[IndianFriend]

Should my father have a stem cell transplant?

by IndianFriend on Sat Jul 18, 2015 2:57 pm

To give you a brief background: My father age 59 was diagnosed with multiple myeloma in February 2015. At the time of the diagnosis, he had severe back pain. He was not even able to change sides on bed. His D4, D5 and D7 vertebrae had destructive collapse (fracture). His body weight was 39 kg (86 lbs) and height 161 cm (5' 3"). His creatinine was 7.5 on a scale where 1 is upper limit for being normal. He was also much dehydrated as he did not even like the taste of food and water.

I was told his myeloma was ‘advanced’ stage, which I think can be referred as ‘Stage 3’ because it has renal involvement. He never needed a dialysis till date. He has well controlled diabetes for 15 years.

He had 5 cycles of chemotherapy (bortezomib, dexamethasone, and cyclophosphamide) in day 1, day 4, day 8 and day 11 format, with rest of 10 days after each cycle. He had complete response (CR) and doing better now.

His back pain is at 20 percent of what he felt at the time of diagnosis. He uses belt for support to move. He can walk and also drive sometime, if needed. His creatinine varies from 3 to 4. His weight hovers around 44 kg (97 lbs). His height is around 161 cm (5' 3") (2 cm lost due to vertebra collapses). Considering his weight and look, I will says he looks weak. However, it has taken 2-3 years for his health to come down.

After 5th cycle of chemotherapy, he was evaluated for stem cell transplant (SCT). He passed the heart and lung tests, but his kidney’s GFR is 27.

Now, his Kappa Free Light Chain 72.10 (3.30 - 19.40 being normal). his Lambda Free Light Chain 29.68 (5.71 26.30 being normal). He was found positive for del13q14.3 (signal detected in 10% cell) through FISH test, at the time of diagnosis. Don't know what del13q14.3 results mean.

His doctors says there is no proof available that in such case a patient will benefit from a SCT, as he will be given a reduced dose of 140 of melphalan (not 200). However, he personally believes that my father should benefit from stem cell transplant because treatment has im­proved his condition till now. But, due to his kidney functioning at just 20 percent of a healthy man, mortality risk in stem cell transplant is double (5%) for him.

I have taken the opinion of doctors from other prominent hospitals, their advice are as follow:

Doctor 1 : Mortality risk 20%. That means 2 out of 10 such patients will succumb to problem arising due to a stem cell transplant. Remaining 8 will benefit. How much they will benefit can not be said. But his quality of life will be affected. If your father is doing better now, why to make his life worse? I won’t chose a stem cell transplant for my father in such a situation.

Doctor 2 : Mortality risk 20%. Benefits (in term of relapse free period ) cannot be predicted. Not going for SCT cannot be called bad decision in this case.

Doctor 3 : SCT is the standard treatment available for multiple myeloma. Patient do benefit from SCT. If you don’t go for SCT, you will also be spending the almost same amount of money for maintenance over 2 years. SCT can get you rid of maintenance for good amount of time. We suggest in favour of SCT.

My humble request from all of you is, please give me as much as information as you can so that I can make a better informed decision. Also, please answer the following specific questions:

If you have gone thru stem cell transplant

1. How are you doing?
2. Are you diabetic?
3. How was your kidney doing at time of SCT. What was the creatnine or GFR?
4. Could you please tell me what major complications problems you have faced since then
5. How long did it take you to be normal or to feel that same as you felt before SCT.
6. Did you have complete response or partial response?
7. Was you given maintenance even after SCT, if yes how long?
8. How much relapse free period you had?
9. Country of treatment?
10. Any other relevant information.

Or, if you chose not to go thru SCT

1. How are you doing?
2. What make you choose this path?
3. What was the maintenance treatment you were given? Or any other treatment?
4. How much relapse free period you had?
5. How much time has gone since the event when you had to decide for SCT.

Thank you for reading.

PS: Should you want to read results of any of his test reports. Please let me know.

Ashish

Last edited by IndianFriend on Sun Jul 19, 2015 11:35 am, edited 2 times in total.

[JPC]

Re: Should my father have a stem cell transplant?

by JPC on Sat Jul 18, 2015 5:21 pm

Hello Friend:

There is a link you should read, which is the Mayo Clinic guide to multiple myeloma. I tried to quickly find the link, but it's down now, but you can search it later. When you search it and read it, keep in mind that these are "guidelines", and multiple myeloma is a very complex condition, and you might have to adjust what it says based on your personal situation, but it is very respected as far as guidelines are concerned.

I note that your father did reach CR with 5 rounds of CyBorD, or cyclophosphamide, Velcade (bortezomib), and dexamethasone. That actually is a superior response. I will point out to you an option, but, not being a doctor, I cannot explain in any way that this would be the best option or even a good option in your case.

Just, an uneducated, non-medical opinion, going into an ASCT with only 20% renal function is risky (as your doctors have pointed out). See if you can go on a good maintenance program that you father can tolerate. Look to do ASCT on "first relapse", at that time, renal function might have recovered a little bit.

Based on the limited info you provided, I think this might be the MSmart (Mayo Clinic) approach.

Best of luck to you and yours and Regards, JPC

[antelope1225]

Re: Should my father have a stem cell transplant?

by antelope1225 on Sat Jul 18, 2015 6:47 pm

Hi Friend.

I am 58 now, I was 55 at the time I went into an ASCT with kidney function at about 20%, Creatinine over 3 (your father's is worse!). I had a beta 2 microglobulin of 8.5 and kappa free light chains 1050 (3-25 mg/dl being normal) If beta-2-microglobulin is over 5.5, international staging says a patient is Stage 3, so I probably had a very poor prognosis.

I responded to Velcade, dex and thalidomide, but as soon as I stopped taking them (oncolo­gists had me quit medicine to get strong for ASCT), my kappa free light chains bounced back up to 400, within 10 days.

I had the 140 mg melphalan administered and kidney doctors watched me. I did have graft versus host disease and was put in the intensive care unit for about 5 days, but then I got out and I started healing up. I did not have a complete response, so they put me on 5 mg Revlimid every other day starting about 70 days post transplant.

16 months after my ASCT, I started eating a very low carbohydrate diet (at my oncologist's suggestion) and my kappa free light chains (my cancer markers) started to improve!

It has been over 3 years since I was diagnosed and almost 3 years since my ASCT, and I have had very good quality of life. My kidneys are up to 45% function, and my creatinine is down to about 1.3.

I continue to eat very low carb (basically no carbs except vegetables) and I take multivitamins and curcumin every day. I have a doctor's appointment Tuesday so I will know more

I do not think I would be where I am today without the ASCT. I have very good quality of life.

Cathy

[Jonah]

Re: Should my father have a stem cell transplant?

by Jonah on Sun Jul 19, 2015 1:13 am

Hello IndianFriend,

Since this might influence some of the feedback you get, I thought I would ask where your father is located. Is he in the U.S. or somewhere else (perhaps India, based on your user name)?

Also, is your father being treated by a myeloma specialist, or just a general oncologist or hematologist-oncologist?

[IndianFriend]

Re: Should my father have a stem cell transplant?

by IndianFriend on Sun Jul 19, 2015 2:10 am

Hi, antelope1225, JPC, Jonah

Thanks for information and your suggestions.

Jonah, my father is being treated in a private corporate hospital in India, nearby New Delhi. What I know about this hospital is that it is at par with other big (government / private) hospitals in India. I have seen people from various countries coming for a treatment. However, that may be a result of a good PR.

A brief profile of my father's doctor :

"He is a specialist of blood and blood related disorders including leukemia, myelodysplastic syndromes, lymphomas, multiple myeloma, amyloidosis, bone marrow/ stem cell transplant, bleeding and clotting disorders, thalassaemias and sickle cell anemia, aplastic anaemia, complicated anemias amongst others."

I hope that answer you question. I will be happy to give more details.

Regards,
Ashish

[IndianFriend]

Re: Should my father have a stem cell transplant?

by IndianFriend on Sun Jul 19, 2015 2:22 am

Hi antelope1225,

You said you had "graft versus host". It looks you did not have autologous stem cell transplant because that generally happen in allogeneic stem cell transplant. I may be wrong.

I am more worried because of my father's health and I wonder if he can tolerate the side effects well. Could you please tell me how was your general health at the time of ASCT?

My father is 44 kg with 161 cm height and 59 years old. For Indian man of his height and age, 55-60 kg weight is considered ideal. His blood pressure is normal. He is not bedridden but not very good. He is doing just fine.

Regards,
Ashish

[TerryH]

Re: Should my father have a stem cell transplant?

by TerryH on Sun Jul 19, 2015 7:14 am

Hi Ashish,

Cathy can confirm this herself, but, based on her previous postings here in the forum, I'm almost certain that she did in fact have an autologous stem cell transplant. If you view her profile, you will see a link that will take you to all her postings here in the forum. (You can do the same thing for any registered user.) I would not be surprised if many of her postings provide additional information about her condition at diagnosis and how she responded to the treatment she received.

Some doctors will use the term "graft versus host disease", even though it may not be technically correct, for a condition known as "engraftment syndrome" that can occur after an autologous stem cell transplant. See:

"Engraftment syndrome" (forum discussion started Apr 22, 2011)

Good luck sorting out your father's treatment options.

[IndianFriend]

Re: Should my father have a stem cell transplant?

by IndianFriend on Sun Jul 19, 2015 11:29 am

Thanks for the clarifications TerryH

[jaren2004]

Re: Should my father have a stem cell transplant?

by jaren2004 on Wed Jul 22, 2015 7:55 am

Good Morning, IndianFriend.

I understand what you are going through. I had to make the decision for my mother as to if we should go ahead with the transplant or not.

My mother was diagnosed at 54 years old with IgG kappa. She had 50% myeloma cells ac­cording to the results from her bone marrow biopsy. She went through 5 rounds of Revlimid, dex­amethasone, Velcade. She was responding really well to those medications.

However, in between her last round of Revlimid and preparing for testing for the transplant, another SPEP test was done and her numbers were starting to rise pretty significantly. I took this to show me a sign of how aggressive the disease was. I felt at that moment that the trans­plant was the way to go. Before the transplant, the results from the bone marrow biopsy showed 26% myeloma cells.

Advice from her oncologist was to try another medication to possibly get her numbers down a bit more. But the transplant doctor said let's not take a chance on an induction medication not working or taking another round of Revlimid that could decrease the chances of getting a successful transplant. Needless to say, I took the advice of the transplant doctor.

My mother is also diabetic and has been for numerous years, very controlled. She takes met­formin in a pill form. Like your father, my mom could barely walk when all of this started. She developed horrible neuropathy in her legs and femur area. She had so much pain, that I had to order a special recliner chair just for her to sleep in, because lying down was too painful.

Fast forward, she has gotten her stem cell transplant on June 22 and was discharged from the hospital on July 8 (17-day hospital stay). My mother did a great job. She kept strong even when she felt weak. (The key to doing well is eating even if you don't feel like it, walking, and staying hydrated). She only had about 3 days of being miserable. That was largely because of throat pain from the melphalan and severe nausea, which caused vomiting which in turn irritated her throat further.

My mother is now at home doing everything for herself. Her pain level has decreased signif­i­cantly. She feels as if she has been given a new life. Now of course we don't really know if the transplant was really a success until 100 days post transplant; the bone marrow biopsy will give us direction on if it was a success.

In my opinion, I think your father should go ahead with the transplant. Only because you don't want to have the chance to do it now, and not have the chance to do it later.

Either way, I wish both of you the best!

[IndianFriend]

Re: Should my father have a stem cell transplant?

by IndianFriend on Wed Jul 22, 2015 12:00 pm

Hi jaren2004,

Thanks for the information. Knowing the experiences really help to make a mind.

Jaren, how were your kidney doing at the time of transplant?

I am also looking forward to hear from more and more people who had limited kidney functions and went for transplant.

Regards,
Ashish