[Beacon Staff]

Weekly Poll - Had Early Transplant - Same Decision Again?

by Beacon Staff on Fri Jul 04, 2014 12:29 pm

This week, the Beacon is running two related polls in parallel. Both concern the issue of early transplantation -- that is, having an autologous (own) stem cell transplant within a year of being diagnosed with myeloma.

Both polls also ask whether people would make the same decision about early trans­plan­ta­tion that they originally made, knowing what they know now.

This poll is for myeloma patients diagnosed more than a year ago who decided TO HAVE an early transplant.

The second related poll is for people who decided not to have an early transplant.

Please answer this poll question if you meet all three of these conditions:

• You were diagnosed more than a year ago with myeloma (either smoldering or symtomatic)
• Your diagnosis led you to be treated for your myeloma soon after your diagnosis
• You chose TO HAVE an autologous stem cell transplant within a year of your diagnosis.

If you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf if they meet the criteria just described.

As always, feel free to post comments, thoughts, or feedback about this week's poll in the space below. They can be very useful to other readers.

[Joy]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by Joy on Sat Jul 05, 2014 7:17 am

My transplant did not do much for me. My numbers stayed pretty good for a while (4 or 5 months), but by day 60 I had plasmacytomas growing.

However, there was no way of knowing that at the time, so I figure, if I hadn't done the transplant, I would have always wondered if the transplant would have changed that for me. So, I feel that I made the right decision for me at that time.

Now that I've had to try different drugs to deal with my relapse and have had days where I don't feel too great, I think that it would have been much more difficult to go through the transplant feeling weaker. I was definitely stonger last fall than I am now.

Of course, I have a very aggressive myeloma, so it's different for everyone.

[juliusb]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by juliusb on Fri Jul 11, 2014 12:44 pm

Diagnosed at age 65 in 2005. Brutal shock. I did not even know of the existence of such a disease. A condition. It is not an illness. I waited and thought about alternatives, but decide to go "the chemical route" and soon started chemo. Melphalan and prednisone.

I was not prepared for the initial reaction, which felt like a severe case of influenza. In 24 hours, I had recovered form these symptoms. I had little or no emotional support. The numbers dropped slowly for a while and then reversed. Simultaneously I was having radiation for a plasmacytoma and bone deletion. The melphalan was discontinued after three months and I was put onto thalidomide. This worked dramatically well for the first several months, and then stopped being effective.

I suggested to the oncologist I was seeing at the time that I should have a stem cell transplant. I had started reading as much as I could on multiple myeloma, and was aware that this was a possible treatment. He vetoed the suggestion and only after I had called a professor of haematology at a research hospital, did I decide to have that intervention.

The preparation was a little frighting, and when I was given the heavy infusion of melphalan and started similar symptoms to my first experience with it and then within a short while started loosing all my hair and skin and also developed a high fever, I was admitted into hospital immediately and placed in intensive care and isolation. After stabilising my medical condition, I was given the infusion of stem cells.

By this time I was almost completely non compis mentis and was not aware of much that was going on. I recall being very nauseous. My taste ability had disappeared and I did not eat anything for several weeks. Eventually I was told that I would not be discharged unless I put on weight. I had lost about 25 kg (30%) of my original weight by then. I told the professor that he might as well discharge me as I was not going to put on any weight in the hospital, which he did on the same day.

My recovery was steady with some incidents of readmission to hospital, and I did not have to have any chemo for several years. I had a period of treatment again up to about a year ago, but nothing since. My most serious problems are peripheral neuropathy and loss of energy.

[Nestlake]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by Nestlake on Sun Jul 13, 2014 2:08 am

This is difficult to respond to as I received stem cells from my identical twin so for all intent it was considered an autolungus transplant.

[Beacon Staff]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by Beacon Staff on Sun Jul 13, 2014 4:41 am

Hi Nestlake,

As we understand it, receiving stem cells donated by an identical twin is typically viewed as a special form of allogeneic transplantation, since the cells are still being donated by someone else. Thus, we would suggest that you not answer the poll question.

(As you probably know, there's actually a special name for transplants involving stem cells of an identical twin. They are called syngeneic stem cell transplants.)

Hope your transplant went well, and thanks for the posting.

[Chuck324]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by Chuck324 on Fri Jul 25, 2014 7:42 pm

I was diagnosed last January 2013 along with needing an unexpected triple bypass. I was 65 yrs old. I had a low risk case of multiple myeloma – no lesions, no DNA issues. I had never been sick in my life so this was like being ran over by a Mack Truck! 2 major issues at the same time.

Once I got through heart surgery, by March 18th I started Velcade / dex. I had 3 shots and then I had a severe allergic reaction to Velcade. After recovering thru all that, I was put on Kyprolis the first of June. It's worked wonderfully well! It was tolerable for 4 months with mild nausea.

In March and April I had lost 30 lbs from heart / allergy stuff, so over the summer I started gaining weight back.

I underwent bone marrow transplant (BMT) on November 13, 2013.

Blessedly, I fared pretty well through it all. My numbers went to 0 and I am in remission. Blood tests are remaining in good zones. This was worth it all for me and my wife. I credit God first and then my BMT doctor for my treatment thru the melphalan treatment and then the infusion of my own cells.

We have high hopes for remission, so this year I am getting stronger every day and am on NO treatment.

So for me, the BMT worked great.

[Peggy]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by Peggy on Thu Oct 23, 2014 8:41 pm

I was diagnosed in September, 2013. I had 3 rounds of Velcade, Dex and Revlimid. The response was very good. I had the SCT in March, 2014. It was extremely hard for me. My numbers now are great, it has been 7 months and I feel I made the right decision. I am not taking any drugs except Zometa infusions every 6 weeks.

[GeorgeLJurak]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by GeorgeLJurak on Tue Jan 13, 2015 5:24 pm

Peggy, you should probably be on 10 mg of Revlimid as maintenance therapy 6 months after your transplant. Discuss this with your oncologist.

God Bless, George

[Dencox44]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by Dencox44 on Mon Feb 09, 2015 9:03 am

Hi George and Peggy,

I was diagnosed in 2012 (February / March), had just turned 56. My PET scan showed more than 2 dozen lesions. After 4 months of Cytoxan, dex, and Velcade, complete remission and then SCT 6 months later.

It is now 13 months since SCT. I too am on Zometa only – no Revlimid. Was recommended, but I chose to feel well as long as possible and avoid the side effects of Revlimid. Seemed that the results of studies with maintenance therapy only lengthened post SCT remission by months.

I guess it is a personal decision, but I thought an informed one.

[Mary dahl]

Re: Weekly Poll - Had Early Transplant - Same Decision Again

by Mary dahl on Fri May 01, 2015 2:29 pm

I chose to have one because I am healthy and strong now and soon to be 65. I fear if I wait I may lose the opportunity. I am trying to keep all options available. I wish the trial on this were complete. My doctor feels I will have a longer remission and no maintenance drugs after ASCT. We will see? I am scheduled for June of this year, and started treatment the end of January of this year.