[EF11]

Husband diagnosed at 43

by EF11 on Mon Jan 05, 2015 2:12 pm

Hello,

I want to provide an official introduction since I have been lurking here for a couple of months after my initial panic post in November when we first ever heard the term multiple myeloma.

My husband is 43 and was diagnosed in November with Stage III multiple myeloma. He has IgG, light and heavy chain. He had tons of lesions, but only one large one in his hip that caused him the pain which led to the diagnosis. He was very anemic, but his kidney function is perfect. His FISH came back with no abnormal mutations (not sure I quite understand the FISH results, or if they ran a full FISH test) and he had 22% myeloma plasma cells.

He is responding very well to treatment so far, with all his numbers going in the right direction. He is in the middle of his 3rd cycle of RVD [Revlimid, Velcade, dexamethasone] - 2 weeks on, 1 week off - at Mass General Hospital (MGH) in Boston. We love and trust his myeloma specialist.

Initially, the doctors were concerned about the fragility of his hip and thought he may need to stop treatment for a hip replacement surgery. That fear has subsided (for now), although he is still on crutches to protect the hip.

The plan is 4 or 5 cycles followed by an auto stem cell transplant. Then I believe 3 or 4 more cycles of RVD consolidation treatment before going on to 10 mg Revlimid maintenance. He is also in a bone strengthener clinical trial with the goal of getting a new drug approved for myeloma patients that is given as a shot rather than IV drip. My husband is getting both, one as a placebo, as the trial is double blind.

I have been following many of your stories and am very grateful for the insights, advice, and caring comments on the Beacon. One issue that has been of particular interest is the idea that, for younger patients, an allo stem cell transplant at first complete remission may be worth the risks. Our doctor does not agree with this approach, and I wonder whether we should pursue a second opinion (we also see a Dana Farber specialist, but they are very much aligned in their approach). I completely trust our team, but also feel like we have to play our cards just right during this initial treatment phase in order to prolong my husband's overall survival and quality of life.

I have also been following the biking thread as my husband is an avid rider. He was planning on doing the Pan Mass this August but likely won't be recovered from the transplant in time to train up for it.

We have 3 young kids, the little one still in kindergarten. It is overwhelmingly awful to think about my husband not being around to see them grow up and through their life events, let alone my self-interest in growing old together. My husband is very optimistic that all will be fine - a cure is close at hand and this will not take him down. His attitude has helped me overcome my sadness and fears to some extent.

My best wishes to everyone on here! It is an unfortunate path we all find ourselves on but this is a wonderful resource and community.

Thanks.

[CindyBrown]

Re: Husband diagnosed at 43

by CindyBrown on Tue Jan 06, 2015 10:29 am

Your husband's story sounds like mine - right down to the hip pain, which led to the diagnosis. I was 48 when I was diagnosed in April 2014 and had normal FISH but everything else very abnormal.

I am scheduled to have an allo transplant within a couple months of my auto transplant, which should be next month. I am at Fred Hutchinson (Seattle Cancer Care Alliance), where this is believed to be the best course for younger patients with aggressive disease.

There are a couple threads in the Beacon about allo tranplants. Perhaps you could find a center closer to you that would also consider this by polling the others who have gone this route.

Good luck and keep us all posted!

[Mark11]

Re: Husband diagnosed at 43

by Mark11 on Tue Jan 06, 2015 1:57 pm

Hi EF11,

You wrote:

I completely trust our team, but also feel like we have to play our cards just right during this initial treatment phase in order to prolong my husband's overall survival and quality of life."

With respect to quality of life, I have found that quality of life (QOL) has been one of the main benefits of my allo transplant. It is not an easy procedure to go through (I had myeloablative conditioning), but allo recipients typically enjoy good long term QOL. Beacon Medical Advisor Dr. Shain recently published a study that shows how QOL first drops, but, at 6 months, tends to return to what it was prior to transplant.

I did my allo 8 months after diagnosis and 4 months after an auto. I would rate my QOL as "very good" prior to and "very good to excellent" today. The only thing that keeps me from saying it is "excellent" is that I had 3 compression fractures from the disease at diagnosis and I experience intermittent back pain. I notice no therapy-related side effects currently. The only drug I currently take is Zometa quarterly.

Quality of life

For allogeneic HCT recipients (n=12), mean FACT-G scores were 82.4 at baseline (n=11), 68.9 at day +30 (n=12), 79.1 at day +90 (n=8), 84.4 at day +180 (n=11), 78.6 at day +270 (n=11), 79.3 at day +360 (n=5), 77.3 at day +540 (n=6) and 87.1 at day +740 (n=3). Mean FACT-BMT total scores were 109.4 at baseline (n=11), 92.5 at day +30 (n=12), 106.1 at day +90 (n=8), 115.8 at day +180 (n=11), 106.1 at day +270 (n=6), 106.3 at day +360 (n=5), 102.9 at day +540 (n=6) and 115.4 at day +740 (n=3) (Figure 5). QOL data were not collected for the autologous HCT cohort.

The health-related QOL is a vital component of comprehensive peri-transplant care.38 In this small cohort of patients, the observed trajectory of reported QOL may be consistent with previously reported results.39 Following an initial decline in some patients, most returned to or exceeded pre-HCT-QOL by 6 months. These data complement the reported survival outcomes and facilitate the understanding of the patients’ experience.

http://www.nature.com/bmt/journal/v48/n9/full/bmt201337a.html

For me, a chance to be cured and enjoy very good long term QOL made an allo transplant in first complete remission (CR1) an easy decision. As I have mentioned before, I am a believer in immunotherapy, and allo transplant early in disease course is the only form of immuno­therapy that has shown long-term success for myeloma patients.

I would caution you about basing decisions on:

My husband is very optimistic that all will be fine - a cure is close at hand and this will not take him down."

Unfortunately, there are few examples of myeloma patients who get cured after relapsing. Hopefully, he will not relapse, but, unfortunately, most myeloma patients ultimately relapse. Finding a therapy with a high percentage chance of curing relapsed patients would be an incredible breakthrough. I sincerely hope I am wrong and one comes soon, but I certainly would not count on it. There have been no new CLASSES of drugs approved since 2006.

Best of luck moving forward. Choose the path you and your husband are comfortable with. All choices have positives and negatives associated with them. I would have always felt that I did not take my best chance of being cured if I did not do the allo in CR1. If I had not done the allo, I would have have always thought "what if I had done the allo when I had the opportunity." I am definitely in the minority, however, thinking allo in CR1 is the way to go.

Mark

[EF11]

Re: Husband diagnosed at 43

by EF11 on Wed Jan 07, 2015 12:32 am

Cindy and Mark - Thanks for your feedback. Just curious, was an auto-allo the treatment plan your specialists proposed right off the bat? Or did you request an allo after your own research?

Does anyone have a link to a study supporting the allo at CR1 rather than down the line? It's interesting how the myeloma specialists have their different approach to induction treatment. My understanding is that, at MGH, an allo would not be considered at this stage for myeloma, but that it is a potential treatment down the line and the doctor even suggested that my sister-in-law get tested to see if she's a good match.

Cindy - I hope the best for your outcome, hopefully permanently cancer free after your allo! I'll watch for your updates and will be rooting for you from the east coast.

Mark - your story is an inspiration. Thanks for sharing and continuing to support those of us just getting started.

Thanks again.

[CindyBrown]

Re: Husband diagnosed at 43

by CindyBrown on Wed Jan 07, 2015 10:59 am

Mark11,

It's nice to connect with someone who has received the course of therapy I am scheduled for. The only difference is that my allo is scheduled to be non-myoablative with maintenance therapy in between the two (I assume Revlimid or thalidomide [Thalomid] but don't know for sure). Can you explain the reasoning for your allo also being myoablative?

I would also like to know what your main lab results were before and between the two tranplants. Was your allo donor a perfect match? One of my brothers is a 99% match and that is my plan. Apparently I carry a rare antigen that has kept them from finding a perfect match. I was told this antigen means the difference between a 7% and 8% rejection rate which is odds I am willing to accept.

Thank you, Mark.

Cindy

[EF11]

Re: Husband diagnosed at 43

by EF11 on Wed Jan 07, 2015 1:08 pm

Mark,

I also wanted to ask you about Zometa being the only drug you are on.

You are not on any medication for GVHD? I thought that recipients of donor (allo) transplants all had to take lifetime meds. Perhaps you just meant myeloma meds?

Either way, that's excellent!

[Mark11]

Re: Husband diagnosed at 43

by Mark11 on Wed Jan 07, 2015 3:21 pm

Hi Cindy,

Do not forget that I was not planning on doing an auto - just induction to CR and right to allo. High dose alkylators (autos) are an effective therapy for some myeloma patients. I / my doctor wanted to use the therapies that are associated with longer survival, and high dose melphalan is one.

Because I am a younger, otherwise healthy (other than this "little" myeloma thing!) patient, my doctor did not think I would have any problem using myeloablative conditioning. It appears that I have a different subtype of myeloma than you do. Mine acts like acute leukemia. It will go into remission but come out quickly and be difficult to treat once I had lost remission. My doctor was actually worried about me relapsing in the time between auto and allo.

It sounds like you have very stubborn disease, as it sounds like you may not be in CR and you have used a good amount of therapy. My induction was 4 cycles of Velcade / Doxil / dex, and that dropped my plasma cell percentage from 90% to 10%.

I did a full restaging after induction and between my auto and allo. I had a low M-spike prior to auto, but I cannot remember what it exactly was. It was zero after the auto. I had 10% plasma cells prior to auto. I was in CR (no M-spike) but MRD positive after auto. I was not in stringent CR after auto - FLC ratio was not normal.

Tandem auto - non-myeloablative allo is much more common for myeloma than using myelo­ab­lative conditioning for myeloma. Allos are a personalized therapy. I am sure your doctors are using the conditioning they think is best for your case.

My donor was a "perfect" match based on major histocompatibility antigens. I have mentioned before that I have a female donor immune system. The pair of female donor to male recipient is associated with a high risk of extensive chronic GVHD. Using myeloablative conditioning made it possible for me to use ATG (antithymocyte globulin) to decrease my risk of having extensive chronic GVHD. My doctor's opinion was that extensive chronic GVHD was more of a risk for me than using full conditioning. If I had had a male donor, my doctor told me she would have done my transplant differently. Allo transplantation is not a "one size fits all" therapy.

I hope that answers your question.

Mark

[Mark11]

Re: Husband diagnosed at 43

by Mark11 on Wed Jan 07, 2015 3:57 pm

Hi EF11,

Zometa is the only drug I currently use. I used anti-rejection meds for 6 months and have been off of them for 3 years. I used anti-everything the first 6 months after my transplant though!

Recipients of solid organ transplants need to use anti-rejection meds for life, but most allo recipients do not. They can do an allogeneic transplant where the patient has basically no chance of having chronic GVHD. It is called a fully t cell depleted allo transplant. For example, Robin Roberts did one of those, and you can see how great she is doing. I used ATG and my transplant is considered a partially t-cell depleted allo.

As I mentioned in my response to Cindy, my initial treatment plan was Velcade-based induction to CR right to full allo. However, my insurance company only pays for tandem auto - allo, not induction to allo. Since I did not have an extra $600K lying around, I did the tandem!

Allos work better in CR1 than any other time. Here is a piece of an ASH publication about transplants that gives the "basics" about them.

"Significant post-transplant problems can result from toxic effects related to the preparatory treatments, GVHD, infections, and relapse of the underlying disease. Continued research is leading to further improvements and better survival results. The long-term outcome of HCT procedures depends on whether or not the patient is in remission. While 50-80 percent of leukemia patients can be cured by allogeneic HCT if performed during first remission, the expectation for success is markedly reduced for those whose HCT is carried out in more advanced stages of their disease. Likewise, the long-term results of autologous HCT are strongly influenced by the amount of cancer in the patient's body at the time of transplantation, with relapse being the leading cause for treatment failure.

Social studies conducted over an extended period of time indicate that the quality of life in the years after a patient receives HCT usually ranges from good to excellent, and, ultimately, the majority of patients are successfully reintegrated into their personal and professional lives."

http://www.hematology.org/About/History/50-Years/1526.aspx

It is only recently that myeloma patients could get into remission prior to allo transplant, so we only have small studies from individual centers on patients that did allos early but not in CR. We really do not know what the percent chance of cure for an allo is in the novel agent era with patients in CR prior to transplant. Here are links to a couple of studies showing the difference between early and late allo for myeloma.

https://ash.confex.com/ash/2011/webprogram/Paper37067.html

https://myelomabeacon.org/resources/mtgs/ash2013/abs/2154/

Mark

[LauraScot]

Re: Husband diagnosed at 43

by LauraScot on Wed Jan 07, 2015 6:40 pm

Hi EF11,

"Just curious, was an auto-allo the treatment plan your specialists proposed right off the bat? Or did you request an allo after your own research?"

I was offered an upfront allo transplant by my docs (UK NHS), but it was as part of a trial (LenaRIC). Treatment was a reduced intensity conditioning (RIC) allo following an auto SCT

The stage II trial ended December last year, as scheduled, but my doctor said results so far were good, so they may start offering the treatment as standard.

Best wishes for your decision. I did a lot of reading and a long time thinking about it before going ahead with mine at first CR. I found that, once I made my decision to do it, the constant worrying and thinking about it went away, and I just focused on doing my best to get through it. I am happy I made the right decision for me. But, as Mark says, it's not for everyone.

I am due to stop my immune suppressants next week, and I'm looking forward to it

Laura

[EF11]

Re: Husband diagnosed at 43

by EF11 on Thu Jan 08, 2015 8:09 pm

Mark,

Thanks for going through the trouble of re-posting those articles, which I knew I had read and I'm sure you have posted to this site before. It is intriguing and it would be so nice to know now the data that will come to light as the years unravel!!

We have an appointment with Dr. Richardson at Dana Farber on January 28 and we will discuss all of this. We also have had the opportunity to speak with a couple brilliant scientists who were involved with developing Velcade. One of them is also an oncologist / myeloma specialist, and he agreed that it's such a tough call now with the success of the novel agents at achieving remissions and some exciting treatments on the horizon (i.e.,T-cell therapies). He also feels that allo remains a good potential option for my husband for at least another decade (he suggested that up to 55 it is less risky - obviously dependent on patient). I know it may not be as effective upon relapse, but good to know that it's out there.

Laura,

Thanks for sharing. What great news that you are just about done with the meds! Definitely worth celebrating. Our myeloma specialist told us that allo is currently only done in clinical trials for newly diagnosed myeloma patients. She pretty much dismissed the idea entirely, saying we may certainly explore it down the line. I pressed her on the first CR advantage, but she was not moved based on the risks of allo versus combos of other treatment options, including those not yet developed / tested / approved. Without the Beacon, I wouldn't even know to ask these questions, and to hear from real-life (happy) survivors of the treatment is amazing.

I just want to make sure I understand, to the best of our abilities, and with the information we have now, the various options and their risks and benefits. I appreciate all the information people have shared!!