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Monday, October 8, 2018

Chemo in the Belly! Hello Vintage Velcade

10.8.18
Hello October!


I'm headed to the Chemo Lab soon for my 3rd Velcade shot. So far, so good THIS TIME! Some Neuropathy, but nothing crazy like the "Frankenstein affect" I had from Melphalan back in July 2010, as prep for my Stem Cell Transplant.
https://juliesmyelomamoments.blogspot.com/2010/09/
https://juliesmyelomamoments.blogspot.com/2010/10/ 

My first Velcade shot this time around, I had a little swelling and redness at the injection site, the 2nd shot, the same. This is NOTHING at all like my brief experience back in February, March 2017 when paired with Darzalex! So far Velcade is my friend, as I am not experiencing outrageous side effects. And if you've followed my blog for a while, or know me personally, you know my philosophy of "Less is More"... as yes, I asked my Dr to start me off LOW dose this time, and build from there if necessary. See, my system is just so stikin sensitive to everything, then it adjusts, and shabam! Me and chemicals do fine :))

Back in 2017, we had originally tried the Darzalex, Velcade, Dex triplet combo, but then I wound up with CRAZY, on fire skin and nerve pain. It was like having a skin fever, without the actual fever, and cats scratching my skin and nerves 24 7. Was just awful. Whether it was the first several Darza infusions, or the Velcade itself, or the combo of the 2 fighting each other, I don't know, but I DITCHED that FAST as it was so painful and so intense. Here's what happened back then! https://juliesmyelomamoments.blogspot.com/2017/03/ . That's when we switched to Pomalyst, and the rest is history from March 2017 to September 2018. I'm proud that my body was strong enough to utilize the powers of Darza and Pom for so long, but this seems to be my trend of doing ok for a year plus, before becoming Refractory to each treatment cocktail.

Gotta go.....
TO BE CONTINUED.... :))

 I'll post my current Labs when I return, and update you about my crazy BONE PAIN situation, and upcoming Radiation appointment... 

Yep, I have officially joined the 
"Blue Placard Club"
Pain is No Joke!




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4 comments:

  1. KarenOctober 11, 2018

    Hi Julie . It's Karen from NY.. thinking of you..hope velcade and radiation helps.. my husband started darzalex and 25 of Revlimid. He just had his first week off. its very difficult.. as you certainly know. ...My daughter is doing the MMRF run in NYC next weekend.. she'll be running for you and all the others... raising money for more research.. please continue to stay strong and always remember how much your blogs have continued to help others. In my prayers
    Karen

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    Replies
    1. JulieOctober 16, 2018

      Hi Karen, thanks so much for checking in and updating me :)) Ugh, 25mg Rev has got to be tough! I never got beyond 15mg and Rev always caused me awful lower GI drama! I have some funny almost didn't make it to the pottie posts about all that. Hoping your hubby does ok on Darza! I did great from March 2017 to end of Sept 2018. What are his side effects? As I think back, they changed over time, and were less severe as the months passed.
      Thank you so much Karen for letting me know my posts make a difference out there in Myelomaville :))
      And let me know your daughter's name or team, and I am happy to donate!
      Thank you again for your friendship and support Karen! xoxo

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    2. KarenOctober 17, 2018

      Oh Julie that is so sweet..very nice of you .we're truly grateful for the newly approved treatments and research. Allison O'Brien Silva.is my marathon running daughter participating in the race. my other daughter Lauren and myself will be there to cheer her on..one of our doctors at Mt Sinai will be honored at the NYC race.. Jimmy is doing ok.with the darazel ..gotta check my spelling.. first three infusions were in the hospital..very scary. .. staff took it very seriously..he finally made it to every other week. the Dex and Rev causes problems.. agitation.. not sleeping..GI issues..we really don't do anything..have not seen grandchildren. Occasionally Jimmy will go to a matinee movie with our neighbor.He just saw the Neil Armstrong movie and loved it..usually not crowded..as you know life revolves around treatments..blood work.. especially the ever popular White Blood cell count..and side effects. But we continue to be thankful for what we have.. and remember you're always in our prayers..

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    3. JulieOctober 19, 2018

      Hi Karen, I found Allison on the MMRF 5k run. Wow! Go her, top fundraiser :)) So awesome she is doing this for her Dad!
      So sorry for all Jimmy's side effects with Darza Rev Dex. I had a minor reax the first infusion, they stopped it, gave me more Benadryl, waited for about 40min then continued on. I lasted from March 2017 to end of Sept 2018 on Darza Pom Dex. It was quite tolerable for me, but I'm a rare one that doesn't mind the super high of Dex, and then the crash. It's yucky, but after almost 9 years, I've learned how to deal with it and expect it. This triplet really "corked" me up, but I'll take that over the "volcanic" lower GI from Revlimid :))
      Glad Jimmy gets out and about periodically, it gives us a sense of normalcy for sure. And yes, our immune systems are so compromised, the "well" person just doesn't get it :((
      Enjoy the 5k tomorrow, and I'll be cheering you all on in spirit xoxo

      Delete

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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
B-12
.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.