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Thursday, April 30, 2020

Myeloma is Too Smart and Currently Winning :((


Hello Everyone-

Hoping all is good with all of you during this new new new normal we are all experiencing. The spectrum of affect is so different for everyone, depending where you live, what your living circumstances are, what your work, home and family and life is, what your medical situation is, etc. As I have written before, not a whole lot has changed for me, as I've lived quite the isolated immune compromised life for more years than most people could tolerate. Main change for me, is lack of availability of common household products I used to order easily online, and of course the worry of coming in contact of that sneaky stealth coronavirus.

I have a phone consult with my Dr today, and suspect she will again want to discuss changing up my chemos, as Myeloma is again outsmarting our triplet concoction of Dex steroids, Velcade and Cyclophosphamide. As I have mentioned a zillion times, my main concern with changing treatments is my fear of new side effects. I'm just so tired of 10+ years of not feeling well. Just so exhausted from weekly medication crashes. Just so beat up from being sick for so long. Yes, just sick of being sick. I feel so beat up right now, as I've been doing too much around around my house and yard with Jim's situation, and I had a terrible GI crash late Tues, early Wed from Monday's treatment. Was on the pottie til about 2am, finally showered around 2:30am. When Jim's caregiver Chris came in the morning, I went back to bed until around 3pm Wed. Still feel so wiped out (no pun intended lol)

I'll post screenshots of my labs after our phone appointment, but I did see my IGA and Beta2 Microglobulin the other day, and both are way above normal. IGA is over 1740, and Beta2 over 2. Normal for IGA is 70-400, so that puts me at over 4x the high end of normal... been there before, so I'm not in a panic about it, just sad this treatment is now becoming ineffective, but to be expected by now. I'm still very appreciative that it lasted as long as it has, since Sept 2018!

5.1.20 UPDATE

Ok, here are my most recent Lab results:
Up up and away...

M Protein up up up

Beta2 Microglobulin
Up up up

Sooooooooooo.... after seeing these results...
You can imagine how the conversation with my Dr went with my increasing lab stats. She is very vigilant, and not wanting to let my levels escalate any further...  Me, I would wait to see if they would magically come down next cycle, or wait until my IGA is over 2000. Stupid, yes. Scared, yes. Not wanting this news, yes. We discussed the reality of my situation with the myeloma increasing, the length of time I have had myeloma, the amount and types of chemo and immunotherapy treatments I have already been through for over 10+ years, and what remaining treatment options are available to me. Yes, I must move forward and accept that my current triplet treatment is no long effective.

I'm still processing everything, but my situation really hit me yesterday, and I had a mini meltdown but eventually pulled myself together as I always do. I'm still very sad today. Guess I still live in a hopeful, too optimistic, dream world, that my Myeloma will magically be in control, and I can go forward with my life, and pretend I am ok. I still hope each morning I will wake up, and Jim will be his ol self again, and I will be ok, and we can can back to our pre-illness life. I really don't want much, I just want to feel good and have functionality. Yes in the BIG PICTURE OF THE WORLD RIGHT NOW, I am very very fortunate, and I know it. I just miss my old life, and I miss all the potential things I had planned on doing in this chapter of my life, had I been well, had we both been well... oh well... forward march Julie...

I accepted my fate reluctantly, while pleading and negotiating no drastic medication changes. Ha Ha! I never want to NOT be on myeloma pummeling meds, no matter what. I know my Myeloma, and know how aggressive it is, and know that left UNtreated.... it escalates FAST! Even in the end... I will do Dex steroids to feel ok. So my Dr recommended we stop my current triplet of Dex steroids, Velcade and Cytoxan and MOVE TO Elotuzumab Empliciti with Pomalyst  and Dex.

She told me a "transition period" is needed to clear the current meds out of my system, which makes sense, and to just take the Dex steroids for the next 2 weeks. But that scares me. Just Dex... there you go myeloma. Free ride to take over... We would then have an in-person appointment, second week of May. I again mentioned how my numbers have rollercoasted over the last 10 years and I wasn't too too worried about the levels now, and could we just go another month, and see what happens, blah blah, me thinking one month will do something magical, blah blah, ha ha...  Nope, she's worried about the upward trend, and doesn't want to wait to see what might happen, and actually, no point in waiting, the trend speaks for itself... Ah, yes... my numbers speak for themselves... Ok, ok, here we go... cccchhhhange...

So we will drop the Velcade starting now. My last dose was this past Monday, and I'm pretty proud I tolerated it to shot #80! Yes, 80 shots of Velcade. 80 weeks of Velcade! Go me. I have had a bit more Neuropathy in my feet lately, so perhaps this is the best decision.

The New Plan:
I will do Dex and Cytoxan (Cyclophosphamide) on Monday May 4th, without the Velcade. This will be my last dose of the 400mg Cytoxan pills. Then the following Monday, May 11th, I will just do the 40mg Dex steroids. Then Tues May 12th, I will meet with my Dr to discuss the new plan of Elotuzumab and Pomalyst, to begin on Monday May 18th.

Not happy myeloma is once again winning, but grateful I have options.
Scared of new side effects, but sadly used to it.
Tired of the whole thing, yes, but I won't give up yet!
Beautiful sunset view from my backyard the other day :))
Yes, I am still very very fortunate...

Jim's roses are so beautiful this year!

Thank you for reading and caring about my crazy myeloma story. Stay well, stay away from all the cooties and I hope your life is less complex than mine!


  1. Greetings Julie from Adelaide in Sth Australia.
    80 cycles of Velcade is amazing, you must be tough. I am on my 6th cycle and don't like it, but my paraprotein ( which I think you call M protein) is down to one, which I think is also a different " measurement " from in the US so not sure of the equivalent?. So it's working, - I am hoping for zero but do have mild neuropathy in the soles of the feet , but all the other blood parameters are normal- 10 years since 2 stem cell transplants.
    All my treatment is now at home, but I go to see the doctor after 5 weeks, she prefers that. The home nurses are excellent and glad to have a job as the private hospitals are quiet.
    We are still in lockdown for Corona but our state has had no new cases in 10 days so next week Mr Morrison ( Prime Minister0 says we will be through to the other side we hope and can free up a bit.
    Good to hear you are surviving so keep battling. Myeloma is better than melanoma. Doug Allen

    1. Hi Doug! So fun to hear from you from across the globe! Always such a great reminder "how small (and similar) the world is" during crazy times like this, right :)) And also with a diagnosis like we have.

      Thank you for sharing your treatment status with me. I love to hear from my fellow myeloma warriors! And did I read correctly that you're a 10 year survivor too, but with 2 SCTs? Wow, go you Doug!
      I would love to hear your full story, and all your meds over the years if you'd like to share here, or to my email:

      So glad your M Protein is coming down too. I would imagine the AU scale is similar to USA. What "type" of MM are you? I'm IGA Lambda. And also tell me the treatment you are now on from home. Pill form of Velcade as Ninlaro? and anything else?

      I'll be updating my blog on May 10 with the new treatment my Dr is planning, but I also have an appt on May 12, so things may change.

      Thank you again for reading and commenting Doug. And please be well, and keep on dominating Myeloma!! :))

    2. Hi Julie, thank you for your reply and thoughts about our mutual condition. Medicine and myeloma is world wide now and I will be interested to hear how you fare with Elotuzumab and Pomalyst. What names they have , but I am doing well on Velcade now.
      I have velcade
      S/C weekly with 50 mg of cyclo and 20 mg of dex 2 days per week, as well as the daily antiviral ( famvir) . Antifungal ( posaconazole) anti reflux and antibacterial (sulpha/trimethoprim) Monday and Thursday as well as 3 monthly IV pamidronate. I suppose it's worth it and it keeps me alive.
      10 Years ago I thought I had a broken rib and had a blood test which showed raised protein, M protein 37 grams/ litre or 3.7 grams per decilitre. My bones were full of it on the scans and after induction treatment on CID - cyclo, idarubicin,dexamethazone I had the terrible melphlan and SCT.
      The M protein came down to 1.2 g/dl and then after another SCT 3 months later down to 0.3. Thalidomide caused a rash and I went on Revlimid and did well and went back to work and travelled the world.
      Unfortunately I developed a rare complication to revlimid- interstitial pneumonitis, which has affected my lungs and breathing a bit. My oldr brother , a pathologist who worked at the AFIP in Washington years ago found the condition in his programme so I am half way through my 11 month course of velcade- I am not sure why 11 months is the course but maybe that's all that is funded.
      All myelomas seem to be different but mone is slow and Dr. Horvath has not designated it exactly to me.
      I have had infections ( CMV cytomegalovirus) RSV Respiratory syncytial virus, and an unusual foot infection caused by a germ called rothea Mucilaginosa.
      It's a long hard road isn't it, but if you can survive the side effects and keep your spirits up you will be ok. I have a supportive wife who keeps an eagle eye on me and now we are coming out of lockdown we be able to have a family gathering tomorrow for Mother's Day.
      All the best, Doug
      ps I am the typist and Doug's writing is very hard to read at times so please excuse the errors, mainly in drug names as he's not here to check! I have been very sorry to hear of your husband's condition and I just don't know how you deal with that as well. Chris

    3. Hi Chris and Doug, WOW, thank you for sharing your story and details! Go us for surviving 10 years! So glad to know someone else with a decade of longevity. Very remarkable I think! And WOW, Doug, what you've been thru. I whine and complain, but I haven't been thru half what you have. Did I read correctly that you've endured 2 SCTs, and wow, all those infections too. I've had "normal" awful colds, flues etc, but nothing like you mention. Isn't it amazing what we can all handle! And then there are those that get off lighter than us, and those that have a worse time than us, and pass away sooner.
      I will have read up on all the weird infections you've had. So sorry. But you must be one Man of Steel to survive all you have! I did wind up with a weird finger infection from a claw scratch from holding one of my chickens. But antibiotics fixed that up, after I stubbornly accepted it wasn't going to disappear on it's own LOL. I'm sure I have post about it in 2016 or 2017.

      How handy you have a Pathologist bother to consult about all this craziness too! And you mention you traveled the world. How brave of you! My immune system is always so trashed, I just avoid so much, as I hate being sick.

      Glad you are on a lower dose than I was with the Cytoxan, and Dex, with the Velcade. I was doing 400mg Cytoxan/Cyclophosphamide every week, with the Velcade and 40mg weekly of Dex. Amazing what our bodies can handle, right.

      Thank you so much for your reply Doug and Chris, and I am so happy to have met you, and hear your amazing story of survival! Stay well, strong, away from all the cooties, and let's hope for more decades, pummeling myeloma, right! Thank you so much for your replies, and sharing your myeloma journey details :)) Julie


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, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.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?”)


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.