Myeloma, Party Of Two: Little Traumas
A long time ago, we knew that we wanted my husband, Daniel, to be treated at a major cancer research hospital for his multiple myeloma. We felt strongly enough about this that we sold our house, packed up our things, and relocated to Houston, Texas so that we could be close to such a center.
If we’ve ever needed a reason to believe that we made a good choice, learning that Daniel’s myeloma was much more difficult to treat than we expected answered that question for us. We would need imaginative solutions if his treatment was going to be successful.
As you may recall from my last column, Daniel’s cytogenetic testing indicated that he was supposed to be “average risk,” but his myeloma was not responding in the way “average risk” myeloma should. Daniel did not achieve any lasting remission after four cycles of induction therapy with Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone (Decadron). Then, his myeloma relapsed after receiving a combined salvage chemotherapy and stem cell mobilization regimen that included cyclophosphamide (Cytoxan), bortezomib (Velcade), doxorubicin (Adriamycin), and dexamethasone (CBAD).
Given that his myeloma progressed during these treatments, there was a good chance that we would not get the results we needed from the standard melphalan-only stem cell transplant. Based upon his disease progression with KRD and CBAD, we needed an outside-the-box approach.
The treatment plan? Daniel was enrolled in a clinical trial that uses a four-drug combination of Farydak (panobinostat), gemcitabine (Gemzar), busulfan, and melphalan instead of the the single-drug, high-dose melphalan that normally is administered at the start of the autologous stem cell transplant process. In the protocol for this particular trial, all participants would receive the same four-drug regimen.
We were told that the regimen being tested in the trial was tough. Two patients had died of sepsis thus far. However, we were assured that Daniel did not have the same comorbidities that they had.
Daniel entered the hospital on Monday, October 1st, and he was given the four-drug combination regimen over the course of a week. He was transplanted with his own stem cells on October 10th.
Honestly, Daniel has endured suffering that I never thought I’d see in another person. His upper and lower gastrointestinal issues have been of “biblical” proportions. He had chemotherapy burns that made his skin a crimson red and hot to the touch, like a sunburn, in various places from his head down to the toes and in the most uncomfortable places in between. He developed a red, irritating rash called folliculitis over most of his body as well.
He suffered from a severe case of mucositis, a condition in which sores and blisters coat the throat, mouth, and tongue, making it very painful, if not impossible, to swallow. The mucositis was so bad at one point that Daniel coughed up part of his esophageal lining because his throat and esophagus were so damaged from the intensive chemotherapy.
Even after the mucositis had cleared up, he lost his taste for most food. He had a muted ability to taste sweet things, but that wasn’t always to his advantage either, since many sweet tastes made him nauseated, as did many smells.
Over the past six weeks, Daniel has lost 46 pounds. He is able to drink meal replacement shakes, and he has just started being able to eat some raw foods and salad. He still can’t tolerate meat or cooked foods, which taste acrid to his palate. We joke with each other that I’d be a lot better off if I just ate what he ate, so we could both be getting skinny!
At the time of this column, we are back at home and on Day +33. Last week his myeloma labs were run for the first time since his stem cell transplant. We were holding our breath for a complete remission. We didn’t get it. We didn’t get a partial remission either. Thus far, Daniel’s serum protein electrophoresis shows a slight decrease in his M-spike from 2.2 g/dL (22 g/l), which is what it was before his stem cell transplant, to 2.0 g/dL. They call this “stable disease,” his specialist said, but the name felt like a consolation term that you use with patients instead of calling it a “failed response.”
I am still trying to wrap my head around what this means. How could induction therapy, a combined chemotherapy-mobilization regimen, and a stem cell transplant that included “everything but the kitchen sink” not work on his myeloma, which is supposed to be average risk with t(11:14) markers? I was shell-shocked. When we got the news, everything stopped for me.
I have read there may be chromosomal markers that myeloma researchers haven’t identified yet. I wonder if Dan has some unresearched, resistant strain of this cancer? I also thought about a clinical trial he was in several years ago for smoldering myeloma patients. It was a Phase 2 study of a peptide vaccine called PVX-410. After being on that drug, his myeloma largely did not grow for a year. Is it possible that something in that vaccine is now making his myeloma resistant to these therapies?
Of course, the impact of the four-drug regimen Daniel received in October is still ongoing, Daniel’s stem cell transplant doctor told us. It is possible that Daniel's M-spike will continue to decline over the next several months. However, his doctors aren’t waiting to see what that looks like.
We see Daniel’s myeloma specialist on December 5th. We will partner with Daniel’s stem cell transplant specialist and his myeloma team to plan his maintenance treatment. We were told that Daniel’s maintenance will likely contain several myeloma drugs, not just one, since he has yet to reach a sustained remission.
I wonder which medications they will recommend for maintenance, since Revlimid, the only known drug to show any positive impact on his myeloma so far, gave him blood clots. Once his myeloma begins to rise again, I am skeptical of what another stem cell transplant could do for him after he did not achieve a response from the first one, especially given the multiple drugs it involved. I wonder if we have burned through enough lines of therapy already to qualify for a CAR T-cell drug trial.
When I look back over this journey that we began this spring, it has been a long road. I’ve seen Daniel pass out twice where medical staff rushed in with emergency response carts like a scene from a medical drama on TV. We’ve rushed him to the emergency room with blood clots, kidney stones, and high fevers. He’s been hospitalized at least six times since March, and we’ve sat in a treatment room and looked for the silver lining in more bad news than I can count. How many times can you bear witness to the earth shattering and not be changed? How odd to experience these little traumas, and then just walk out of that treatment room and carry on as though it’s an entirely average day!
When I look back over this year, I will try to not remember all the little traumas. I will remember the carrying on. And I hope to remember that we found a way to get Daniel into remission.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 and active (symptomatic) multiple myeloma in 2018. You can view a list of Tabitha's previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I'm so sorry to hear about Daniel's struggles Tabitha. This damned disease is so hard to predict and so different for everyone. Luckily there are many treatments available and we can hope, with you, that Daniel's team finds the magic combination that gives him the response we all hope for. Stay strong.
My husband was diagnosed with multiple myeloma in 2009. We opted for an aggressive treatment and 2 stem cell transplants. Within months my husband was in remission. He had 4 years of maintenance and two years off when he relapsed. We are praying for remission once again. He is not there yet. I can relate with your hope and marvel with you at the strength of our loved ones. Thank you for sharing the details of your journey and my prayers will include you both.
Tabitha,
When I start feeling sorry for myself with side effects from drugs and wimpy responses to them too, I’m going to say a prayer for Daniel and you. What a struggle you’ve had and continue to have. As a 4;14 crossover I should be having more trouble. Instead I’m reacting somewhat like a “normal” myeloma patient. Just the opposite of Daniel. I guess there’s a lot still unknown about risks in this hated disease.
Keep your courage up, my friend. You’re not alone.
Julia
I can't imagine all your husband and you have been through. I'm exhausted just hearing your story. Your strength is amazing! I'm baffled at the poor response to therapy this far. There is so much to consider in this process, and I can tell you've been doing your research. He is lucky to have you as his advocate. Thank you for sharing your journey with us. We are all pulling for you and your husband.
Thanks for sharing your journey and exemplifying great endurance.
Continued prayers for you both.
Thank you for sharing your journey, Tabitha. You are often in my thoughts. Continued prayers for you and Daniel!
Dear Tabitha, how brave of you to write this moving piece about your plight. I am so, so sorry for you both. This is such a despicable disease and so unpredictable. I hope for some better days ahead for you both and I send all my love.
Daniel has been through so much with this treatment. You, too, as caregiver watching and going through it as well. His must be a very resistant myeloma. I hope that his M-protein starts to go down, which is possible even in the months to come. You've shared a very difficult part of your life but we, as myeloma patients, have learned something from this sharing, so thank you, and may there be better news soon.
Oh, dear Tabitha, my heart and my eyes cry for the pain Daniel has suffered, and that you have witnessed and suffered vicariously, but also are wow’d by Daniel’s courage and strength and your devotion. Prayers for both of you in your continued journey, and for complete remission—very soon.
Oh, I am so sorry to hear this! I have never had a complete remission since 2009 until I began a treatment with Venclexta (venetoclax), which I believe works particularly well for 11;14 translocations. I’ve been on Venclexta, Velcade, and dex since May, with no M-spike since July. Maybe that would a be a good drug to keep in your back pocket for Daniel! Best of luck to you both.
Tabitha, this is so hard to read. My heart goes out to you both. When we say myeloma is a sneaky disease, we mean it. I am wondering, too, how he could go from the watching and waiting to full-blown, hard-to-treat multiple myeloma. I am praying that his next tests will reveal a decline in the M-spike as well as the other numbers that need to go down. I know this is heartbreaking for the two of you, but praying that you will be stronger on the other end and that there will be better numbers waiting there for you!!
Thank you so much for all your kind comments. I am truly blown away by your encouraging responses, and I appreciate your thoughts and support more than you know!
Dana, thank you especially for the recommendation of Venclexta (venetoclax). We will bring that up with Dan's team when we see them.
Tabitha,
As I read your moving column, I could only think of how much you love one another. He has the strength to endure these horrible treatments because of you; and you have the strength to stand beside him because he must be one incredible man. Thoughts and prayers to you both.
I have not seen Darzalex mentioned in any of the consolidations and drugs Daniel has gotten. That drug combined with Pomalyst, which is similar to Revlimid, and dex, or substituting a proteasome inhibitor such as Velcade or Kyprolis in place of Revlimid and Pomalyst, is becoming a common myeloma treatment regimen. There is even some use of four-drug Darzalex protocols, such as Darzalex, dex, an immunomodulatory agent such as Revlimid or Pomalyst, and a proteasome inhibitor. Something involving Darzalex might be worth discussing.
Here is link to a press release announcing FDA approval of Darzalex in combination with Pomalyst and dex for relapsed patients.
https://myelomabeacon.org/pr/2017/06/16/fda-approval-darzalex-pomalyst-multiple-myeloma/
Darzalex in combination with Velcade, melphalan, and prednisone also has been approved by the FDA for use in newly diagnosed myeloma patients considered to be transplant ineligible:
https://myelomabeacon.org/pr/2018/05/07/darzalex-vmp-fda-approval-janssen/
Praying for a solution for Daniel.
Dear Tabitha,
I am wishing you and Daniel all the best with the ongoing recovery from his stem cell transplant and other health issues. I remember that recovery as not being very pleasant, for example having a really distorted sense of taste and smell, and having chemo brain too! However, eventually I felt a lot better from that time. The first year of my treatments was just the worst time, really!
You are both very brave and facing the future together. Thanks for sharing your story here also.
Stay strong. We are all with you in spirit. For every response you receive here, there are hundreds that stay silent but are with you on your journey. JB
Hello Tabitha,
I have been so touched by your news of Daniel's long struggle this year with myeloma treatments. I certainly will be praying for good results from his ongoing treatment. You are such an amazing advocate for him.
We are all unique on this journey of being diagnosed with myeloma. Your writing with the description of what Daniel went through with the chemo took me back to my stem cell transplant six years ago. Those high high-dose chemo drugs are considered the highest dose you can give to patients before stem cell transplants here in Canada. We call them The Hammer, drugs to knock out all the remaining cancer cells! I remember feeling so very ill, with all those sores in my mouth, throat, and all through my GI system too. Extreme nausea, vomiting, and diarrhea. I too got a blood clot in my lung. I felt like dying at that point, so I know just how Daniel felt.
I got through it all, however, and I am in remission, thank God. All of us on this journey have a different story to tell, and we all respond differently to the treatments our oncologists provide. I just hope and pray that Daniel will be in remission soon. Try to keep strong both of you. My heart goes out to you, Tabitha, as spouse and caregiver. It's so hard seeing Daniel struggle.
Diana.
Dear Tabitha,
My husband and I are so sorry to hear of Daniel’s current condition. I believe we have read nearly all of your previous columns and we were not prepared for this one. Our hearts break for you and Daniel and what he is enduring. From our very limited experience with and knowledge of multiple myeloma, we were shocked to hear how resistant Daniel’s myeloma has been to all his treatments. Daniel must be one incredible survivor to endure all of those extreme adverse side effects. Honestly, Daniel’s case of mucositis was the worst we had ever heard of. My husband has had some of the side effects you have mentioned but never to the degree that Daniel has endured.
I believe you made the right decision to go to a major cancer center, and that is a suggestion we make to all our friends and family who get diagnosed with cancer. Like you, we relocated to Houston for almost two years for my husband’s induction therapy, radiation, and autologous stem cell transplant. Since then, we have returned home, and my husband is on maintenance therapy.
We pray that your medical team can find the right treatment for Daniel and that his stubborn myeloma can get under control. During our four-year myeloma journey, we have seen the approval of several new drugs, a variety of new treatment options, and the promise of CAR T-cell therapy. While my husband is not currently a candidate for CAR T-cell therapy, we hope that it will be available for Daniel if necessary.
Again, we pray for you and Daniel in getting his myeloma under control and please know that there are lots of us out here on your team.
Praying for you both.
Tabitha,
Your strength is amazing. I'm praying for you and Daniel.
Our husbands are so similar, resistant to any treatment so far. I am thinking of you both in my prayers; how you find the time to write I have no idea, but so glad you have.
Dear Tabitha,
I'm thinking of Daniel and you and hoping that today is a better day.
Sylvia
Dear friends,
Thank you so much for all your notes of encouragement and your prayers. I am so humbled and thankful for this wonderful group here at the Beacon! No matter what we all go through, we are like a big myeloma family that hold out a virtual hand and a warm hug to say - "Hang in there! You can do it!" What a treasure!
Ron, I especially appreciate your links for the approved use of Darzalex. We considered going on the Darzalex regimen as an option before Daniel's stem cell transplant. I can't help but wonder if it would've brought Daniel into remission when the other drugs didn't... Perhaps it will be an option for his maintenance cocktail - we'll see.
Thank you all again for your thoughtful comments. I wish you all a very Happy Thanksgiving and good health!
Sincerely,
Tabitha
Tabitha and Daniel - I think of both of you always and pray for you often. The serenity prayer so often helps me through and I am prayerful that it will help you through too.
Dear Tabitha,
Im so sorry you and Daniel have had such a rough time, but I do want to give you some encouragement. I similarly had stable disease after the stem cell transplant (my numbers were actually a little worse than pre-transplant, but not enough to be significant). But they continued to improve for several months, and by the time I was 6 months post transplant I had a good response that ended up lasting 2 years. So you don't have to be depressed about the transplant results yet.
Secondly, after I relapsed, I went on Darzalex. My myeloma at this point is nonsecretory, so there are no peripheral markers to follow. So I had to have a bone marrow biopsy to check the results. And they were unable to find any myeloma cells, with the plasma cells at 2% (I was at 40% prior to starting treatment). This is not advocating for Darzalex, though it has worked for me. If you look through the forum here, there are people that failed to respond to Darzalex, just as people have failed to respond to Velcade, Revlimid, and dexamethasone (VRD/RVD), stem cell transplant, and other treatment options. My point is each of us have a different myeloma, and a different immune system, and we respond differently to treatment. I recently talked to a man who had never had better than a partial remission and had recurrent spinal fractures with perpetual pain with his myeloma for 8 years. He is now on medications I had never heard of and apparently has a stable remission that has lasted over a year and is out of pain without clinical progression of disease for the first time in 5 years.
I chose Darzalex because of the issue of side effects. I believe Darzalex is fairly well tolerated by most people, doesn't require dexamethasone (and I really hate taking dexamethasone), and only has to be administered monthly in the maintenance phase. I have decided over the last 3 years that quality of life is really important, and whether I have another 6 months or 10 years I want to enjoy it as such as possible. And like everyone else, I have had complications, including pathologic fractures, C. difficile complicating my transplant, and severe ischemic colitis on Revlimid. I was recently able to travel to India for 19 days with my daughter, visiting the Taj Mahal and going on safari seeing rhinos, Bengal tigers, and elephants. Every day I get up I am grateful if I feel well, and I try to enjoy the day as much as I can. Times when I can travel and do things are blessings. If I'm not doing well, then I try to enjoy the little things, like family, the birds in my backyard, and walking the dog. I know that's hard to do when you feel badly day after day, particularly if you are in pain, but it's the only advice I can give your husband to help him get thru these difficult times.
Listening to the list of Daniels complications is heartbreaking; I complained about my 20-pound weight loss with stem cell transplantation. But the other thing I have found with myeloma (both for myself and for others) is that things change fairly rapidly. One day you are sick as a dog, the next day you are doing much better (well it does happen the other way around as well, but I try not to think about that). There are many treatment options out there, including new treatments under development. So hang in there thru the bad times (now) because the good times may be right around the corner!
Have a Happy Thanksgiving, and best wishes,
Lynn
Tabitha, I'm thinking about Daniel and you. Stay strong and I hope strongly that there is a turn to the better soon. I cross fingers for your next appointments and treatments. I was following your columns all along. The Beacon community provides so much valuable comments and information. Thanks for sharing this so openly.
My significant other John was diagnosed with 17;53 high risk and we are just beginning the fight against this disease. Still not believing where it came from. Out of the blue it hit like a crater into our life planet.
The side effects of his KRD treatment are there but not completely terrible. I feel so sad when I hear what Daniel has to go through, and you too.
Just before the diagnosis I accepted a job in Houston in July, not sure why that happened. But seems destiny somehow. We are now in tooe hqnew in Phoenix and Houston. Next week we will be in Houston again to check in, as John will do his stem cell transplant there, if all goes well and he is in a remission.
Again, my thoughts are with you both.
Ellen
Hi Tabitha,
I was reading all the responses to your column and was surprised to see the comment from Dana regarding Venclexta (venetoclax). I was also prescribed this after Revlimid, Velcade and dex stopped working for me. I was diagnosed with multiple myeloma in 2012 with a 11:14 translocation and 17p deletion, and an M-spike of 3 g/dL (30 g/l). My M-spike is now at 0.05, the lowest ever. I had refused a stem cell transplant at the beginning of my illness as I feared it would not give me more time, maybe less. I encourage you to consider Venclexta. After all, what's your husband got to lose?
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