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Saturday, November 26, 2016

And the Pomalyst Drama has Begun...Hello Crazy Side Effects!

Hello 11/26/16

Each time I finish a blog post, I surprise myself how it winds up so much longer and detailed than I had ever intended or anticipated! As I click "Post", I'm sure I won't "need" to write another update on the next "6's", as I've told all there is to tell, shared all my relevant details, and certainly not much more can happen worth posting about in 10 days! Well Hello Myeloma, You Never Stop Surprising me, Challenging me, and darn it, there's Never a dull moment between posts! OMG what a ride it's been this week.

So I left off on my last post, updating you that I would be ending my Kyprolis journey and beginning a new journey with Pomalyst. What a difference 10 days makes! So much has happened between 11/16 and 11/26. Ready to hear about my crazy ride?! Here goes:


Monday November 14, I went to my "regular" Kyprolis infusion. Took my 20mg Dex roids prior to infusion as always. As you saw from my last post, my November myeloma stats were released online for me in advance, so I pretty much knew that Kyprolis had become Refractory for me, my numbers were really escalating, and no doubt Kyprolis would be getting the boot. As I mentioned in my last post, I began to feel really sentimental in the chemo lab, fully realizing how my treatment life would be dramatically changing. That place had become my "other home", my "other office", and the staff and patients- friends and comrades. There's just such a "deep connection" between all of us in the chemo lab. Suddenly, I began to wish I still had the infusion option. It also hit me that I wouldn't be as monitored on the pill form chemo, as I am on the IV type. Yet on the other hand, I began to get a bit excited thinking about the "new freedom" I would gain, not having the trek to the chemo lab 2x per week, 3 weeks per month.

Tuesday November 15, I had my monthly update appointment with my local oncologist Dr P, prior to what would normally be my 2nd (per week) Kyprolis infusion. Well... when she brought up all my stats, we both quickly acknowledged it was time for a chemo change. So it officially became official that Kyprolis is definitely not working any more, and we immediately discussed Pomalyst as my next treatment option. (Actually I think I told all this on my previous post, lol). So long story short, my Dr cancelled my Kyprolis infusions, and recommended beginning full dose of 4mg Pom. I of course, wanted to start slow and mild with 2mg Pom. Dr P was concerned this was half dose, and too low considering my high numbers, so we met in the middle at 3mg Pom, and my nurse got the ordering process going for me. Been there done that, just like Revlimid. Hello Celgene REMS program again. I left the appointment feeling sad, yet free, scared, yet curious how this new treatment would be. So many questions, so much to wonder about, so much I am not in control of. But what we do know, myeloma is currently winning...

Just look at those crazy escalating IgA numbers

And that M Protein! What the heck myeloma! 

I saw several familiar chemo comrades in the lab as I said goodbye to everyone, and more in the waiting room... we discussed our respective statuses, and said we hope to see each other soon. I was sure I would be seeing one patient in particular again, as his treatment cycle was nearing an end date, and he was due for a status scan. He was feeling great, and happy to get on with life... but I learned otherwise, just the other day.. heartbreaking story below.. Yes, expect the unexpected always, and never doubt the power of our bodies to sabotage us...

Thursday November 18 was my every 3 month appointment with Dr S, my Stem Cell Transplant oncologist. Pretty much the same conversation as with Dr P: Yep, Kyprolis is Refractory, Pomalyst is the next great choice. We'll see how my numbers go... maybe consider a "triplet" treatment if need be. Pom + ? + Dex. I haven't had to do that yet, as I have been very fortunate to respond to one chemo paired with Dex, at a time. He also mentioned all the "new" meds and options we all read about, and also potential clinical trials when the time comes. Eeekk... that's kinda scary to me... the idea that I will eventually run thru all the current meds, run out of options and have to participate in a trial to keep me alive... ssscccccaaaarrrryyyy.....

Just trying to be funny and stay positive always

On the way home from this appointment, we picked up my Pomalyst Rx at the local Fed Ex office. Deja vu Revlimid to Pomalyst. All this is just so surreal! This was Friday Nov 18, and I drove home feeling free, yet a bit anxious... wondering how me and Pom would get along. Then it hit me... OMG my birthday is Tues Nov 22, Thanksgiving is Thurs Nov 24. In between that time, we have a chance to meet up with some family friends we hadn't seen for over 20+ years! Yikes, how am I going to begin this new Pom regimen, figure out when to take my Dex, knowing, anticipating the awful debilitating crash, and wondering what new side effects may or may not hit me during all these upcoming social events. Dang you myeloma, you have totally interrupted and derailed my life! Almost 7 years into this, I still cannot fully compute all this. I still fight how myeloma has completely changed my life as I knew it, and I still dream of  "normalcy" from my body lol.

I am so very very fortunate to have the amazing insurance I do! 

Yes, one of my greatest challenges is coordinating my REAL LIFE with my treatment life. Cancer, treatments and side effects just get in the way of everything, and makes it so ridiculous to try to live life. I read so many other blogs and marvel at how much my fellow cancer patients still accomplish, and are able to get out and do. I don't consider myself a lazy lump at all, but the low blood levels fatigue is just so disabling. Relatively speaking, my life is active for a cancer patient, yet I am so very frustrated how myeloma stole my previous "normal" life from me. I am just a dysfunctional fraction of who I used to be. I marvel at the stories I read of other patients, traveling, working, meeting up with friends, family, grandkids, going on world adventures, travel adventures, sports and physical challenge events, etc. Me, I really can't even live life spontaneously any more, as I just don't know what side effect is going to hit me when or where, not to mention the extreme fatigue I experience on all non-steroid days. I just hate being out of control of my own body and hate being controlled by all these waste of time symptoms and side effects. But I push forward, and embrace the "good days" whenever I get one.

Happy beautiful birthday day to me!

So I decided to put off taking Pomalyst immediately, as we had planned a little day trip for my Bday on Saturday 11/19, then meeting up with our out of town friends on Sunday 11/20, then going out to dinner on Tues 11/22 for my actual Bday and then lastly, celebrating Thanksgiving on 11/24. Seems silly to think one event per day, every other day, is a big deal, but it really is for me. Generally I can't even handle one event per day anymore, as the fatigue is so disabling, or the surprise side effects keep me home bound. But there were just so many fun events all at once, I wasn't going to let myeloma and treatments control me. As I write this, I shake my head at how absurd all this sounds, but it truly is a real problem for me. How to coordinate when to take meds, with anticipating reactions, side effects, the awful crash, and still be able to have some semblance of life. Well I opted to put off starting the new treatment for a day or so. I have to live my life!

Happy Bday to me. I made another one!

 But this was before Pom and Dex!

Lucky me! 

Yummy! 

Perfect day! 

Lucky Lucky me! Love them!

And so... long story short, I took my first Pom pill on Saturday night, Nov 19, without Dex, as I needed to hold off on the Dex to get me past Thanksgiving, Nov 24. (Isn't this advance planning ridiculous, but I have to, as the crash is so debilitating!) I took the Pom with an aspirin and Benadryl, just like I did with the Revlimid. I woke up in the morning feeling ok, but noticed my scalp was a bit hot and itchy, but I didn't really pay that much attention to it, except when I caught myself inadvertently scratching. I noticed, but I tried not to focus on the itchiness. I remembered my intense initial treatment Revlimid rash reaction, but I dismissed any similarities.

Sunday November 20 we went downtown to meet up with our out of town friends, and that was really fun. We met in Hawaii over 20+ years ago, and have stayed in touch ever since! I almost felt "normal", thinking, wow, look how much I am doing at a time, and I'm feeling ok after one Pom dose lol. That night I took my 2nd Pom pill with aspirin and Benadryl. I remember suddenly in the middle of the night being aware how itchy my scalp felt, but I dismissed it and tried to sleep.


But... when I woke up Monday morning... OMG, there IT was... my forehead was all red, spotty, blotchy, mottled, and itching so intense on my scalp, I couldn't believe it. My head felt on fire, like an intense sunburn. I started eating Benadryl like candy, taking Claritin, and whatever Antihistamine I had. I use the Jr "melt away" version, as I get so tired swallowing pills all the time, and I learned from a Dr, that the fast dissolve type gets into your system quickest, for a more immediate affect. Towards the evening, the rash and intense itching had calmed down a bit, but I couldn't even tell you how much allergy meds I took! I decided NOT to take Pom pill #3 Sunday night.
Monday November 21, I contacted my oncologist and told her of my circumstances, and she recommended not taking the Pom for a day or two and to take the Dex asap. Well... here we go again, with the issue of trying to space out the Dex for my social events, verses taking it immediately for treatment purposes. Ugh, stupid myeloma and side effects, you just won't let me live my life. How do other patients work all this out! How do others go about "normal life", with the ups and downs of treatment side effects?!

So Tuesday November 22, my Bday, I took a 1/3 of my weekly Dex dose, knowing I needed to space it out for 3 days, to get through Thanksgiving. I was also curious if spacing out the Dex would impact the rash issue. As I've mentioned before, back for initial treatments in 2010, I took Revlimid with 40mg Dex, 4 days on, 4 days off! That's 160mg of Dex per week! Whew! Crazy, but it sure worked! Revlimid rash controlled and myeloma numbers plummeted! I do think spacing out Dex for several days works better for me, rather than slamming it down in one day. I wonder what the research is on this, or if there is research on this, and why the Rx protocol suggests the large one dose of Dex vs separating it out with treatments. Have to see what I can find online about that. But I have to make it through Tuesday, Wednesday and into Thanksgiving Thursday, so cheers to 3 days of Dex, 1/3 of 40mg, each day.


So this brings me to now, Friday 11/25 and Sat 11/26, trying to find the helium to finish this post. I am definitely crashing from the 3 day Dex blitz, all the Benadryl and probably the new and additional fatigue from the Pom. I'm dizzy, have blurry vision, swollen, exhausted, fatigued, zero energy, headachy, feel a bit of neuropathy tingling and numbness, etc, but I am HAPPY TO REPORT that I haven't had the INTENSE on fire RASH REACTION, that I did with my 2nd Pom pill. I'm still itchy, but nothing compared to what happened with Pom pill #2! We'll see what happens in the next few days, without Dex, as I wait to figure out when to Dex up again... as yes,... so many social plans upcoming, and it's not easy coordinating all of this.

Please if you are a myeloma patient on Dex and other MM meds, please tell me how you space everything out, to make it work for you medically and socially!! I'm taking taking the Pom pill at night, and even though all the Benadryl is drying me out and giving me other side effects, I think it's best to continue it, when I'm not on Dex. Fatigue city here... hope I haven't bored you with all my ranting details.

Lastly, as I mentioned above, I have a really sad story. One of my chemo lab comrades lost his battle just days after I saw him last week. So shocking and devastating to find out. We all "chance" upon each other in the waiting room and chemo lab, chit chat about our current treatments, side effects, progress and status, and share family and personal stories. We impact each other's lives in a deep, quiet way. It's an "unwanted club" we belong to, that bonds us together in a way "normal" relationships cannot. We comment on how so many of us look quite good for cancer patients in treatment. We comment that we can't ever give up. We must be strong and push forward always. We comment that we can't let cancer win. Dave was positive, optimistic, and seemed to feel quite well. I met Dave in the treatment room with his wife Jenny and sister Janet. Such a warm, sincere, delightful, loving family. Just early last week, Dave was looking forward to his status scan, to see how well his treatment was going. I was so happy that Dave seemed to be doing well, feeling ok, and was just about done with his current treatment protocol. He seemed to take everything in stride. Then, just days later, I find out his body sabotaged him. I'm shocked beyond words... I don't understand this life. My heart aches for his beautiful family that he was stolen from way too soon. Life is so unfair, and I just don't understand "why bad things happen to good people". We are friends forever Dave, Jenny and Janet. You will be forever my heart.

Dave and his sweet, funny sister Janet 

Dave and his beautiful family

************

Ok, my head hurts, I am so exhausted and fatigued, and I also feel that all too familiar itchy tingling sensation on my scalp, that I am trying hard to ignore. Cross your fingers I can tolerate Pomalyst, and I'm not too allergic to it. Why, life, why?
Thank you for reading and caring about my story!




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


4 comments:

  1. I am so happy you continue to post. I check in to see if you've written anything new about once a week. You're quite prolific, funny and inspiring. My husband Curt is now on Pomalyst, Dex and ACY, a clinical trial. We shall see how the numbers play out. He is well, tolerating all. Feel good!

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  2. Aww, thank you so much Wendy for continuing to follow my story and letting me know you do! When I write, I truly have no idea who reads my posts, but I know I love following other people's stories, so I write to share my experiences, hoping I continue to touch lives. Thank you for letting me know you appreciate my wacky style :)) And thank you for sharing about Curt too. Is he on the "triplet" trial by choice, or did he run thru most of the MM meds? Do you know what the ACY is? I'm a little afraid of trials, due to the unknown, but know that one day, I too will be doing that to continue treatments. What level Dex and Pom is he on? Again, thank you so much Wendy for checking in. Means a lot to me :)) xoxo

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  3. First, Happy Birthday Julie! Second, you are an AMAZING woman, inspiring to so many! I admire your strength and sense of humor, as I know this is what keeps you moving forward to fight the good fight. You are in my heart and prayers always. Love you, Leslie C.

    ReplyDelete
  4. You can read about ACY here: http://www.acetylon.com/acy-241_in_multiple_myeloma.ph If that URL doesn't compute, just look up ACY and mutliple myeloma and it will come up. There are only 6 people in this trial at Dana Farber in Boston. His Dr, Paul Richardson, is one of the people running the trial. So far, we've been very happy with Dr Richardson's suggestions. You do have to be a little cautious, because people are needed for these trials, but hey he took the Hippocratic Oath, right? Curt did find out today that his numbers have improved. We were given other choices as to what drugs to take and this "triplet" (I like that) seemed best. Curt lives a pretty normal life and I think his attitude has a lot to do with it.
    Trying to remember where you live. Is it California? We're in Maine and are going to Palm Springs for a bit in late January through early February. Gotta get out of this cold!
    Hope you're feeling well.
    Wendy

    ReplyDelete

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.