bag of Benadryl, Velcade shot

These are great when I get tired of swallowing pills-
Helps calm chemo reactions, and so amazing-
I have ZERO environmental/food allergies
since my July 2010 SCT!

5 hour Darzalex infusions-
So far so good, thank you premeds
and a fantastic chemo lab staff for smooth sailing
Jr strength used to work out ok... 
But these days-
I need to be an "Adult" and up the dose 
with Adult strength pills, 
as there's a new side effect in town...


Several weeks ago, Velcade sent me AWFUL, OVERWHELMING NERVE PAIN! 
Different than the typical numbness and tingling from traditional Neuropathy..
Hit me 2nd Velcade Darza infusion- 
Just unbearable pain like I've never experienced
Feels like a PAINFUL skin fever, sunburn or raw skin.
It's a high fever feeling, but without the actual fever. 
It's the flu feeling without the flu.
Burning sensitive ouchy skin, inside and out.
Clothes feel like needles
My bed is like sleeping on nails
So awful, so debilitating :'(( 
Stealing my precious time away, 
Draining my optimism and strength,
Stealing my days away,
Stealing my life away,
Making me question everything... 

Then fortunately,
Whew! Mondays and Tuesdays Dex to the rescue!
I take 40mg per week,
20mg Mon, 20mg Tues
as premeds for Tuesday infusions 
and finally, some overall relief.
It's amazing to feel a bit like my ol self again.
What a crazy, amazing medication...

------
And on a happier note:
last Tuesday after infusion-
before my crash- 
Alissa brought us this,
Thank you Dex for a day or two of semi normalcy.

Not often though, as I'm back to counting calories-
I'm not going to let 
Dex steroids make me chubby! 


Me on the one good day


I'll take labs soon (when the nerve pain calms down and I can breathe and function). Truly, dealing with this new side effect is overwhelming me. I'm not used to 24 7 pain. I'm not used to feeling so awful, so "sick", for most days a week, every week, every month... Seriously, imagine feeling sick weekly and knowing in advance you will feel sick weekly... so awful. But I endure, as it will be interesting to see how this new cocktail of Darzalex, Velcade and Dexamethasone is attacking myeloma. Trying to tolerate the nerve pain torture, in hopes the meds are pummeling the cancer cells... if not... what's next?? ...
I don't think I can do this...


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can


Tuesday, March 7, 2017

Ok Darza Infusion #2...I'm Coming for You

3.7.17  
(UPDATED 3.8.17)

Darza, Darza, Darza... I hope we're going to be friends!
Infusion #2 today, Tuesday March 7, 2017
Yep, I survived last week's Daralex's Initial First (2 day) infusion and this first week of post infusion- "let's see what happens", and not too awful side effects :))

(See my previous 2 posts for these initial Darzalex details)

In prep for Darza Infusion #2 today, I took 20mg Dex roids Monday March 6 to begin the pre-med-ing and getting my body ready (or calm lol) for infusions. I then took the second 20mg Dex roids first thing in the morning, before leaving for my Dr appointment and infusion. I find having the Dex in my system in advance, really helps prevent infusion reactions. (I am still on the 40mg of Dex steroids per week, so splitting 20mg + 20mg seems to work really well.)

Darzalex is infused GRADUALLY and SLOWLY the very first time to prevent extreme side effect reactions. I'm still processing how impressed I am with my body's minimal reaction, and I do attribute this to my, and the lab's, pre-med-ing and careful monitoring. Infinite Thank you's to my entire medical team!



DARZA INFUSION #2- SUCCESS UPDATE
BUT WAIT, THERE MORE! MORE TO THE MIX AGAIN! 

So I arrived around 10:30am for my Dr appt with Dr P. We discussed my first Darza experience, my numbers, and noted that my CBC's were up a bit. I attribute this to the 2 days (20mg + 20mg Dex roids lol), as my blood stats seem to increase when I premed with Dex and then take labs. We discussed how well I did with my first Darza infusion, with my "textbook reaction", that was quickly controlled. Not to minimize it in any way, I just had thoroughly prepared and informed myself physically and mentally, so I knew what to expect, and act on immediately, before things got out of hand (see my previous posts for details).

Dr P then let me know she really wants to add Velcade or Pomalyst back in, as research and Darza protocol is all about doing "multiple agents" together... Ya, Ya, I know... but eekkk... I've barely gotten used to this "grueling" allll day infusion, not to mention possible crash side effects, and you all know I am not a fan of adding multiple treatments together until I know which is doing what, and what to expect from each. I know... I'm not the standard chemo patient... but ugh, after 7 years of this, QUALITY OF LIFE is important to me, and my Doctors know this. So back and forth we went, discussing all options. She is really concerned how Pomalyst brought my CBC's to "Neutropenic" status, so we agreed to add Velcade back into the mix. But then she informed me that study and Rx protocol is Velcade adminstered on Darza infusion day and then 2 days later! Whhhaaattt.... noooooooo! Ugh! I don't mind coming back, it's just that I know I will be "crashing bad" on Thursday, and just don't want to get on the freeway, not knowing how bad my symptoms will be, not to mention she and the chemo lab pharmacist let me know the Velcade Rx standard for this cocktail is higher than what I was receiving before. Ugh!! Back and forth we went, and I reluctantly agreed, as I know my IgA and M Protein and other MM stats are ridiculously high now... some back to 2009 diagnosis status! I know they have my best interests here, but I just need some semblance of "normalcy" at least for a few days per week. I'm not looking for a "magical cure" status, as I've always known myeloma is incurable. I just want the meds to give me lower numbers, and "stable disease" status.

So I "reluctantly" agreed to the new treatment plan, and off I went to premed with Benedryl and Tylenol, thinking let's get that Darza juice into me and get to killing those waste of time cancer cells. As I waited for the premeds to settle in, I noticed 2 of my chemo lady pals across the room from me. One with myeloma, one with another cancer. Both such lovely ladies! Zoom, let's go IV stand, time to chit-chat consult, as the myeloma lady was doing Darza also, and was a month ahead of me with her treatments. Long story short, she too was offered the Darza + Velcade (2x per week) + Dex, triplet cocktail. Oh boy, did we talk about that for a while. And talk, and laugh, and exchange stories about side effects, and life, and family, and myeloma's ridiculous life changing limitations! This sweet lady let me know she had made the decision to NOT do the Velcade 2x per week, and only agreed to Velcade 1x per week with the Darza and Dex. The side effects were just too much for her. Oh boy... confirmation of my thoughts. I know, we're all different, our myeloma is different... but dang it... I can only "suffer" so much in the process of treating this monster.


Can you guess what happened next?
Yep, as my Nurse continued to monitor me, increasing my IV flow from 50m/L to 100m/L... she brought over my Velcade shot, hung it on the IV stand for later and asked me about scheduling my 2nd shot for Thursday. Ok, ok, scheduled, I accept, scheduled in the system for Thursday. I'll try to come back... ugh side effects... ugh higher dose... ugh my looming crash... ugh into the unknown again... ugh ugh ugh... Noooooooo! Nope! Not! I thought it, and said it... "I'm not going to do this!" Nope Nope Nope! Sorry studies and protocols, not going to do this yet. Dang it. Let's wait to see how I respond to Darza, ONE Velcade shot and Dex. I just don't like bombarding my system if it may not be necessary. I know, this is not what standard medical practice is. Hit it hard, slam those cells, wrangle in the cancer hard and fast. That's the norm. Nope, Nope, Nope, I like to wait and see. See if lower dose, minimal meds can do the trick. So I shocked my sweet nurse with, "Sorry, please cancel Thursday's 2nd infusion, I'm only going to do the one Velcade shot with the Darza on Tuesdays." Take that myeloma! She was surprised, asked me several times if I was sure, and then cancelled Thursday for me. Yep, even though my Doctors and Pharmacists may "know what's best for me medically", they, fortunately have not experienced those yucky awful crash days us cancer patients do.

I accept the triplet concept. I really do. 3 different agents fighting myeloma's unrelenting mutations. I get it, I really do. So let's get this Velcade shot in. Let's see how my system handles this new cocktail slam. Get er done. IV me up, shoot me up, let's do this. Being a 7 year "myeloma veteran", I have little vanity anymore in the chemo lab. I let my nurse "use me" to demonstrate to another another patient, "how to inject shots in to "belly fat". We all laugh. I talk about what Dex steroids did to my body. I talk about how I am carefully counting calories now. I talk about how I am no longer saying, "F cancer, I'm going to eat whatever I want, whenever I want".. I don't want to be a chubby steroid cancer patient. Ok, some days I do still say "F cancer", and eat a few extra ginger cookies or whatever my after chemo "metal mouth" craves lol. Velcade shot in, humor shared. This is my life.

As my chemo lab pharmacist was leaving for the day, I called out to him and told him my decision about NOT doing Velcade 2x per week and cancelling my Thursday appointment, and he said, "Noooo way Julie, I'm just soooo shocked, so surprised"... "Not"!! ... wink wink!! He knows me too well lol!! Omg so funny!! "Sorry to be so complicated Dr Henry". "I'll sign a "waiver" if need be, that I "changed" the standard protocol for this regimen"... lol, he laughs, "not necessary Julie"... "see you next week".


The rest of my day went ok, chatting with other patients, sharing cancer diagnosis stories, life stories, and the forever feeling of being incredulous that we are in the circumstances we are. Patients came and went, and there I was, hour after hour after hour. Hourly increases of Darza flow from 50m/L to 100m/L to 150m/L to finally 200m/L. So far so good. Body is tolerating Darza fine today! Just tired, but wired. Dex and Benadryl battling it out, inside of me. Tried to dooze as some patients do, but can't. Too many thoughts in my head, too much to think about, too much to process. The lab is clearing out. Only one or two patients left. I still have about an 2 inches left of Darza. The lab closes at 5pm. I feel bad for my nurse. I want her to go home on time. I tell her it's ok to increase the flow. Let's go Darza. It's 5pm. She's squeezing the bag. Just a little left. I'm doing fine. This is surreal. I'm the only one left in the lab. The other nurses leave, my nurse patiently stays and we chit chat. Darza's almost done. It's after 5:10, 5:15. Darza's finally done! Switch bags. Get hydration in those veins. Lights out, everyone is gone. I'm exhausted, but so shocked I did so well. Finally, safe to go. My nurse confirms I am ok. Yes I am ok! Thank you sweet lady for caring as you do, and taking such amazing care of me! We walk out together. I apologize continually for how late things went. For sure next Tuesday's infusion appointment will be earlier, as I don't have a preceding Dr appointment.

I get to my car. I'm a little dizzy, ditzy, woozy. I should have let someone drive me there and back. But just my nature to not impose on anyone. I should. I'm a terminal cancer patient. I'll be doing this drill forever. I keep thinking I won't. I can't accept this. What happened to me. This can't be for real. This status will always be so unreal, surreal to me. I shake my head, trying to process. I drive carefully home. Fortunate for traffic today. Keeps the speed down. Focus Julie, focus. I'm thirsty, but don't want to worry about "not making it home". I'm a little nauseated... or am I hungry. That's right, I only had a vanilla Ensure with my Dex steroids at 7:30am, then some graham crackers with my premeds at the lab, then water, and water with cranberry juice, and one fig bar. Am I hungry or nauseated? Ok, almost home. So much to process, so much to think about. Have I made the right decisions? Am I foolish for not following protocol? Should I be a typical, accepting cancer patient? When am I going to accept the "seriousness" and "aggressiveness" of my diagnosis? Nope, I need to be comfortable. I need to treat my body as I feel comfortable. I know my body. I respect the medical advice. Am I wrong for not treating per protocol? I arrive home. Relieved to be home. it's after 6pm. I used to come from work around this time. How my life has changed. What happened to my life 7+ years ago. When will I wake up from this ridiculous nightmare. 




Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!  

Thursday, March 2, 2017

Darzalex Day 2!

3.2.2017

Darzalex Day 2 update:

I returned to the chemo lab bright and early on Wednesday March 1, pre-med'ed with 8mg Dex steroids, which I took at home prior to leaving. I have found that pre-meding in advance of my chemo infusion appointments really helps get a head start on preventing treatment reactions. I did this with Kyprolis last year, and my recent Velcade shots this past month, and it was very successful in preventing any crazy infusion side effects. Since I am taking 40mg of Dex per week, I usually split this dose between 2 days, but with this new adventure with Darzalex, I was advised to pre-med on Monday with 8mg Dex (the day before my first Darza infusion), then take 20mg before coming to the lab on Tuesday, Day 1 infusion day, then take 8mg Dex again on Day 2 infusion day, then end with another 8mg today, for a total of 44mg Dex this week. My body is exhausted, yet still buzzed, so I hope to eventually sleep well the next few days and just reeeeelaaaaaxxx and enjoy my infusion success!


I am thrilled to report that Day 2 of Darzalex was absolutely uneventful! After all the wondering and worrying I went through accepting this medication change, this experience went incredibly smooth. As you know, I read and inform myself continually about myeloma, treatments, medications, research, trials, etc, so I am very aware of what potential and possible side effects I may experience. I would classify my Day 1 Darza infusion reaction as a "mini textbook reaction", that was handled expertly and immediately. As a result of proper pre-meding, my Nurses' quick responses, and the Pharma staff right there, next to the lab, I was able to get the predicted side effects under control quickly and move forward without much drama. Yes a bit scary at first, but I knew what was happening, and we dealt with it fast and expertly.

To recap, I first experienced face flushing, then a sudden somewhat intense headache, raspy voice, slight cough, slight difficulty breathing, and slight wheezing.  I felt a bit weak, no energy to talk, as catching my breath was a bit difficult.

Since I previously had environmental and food allergies (which ironically completely disappeared after my 2010 stem cell transplant!), I was very familiar with the listed Darzalex potential respiratory side effects and knew what was happening as it was creeping up on me. I'm actually forgetting now, but I believe they gave me another bag of Benadryl, offered me Ativan and a Hydrocortisone shot (which I declined both, as I didn't feel my reaction was that dramatic), and most importantly, I suggested we just stop the infusion for a while and see what happens. Magic! Symptoms disappeared in about 30-40 minutes, and we resumed the drip at the slower rate of 50 mL/hour, then gradually increasing according to prescribing protocol of 50mL/hour of: 50, 100, 150, 200.

We stopped the speedy (200mL) rate infusion around 4:00pm, so I could be monitored before the lab closed at 5:00pm. I felt ok, of course exhausted from all the Benadryl, yet buzzed from the all the Dex steroids. Went home, felt ok, did not have any other reactions, other than tired, thirsty, a bit nauseated then hungry, a headache, but truly a very surprisingly uneventful evening.

Day 2 began with my 8mg Dex steroids I took at home before leaving for the lab, then the Benadryl drip, lower dose Tylenol (as I didn't feel like swallowing 2 pills so early in the morning and asked if I could use my low dose "meltaways" I brought, lol) and then the 30-45 minute wait to get those meds into my system. Then hello Big Bag of Darza, let's go! I was surprised how much was left in the bag from yesterday, as I had thought I received more. But with my early blood test repeat, the slight wait for those results, the standard premed wait, and the reaction wait, I guess I didn't "drink" as much Darza as I had thought I did on Tuesday, Day 1.

Note I was in bed "F" lol :))

I don't want to "jinx" myself, but things went great Day 2 and I went thru the remainder of the Darza bag at full speed ahead, with NO DRAMA, no reactions, no side effects! I moved through the various infusion rates of 50, 100, 150, 200 quickly, with NO reaction. I was truly shocked how well I was doing, and how quickly my bag emptied at the turbo rate of 200mL/hour!

I always wind up meeting a fellow chemo patient and chatting the time away, so I can't report as many exact details of my infusion experience, as we were busy talking about our respective cancer types, treatments and life changes. Sadly, this nice lady I was next to, wound up with a lousy reaction to her chemo, and I was not paying as much attention my situation as I was with hers. She was having a lot of difficulty, and I quickly summoned the nurses for her. She wound up needing oxygen, various shots, different IV bags, and went from feeling ok earlier to really crashing. I felt so bad for her, especially since I was doing so well, and had expected I would be the "drama queen".

So that's my undramatic, dramatic Darzalex story! Can you believe it?! What have I learned from this? Well the same lesson I muse about here often, regarding each medication change I've made lol. I thoroughly inform myself of the details and possible "worst case scenarios" so I am fully aware of "what could possibly happen", but I tend not panic that the worst will actually happen to me, and it often doesn't :))


 I was thinking about it earlier, how many different myeloma meds I've done:
~ Revlimid, at 5mg, 10mg, 15mg, for initial treatment prior to SCT
~ Dexamethasone, from the low of 10mg weekly, to as much as 40mg per day, 4 days on, 4 days off
~ Cytoxan- IV, one intense all day dose in prep for stem cell harvest (and this one I did get terribly sick from, which scared me for all the others. It was like having the 24 hour intestinal bug)
~ Neupogen, to build up the stemmies prior to harvest
~ Melphalan, 2 days, high dose, prior to stem cell infusion at City of Hope July 2010
~ Revlimid, low dose 5mg for remission maintenance, 18 months
~ Revlimid, 5mg, 10mg, 15mg after coming out of remission mid 2013, until late 2015
~ Kyprolis, standard dose, late 2015 thru late 2016
~ Pomalyst 3mg, 4mg, just recently, Nov 2016 - Feb 2017
~ Velcade, standard dose, just recently, mid Jan 2017 - Feb 2017
~ And now Darzalex!

Whew that's a lot of meds... not mention all the other supportive ones such as Mepron, Iron, Acyclovir, Aspirin, Benadryl, pain meds, stomach upset meds, GI issue meds, lol, etc... And to think prior to my myeloma diagnosis, I hardly took any meds... wow...

So that's my story and I am still shocked and surprised, not to mention so grateful, with my Darzalex infusion success. 


I almost forgot to mention, that at the end of Day 2 infusion I asked if my recent myeloma marker labs had come in, and sure enough, they just had! I was shocked to find out that in the 2 weeks off Pomalyst and Velcade, prior to starting Darza, my IgA shot up from 3270 to 3750 and my M Protein went from 2.71 to 3.60! Wow!! Ok, I am convinced my myeloma is "aggressive", as my Doctors have been telling me all along... Get in there Darza and do your magic!


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!  

 

Tuesday, February 28, 2017

Darzalex Day ONE!

Tuesday, March 28, 2017
Here we gooooo! It's Darza game time! Here's my quickie update:

Funny let's get to the chemo lab on time story-
As my personal "Uber" driver son Scott was taking me this morning to my Darza appointment, he switched safely, but illegally, into the carpool lane, cutting over the double line. (Insert mom lecture here.) Minutes later, a CHP with full lights blaring comes roaring up fast behind us, but back a bit, giving Scott time to quickly get out of the HOV lane, and time to dart (safely and evasively) into other lanes. (Insert another mom lecture here!) Omg, we're "dying" laughing here, and I'm reprimanding my 30yr old son! We're thinking Scott's going to get a ticket for an illegal lane change, not to mention, we're going to be late to my appointment. Here goes the beginning of my Darza drama day, and we've barely left the house.
We're both "dying" laughing and cussing, as he's darting in and out of lanes, trying to ditch the CHP! But thank goodness, it turns out Mr. CHP could care less about us, buzzing right past us, towards an accident on the overpass, not after Scott!! We're so relieved he wasn't after Scott, but now we're going to be late to my first appointment from this accident closure in front of us! Seriously! Can't believe this! Turns out, Mr CHP was headed to the EMS activity in the carpool lane, the lane Scott had quickly gotten out of, so we were safe, and not involved in the freeway closure! What a crazy, "I'm going to kill you son" start to the day!


But wait, there's more!
We finally arrive at the chemo lab, check in, meet with my Dr, discuss the plan and my blood tests, then boom! she tells me my WBCs are too low to start today's Darzalex infusion! Omg! Seriously! All this mental prep, and now to be sent home?!?!?! Nooooo!!! Down to the lab I go. New blood tests STAT!! ... Back to the chemo lab to wait and wonder if my levels are better and I can finally move forward. Soon, Stat labs in, and it's a GO, as my CBCs have risen (thank you Dex Roids for pumping me up!)


But wait, there's more!
First needle stick, into a dead vein from so many previous Kyprolis IVs, and I am a bit dehydrated, as I hardly had a chance to hydrate, leaving the house so early for this allllll day infusion! Omg life, seriously?! But 2nd needle stick, different hand, good to go! ... Finally hooked up, pre-meding with MORE Roids, Benadryl, and Tylenol. (I had previously taken 8mg Dex steroids on Monday, and 20mg Dex this morning at home.) Now it's hurry up and wait for the meds to take affect. Before we know it, it's Darzalex go time!! Premed'd up, and hello Darza into my veins. This life never ceases to entertain me. As one of my friend's posted, my life "Mr Toad's Wild Ride". Yep!
Per Darza infusion prescribing literature, the worst reactions, if they happen, occur about 2-4 hours in.
 
And sure enough, as predicted, like clockwork, the infamous Darza reaction creeps up on me:

Darza was infused at standard protocol. Scott and Ashley were my "reaction monitors" for the first half of the day. Initially, all seemed rather uneventful, so I told Scott he could run his business errands, and Ashley would stay and monitor me.


But not long after he left, about an hour and half, 2 hours of Darza, here comes the reaction just like clockwork. I'm just such a textbook patient. The predicted reaction of chills, cough, headache, scratchy throat, flushed face, body aches, sneezing, sore throat, wheezing, and I felt blah, no energy to talk and felt overall weird. The reaction crept in, one side effect at a time. I let it ride for a bit to see what direction it would go, but Ashley summoned my nurse, as I knew the predicted Darza reaction was happening! I've had some asthma and allergies all my life prior to my stem cell transplant, so I know the early signs. The nurse took my vitals, listened to my wheezy breathing and we stopped the drip for 30-40 min. They offered me a various meds to treat the side effects, but I didn't think I was that bad off, and wanted to see what would happen if the Darza drip was just turned off for a bit.


Sure enough, that did the trick and we started back after my reactions subsided. We did a graduated slow drip, medium drip and then full drip. I think the rates are 50, 100, 150, 200. And after the no-Darza break, I surprisingly did just fine! We did the final hour at the speedy 200 rate! My 90 year old, very healthy I must add Dad, stopped by too, then they all left for work. Second shift "reaction monitor" daughter Alissa came, and thank goodness the rest of the infusion to 4:30 was slightly uneventful, at full speed ahead. Yippee!! I didn't get through much of the bag, so we'll see what happens tomorrow...


So what's my final status today: Tired, achy, headachy, woozy, soon snoozey, a tiny bit of nausea, but relatively ok. I was too medicated to drive home myself as predicted, but honestly, I was in such good shape compared to what I had anticipated. So proud of my body today! If that's all Darza sends my way..... I'm in love with you Darza! (And look at this, I'm in bed "F" aahahhaa!)


So it's back to the chemo lab tomorrow to finish the rest of the bag, as I only got through less then  half.  So.Same.Show.Tomorrow.  I'll premed again with 8mg Dex roids, and then med up more there, before the Darza infusion begins. I totally trust my chemo lab staff and so appreciate all their attentive care! Nurses and Pharmacists right there for everything and anything. Doesn't get better than that!

Thank you so very much for all your support, concern, cool comments, and healing prayers!


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!  

 

Monday, February 27, 2017

Hello Darzalex, Please Be My Friend

2.27.17

Wellllllllllll... here we go...
The long awaited treatment change to Darzalex is looming tomorrow, Tuesday, February 28, 2017, first thing in the morning!
My hope is for NO side effect DRAMA on this first infusion.

For those familiar with Darza, you KNOW what I am referring to.
For those unfamiliar with Darza, truth is, many (most) myeloma patients experience some sort of "first infusion" reaction, above and beyond the "normal" reaction one has to (other) new chemos. When switching treatments (which has happened more times than I can count now!), I read read read and consult 24/7 about the new medication, treatment details, possible consequences, etc., so I know what I am getting into. I may not fully understand all Darza's bio-chemistry, but at least I won't be surprised if I do have an initial infusion reaction. 

Am I scared? No. Am I nervous? No. Am I anxious? Yes... Anxious to just get this first infusion over and done with. Anxious to know if this treatment will lasso my escalating IgA and M Protein. Anxious to find out if I can be back on the winning side for change. Anxious to be ok for a little bit, if possible. Anxious for a bit of potential "normalcy" in my life, if Darza and I become friends

See Revlimid Dex was challenging regarding GI side effects, but totally worth it prior to SCT (2010), after SCT (2010-2012), then after coming out of remission (2013), until mid 2015. Then Kyprolis Dex gave me at least 9 months, from late 2015 to mid 2016. Then recently Dex, Pomalyst and Velcade, unfortunately barely made a dent. Then actually made a tiny dent, but my Dr and I decided to toss Pom and Velcade aside and go for the new big dog, Darzalex.

So hello to allll day, 8+ hour "slo-mo" infusions Tuesday Feb 28 and Wednesday March 1. The 8+ hour, all day, slow infusion rate is the norm, to help prevent side effects. And if there are side effects, the infusion is stopped, reaction-targeted meds administered, and hopefully, onward I can go. We'll see what happens!

And what are those intense, serious, potential first infusion side effects? 

DARZALEX® (daratumumab) Important Safety Information – Professional

WARNINGS AND PRECAUTIONS
Infusion Reactions - DARZALEX can cause severe infusion reactions. Approximately half of all patients experienced a reaction, most during the first infusion. Infusion reactions can also occur with subsequent infusions. Nearly all reactions occurred during infusion or within 4 hours of completing an infusion. Prior to the introduction of post-infusion medication in clinical trials, infusion reactions occurred up to 48 hours after infusion. Severe reactions have occurred, including bronchospasm, hypoxia, dyspnea, and hypertension. Signs and symptoms may include respiratory symptoms, such as cough, wheezing, larynx and throat tightness and irritation, laryngeal edema, pulmonary edema, nasal congestion, and allergic rhinitis. Less common symptoms were hypotension, headache, rash, urticaria, pruritus, nausea, vomiting, and chills.
Pre-medicate patients with antihistamines, antipyretics and corticosteroids. Frequently monitor patients during the entire infusion. Interrupt infusion for reactions of any severity and institute medical management as needed. Permanently discontinue therapy for life-threatening (Grade 4) reactions. For patients with Grade 1, 2, or 3 reactions, reduce the infusion rate when re-starting the infusion.
To reduce the risk of delayed infusion reactions, administer oral corticosteroids to all patients the first and second day after all infusions. Patients with a history of obstructive pulmonary disorders may require additional post-infusion medications to manage respiratory complications. Consider prescribing short- and long-acting bronchodilators and inhaled corticosteroids for patients with obstructive pulmonary disorders.

Interference with Serological Testing - Daratumumab binds to CD38 on red blood cells (RBCs) and results in a positive Indirect Antiglobulin Test (Coombs test). Daratumumab-mediated positive indirect antiglobulin test may persist for up to 6 months after the last daratumumab infusion. Daratumumab bound to RBCs masks detection of antibodies to minor antigens in the patient’s serum. The determination of a patient’s ABO and Rh blood type are not impacted. Notify blood transfusion centers of this interference with serological testing and inform blood banks that a patient has received DARZALEX. Type and screen patients prior to starting DARZALEX.

Interference with Determination of Complete Response - Daratumumab is a human IgG kappa monoclonal antibody that can be detected on both, the serum protein electrophoresis (SPE) and immunofixation (IFE) assays used for the clinical monitoring of endogenous M-protein. This interference can impact the determination of complete response and of disease progression in some patients with IgG kappa myeloma protein.

Adverse Reactions - The most frequently reported adverse reactions (incidence ≥20%) were: fatigue, nausea, back pain, pyrexia, cough, and upper respiratory tract infection.
Serious adverse reactions were reported in 51 (33%) of patients. The most frequent serious adverse reactions were pneumonia (6%), general physical health deterioration (3%), and pyrexia (3%).


MMRF: Darzalez

IMF: Darzalex

So wish me luck and I do hope for the best, with minimal infusion reactions. Me, being me, and proactive as I am, I plan to Dex up Monday, the day before, with 8mg steroids (2 pills). Then Dex up early Tuesday with 20mg (5 pills), before even arriving for the infusion. I may even take some Benadryl in advance too, maybe some Claritin too. YES, all of this PRE-APPROVED by my Dr and chemo lab Pharmacists! I inquired about this at my last appointment, when we agreed to switch from Pom, Velcade to Darzalex. I know I am a "non-conformist" and a bit "rogue", but not stupid :)) I only do what is medical protocol. I will post an update as soon as I feel ok, to let you know how I did. Thank you in advance for caring as you do, all these years!

 How many doggies do you see?
Count the noses :))


Yep!! 

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!  



Friday, February 17, 2017

Stop This, Start That, Moving On

Hello 2.17.17


Ok Pomalyst, you're history for now, as you're affecting my CBCs in a terrible way and you're not really pummeling myeloma anyway. So GoodBye Pom. I'm Neutropenic, as my immune system apparently can't handle your "power". Dr P thinks Pom at 4mg is just too much for my fragile system right now. But I do wonder, being on this triplet cocktail, is it only the Pom doing this? Is Velcade a culprit too? And Dex? Of course they all are! See, this is why I have always preferred singular agents with Dex, so we can see which chemo does what to me, independently and individually. With combo cocktails, who knows which is doing what, right? Myeloma buddies, how do you sort all this out?

My appointment was full of information and lots to talk about and decide.


While looking at my recent labs, surprisingly my IgA and M Protein ACTUALLY CAME DOWN A BIT! But Dr P believes they are still way too high to continue another month status quo with Pomalyst, Velcade and Dex. I agree. Let's slam those myeloma cells, get the numbers down (hopefully), then talk about the next chapter. Ugh, I just don't like medication changes, and always hope beyond hope that I can get longevity mileage out a treatment regimen before tossing it out. But as they say, numbers don't lie, right...

 I think this drop is meaningful

 M Protein down a bit too

Dr P wants to begin Darzalex in a week or so (Feb 28), and she also suggested adding Ninlaro to the mix, with of course Dex. Can you guess my perspective on this... Yep, I said... well No! I prefer to begin a new chemo singularly, as I mentioned above, as I like to know which medication is causing what. And I think it's important to know if each agent is working independently. No I am not a Dr or chemist or medical researcher, just one who knows my body, and I am a "less is more" person, as I have mentioned a zillion times before on this blog :))

I agreed to begin Darzalex with Dex, and hold off on a third med. Let's see how I do on Darza, and if it is the "new wonder drug" many have indicated it is. We'll find out if it indeed does "wonders" for me as it has for others. Then we can add back Velcade, or Pom or Rev or try Ninlaro. Choices, choices, choices. OyVey!

But then, after processing and mulling alllllll this over, I began to think: "if my current cocktail is now making a dent... why CHANGE??" Oh, that's right, my numbers are really high lol, and also one of those beasts is dragging my immune system back to SCT hospitalization status. Ok, Darza here we come Feb 28.


I also consulted with the chemo specialty pharmacists right after my appointment and let them know what's happening (they know me well) and I quickly asked a zillion questions about the scary first infusion. "Should I premed with my regular dose Dex before I come?" "Should I bring my own inhaler for asthmatic reactions?" "Should I premed with anything else?" Well, yes, yes and yes they replied and suggested yes, premed with Dex, premed a few days before with Claritin, Zertex, Allegra, Benadryl, etc. I thought these were awesome suggestions, based upon what I have read the first infusion challenges are! Drug up Julie!



cancer-treatment/chemotherapy/oncolink-rx/daratumumab-darzalex-r

https://www.darzalexhcp.com

https://www.darzalex.com/

But I still wonder... should I stay on the current cocktail I'm on?? It is slightly working. Ugh, I hate you myeloma! Leave me alone and stop consuming my entire being and life!
So that's the plan man, and I get 10 days off Pom and Vel to hopefully boost my system back up. I took 20mg Dex prior to my appointment, as I didn't know I wouldn't be getting my weekly Velcade shot. I took my remaining 20mg Dex today. Yiippee, Dex me up you crazy 40mgs, buzz me up for 48 hours! But the type, length and intensity of my looming crash and side efffects is always a nasty surprise. It's worth it, as I felt pretty good yesterday and today, so who knows. Felt good, that is, for being sooooooo immune compromised. Good enough to get out in this huge rainstorm So Cal is experiencing:

 I'm such a rebellious cancer patient-
Here I am immune compromised and Neutropenic, 
but you can't keep me away from 
Nature and all her beauty and beast!

 Normally, this area is dust bowl dry, 
but at it's peak, this must have been over 7' 
of raging river!

 Logs, telephone poles, coverts, lumber, mini boulders
all went sailing by, like they were feathers!

Beneath this raging water
is normally a 5'+ drop off! 
Then add 2'+ more of water
Very intense!

Those pictures may not look dramatic, but our normally drought dry creek bed was a roaring flash flood river today! WOW! We were all over the news too. I took a lot of pictures and videos, got quite wet and so did my phone, so I had some delay in downloading and retrieving pictures. I will add more tomorrow, so check back.

 Oh yes, the fierce winds remodeled our corral roof! 
More like a sunshade or rain slide now!

So much seems to always happen, when I think so little will LOL. Such is life, and I am so very grateful to have this life, myeloma drama and all, as long as I can breathe deeply this life of surprises, love, beauty, laughter, unexpected excitement and beautiful people and places surrounding me!

And this happened to poor Jim a few days ago!
He slipped and fell on our tile entrance
where I had a towel from all the rain.
And that was before this BIG GIANT of a storm!
He's much better now! 

 
And then the next day this happened!
Our son Scott planned a fun and fancy date for all of us!
See Myeloma, you can't stop me from
living life in the "small" way I do :))


Thank you everyone for checking in and caring about my life, status and story as you do!

Here's an interesting SCT article. I always wondered how they "cleaned" our stemmies prior to the stem cell transplant! clinical-trial-cleaning-up-stem-cells-before-they-are-given-back-during-stem-cell-transplant/ 


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!  


My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.