[jessicav5034]

Spouse with stage 3 multiple myeloma at age 27

by jessicav5034 on Tue Jan 05, 2016 9:45 pm

Hello everyone,

So I'm sure anytime anyone is diagnosed with cancer, you look most for success stories to kinda ease any pain and give hope, so that's why I have decided to write.

My spouse was diagnosed with stage 3 multiple myeloma at age 27. Every doctor he en­counters call him an anomaly, frankly because of his age and his protein mutating into some­thing called cryoglobulinemia. He didn't fracture a bone or have any of the usual symptoms except for this. His body, when it was exposed to cold, would shut down and he would begin to have streaks of white around his body. In other words, his blood would coagulate, freak out, and he would get no oxygen to his brain or lower extremities nor hands.

They first diagnosed him with Raynaud's disease, which has all the same similarities, but it turned out to be something way serious.

He has done 1 cycle of cyclophosphamide, Velcade, and dexamethasone (CyBorD), and is going to start Revlimid, Velcade, and dexamethasone (RVD) pretty soon depending on what the results of the chemo he is doing. He is scheduled to do an autologous stem cell transplant in April 2016 that has given not much hope. The stem cell transplant physician was realistic with us and states that the cancer would come back in less than 5 years due to the aggressive nature of the myeloma and also recently finding out from a genetics test that his mutated another chromosome, making it even more dangerous. We were told the cancer will return with the transplant and would have to do another and over time his body will not be able to handle it.

In other words, WE have been super positive, and he makes light of the situation with jokes that I can't handle times, but it is his nature to joke. I think I really am writing because I'm interested to know how many people relapsed after the transplant, or have survived from an autologous transplant, to give him some hope.

I would really appreciate it and I know if he was reading this he would want everyone to know that he is active duty military with 2 tours in Afghanistan, and he is also a very proud Texan!

We have so much support at home and WE thank you in advance for any advise at all! Happy New year to all!

[Sue88]

Re: Spouse with stage 3 multiple myeloma at age 27

by Sue88 on Wed Jan 06, 2016 9:40 am

Hi!

I am so new here and trying to figure all this out myself, but my sister happens to work for Johnson & Johnson, and just last month a brand new medication was released and they say it is the closest thing that has come to a cure for multiple myeloma. It is called Darzalex (dara­tu­mu­mab). Cur­rently it is being used on patients that have failed with other treatments.

Like I said, I am so new to this, but wanted to pass this along.

God Bless

[CindyBrown]

Re: Spouse with stage 3 multiple myeloma at age 27

by CindyBrown on Wed Jan 06, 2016 10:52 am

Hi Jessica,

My guess is that you will hear from a lot of people and my thoughts are with you. Don't give up hope, there are many young patients and patients with aggressive disease who are doing well. First and foremost, make sure your husband is seen at one of the top transplant centers in the world and one that handles lots of multiple myeloma patients. Please tell us where you live so we can help direct you.

I was given a poor prognosis with auto stem cell transplant due to the aggressiveness and some rare abnormalities also. I went to Seattle Cancer Care Alliance and they suggested and got approved a tandem auto - allo transplant (8 weeks apart). Allo transplants have greater risks, but they also have the potential to be curative. I am 9 months out and currently have no signs of disease. 9 months isn't that long, but I am on a good path. There are a handful of us on this forum who have gone that treatment route and all are doing well.

Please post more questions - others on this site are much more scientific than I am, but most important is where your husband is being treated and by whom!

Cindy

[Ellen Harris]

Re: Spouse with stage 3 multiple myeloma at age 27

by Ellen Harris on Wed Jan 06, 2016 11:22 am

It sounds like you need a new doctor! As Cindy said, it is important that he be seen by a multiple myeloma specialist, preferably at a center that does a lot of transplants, both auto and allo.

The landscape of multiple myeloma is changing. Last year, we had 4 new drugs approved, 3 of which are in entirely new categories. The impact of these drugs will be tremendous. Any physician who gives you time frames as far as relapse or overall survival is concerned is not being fair. No one really knows how long people will respond to treatment or a stem cell transplant, and no one knows how they will respond to the newer agents. If you live in Texas, and you can get there, I would take him to MD Anderson. It is a world-renowned multiple myeloma center.

Do you have any of his bloodwork available to post? Has he had a bone marrow biopsy? If you post his results, there are some very knowledgeable people on the forum who could give you some insight.

Does he have any bone pain, kidney damage or history of infections? Is he anemic?

Please do not despair. There are many excellent treatment modalities these days, Without knowing anything about his case, but due to his age, he may make an excellent patient for an allo transplant, which in first response, can be curative.

Mark11, please weigh in here!

Best of luck, and please keep us posted!

[JPC]

Re: Spouse with stage 3 multiple myeloma at age 27

by JPC on Wed Jan 06, 2016 11:41 am

Hello Jessica:

I am very sorry to hear about your family's situation at such a young age. Just to very briefly expand on Cindy's comments, an auto transplant is difficult in many cases, but it's almost routine and for young people would have a risk of death of less than 1% from the procedure. Many people have done it, and if it needs to be done, it's really nothing to be scared about, but it's no fun either.

For very young patients, as Cindy stated, there is a procedure otherwise used only on rare occasion called an allogeneic transplant, which is something to consider in your case. In an allo transplant, you get someone else's stem cells, not your own. The benefit is that it is possible that the stem cells can actually kill off all of the cancer, and actually result in a cure (very long-term remission). That is called graft versus myeloma effect. The downside is risk, as the foreign stem cells could attack the body (graft versus host disease) to a very bad result.

It works best for identical twins (also very rare, of course). In any case, given your husband's young age, it is something you all should look at closely. I understand it works best if you first have very good induction and an auto, and do the allo right after the auto, as Cindy describes. Some­times its difficult to find a matched donor. Definitely something you all should look into. Good luck.

[SlimMoe]

Re: Spouse with stage 3 multiple myeloma at age 27

by SlimMoe on Wed Jan 06, 2016 10:57 pm

1st - Thank your husband for his service.

2nd - As a fellow Texan, I second the recommendation that you check out MD Anderson.

3rd - Since I am relatively new to this and am in the smoldering stage, I can't give any advice. But I've been reading here a lot and there are some really inspiring stories where individuals appear to be near death at diagnosis and years later talking about being back to full health.

4th - That business about it coming back in 5 years ... Big deal. He'll have 5 good years and with the new drugs and treatments coming online every year, who knows? There might be a cure or better treatment before the 5 years are up.

5th - Age matters in almost everything. This is to his benefit.

Good luck.

[NStewart]

Re: Spouse with stage 3 multiple myeloma at age 27

by NStewart on Thu Jan 07, 2016 2:32 pm

You are in a tough situation with your husband being so young and having such a rare presentation of myeloma. You say that he is in CyBorD right now and will be switched to RVD soon. Is there a reason for maybe switching him so soon? Where is he going for treatment now? Is it at the VA? If you can I would suggest getting a 2nd, or 3rd, opinion from other myeloma experts around the country. First, since you're in Texas, go to MD Anderson. Then, you might also consider the Myeloma Center at the U. of Arkansas since that's not too far from Texas.

It is really important that your husband is being treated by a myeloma specialist who only treats and does research in the area of myeloma. There are so many new drugs that target differrent parts of the myeloma cell that are being FDA approved and ones that are in clinical trials that might be appropriate for your husband. A specialist will be the one who is most up to date on these new drugs and of what clinical trials your husband might be a candidate for. No matter what, your husband needs a doctor who is a little more positive about your husband's prognosis.

All the best to your husband in receiving the treatment that is successful for him and for you as his caregiver.

Nancy in Phila

[Tracy J]

Re: Spouse with stage 3 multiple myeloma at age 27

by Tracy J on Fri Jan 08, 2016 8:55 am

Hello. Sorry you need to be here, but I am so glad that you found us.

I just wanted to chime in to agree with Nancy. It is quite important that you get a second opinion from a myeloma expert. Myeloma is rare enough that "regular" oncologists wouldn't be ex­pected to know all the little details of diagnosis, prognosis, and treatment. But the devil is in the details, and they make a big difference to the patient.

[jrfedez]

Re: Spouse with stage 3 multiple myeloma at age 27

by jrfedez on Thu Jun 02, 2016 9:27 pm

I was diagnosed in November 2015, stage 3, double trouble – multiple myeloma and amyloidosis – at 45. Started immediately Velcade, Revlimid, and dexamethasone (VRD) for 7 cycles, right now zero trace of the disease, for both multiple myeloma and amyloidosis. Currently doing my auto transplant, day 0 starts tomorrow and all is good. I feel very well both physically and mentally.

Listen to me very carefully! DO NOT LOSE HOPE! You guys are gonna overcome this. If there is a good time to have this illness, it is now. Tell him that he is gonna have a very long life and that he is not gonna die from this disease. Try always to think positive and to be active physically .


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