[Beacon Staff]

Weekly Poll - No Early Transplant - Same Decision Again?

by Beacon Staff on Fri Jul 04, 2014 12:20 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Both polls also ask whether people would make the same decision about early trans­plan­ta­tion that they originally made, knowing what they know now.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 NOT to have an early transplant.

The second related poll is for people who decided 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 NOT 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.

[manuel]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by manuel on Wed Jul 16, 2014 7:13 pm

For the case of my mother at the question no early transplant same decision again? I answer literally no, because the Revlimid-dex dosen't work and cause her an intestinal complication with removal surgery. Now, after two transplants, she reach a VGPR.

Beside what happened to my mother, no one of the physicians who I have consulted agree with the transplant because of her age (69 year's old at the time of her first therapy). In fact, it was not our decision.

On the other hand, if Revlimid-dex working, I think I would have vote the other option.

Good luck to everyone here.

[jet]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by jet on Sat Feb 07, 2015 4:37 am

I'm 1.5 years post-diagnosis (stage 3 with kidney involvement ) and chose not to have the high-dose chemo / stem cell transplant, which was recommended after 4 months of weekly CyBorD (cyclo­phos­phamide, Velcade, dexamethasone). I felt very weak at the time – physically, emotionally, and mentally – and I have no regrets. I have no doubt high dose chemo was not right for me at that time.

[Ron Harvot]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by Ron Harvot on Sat Feb 07, 2015 6:17 pm

It has been 6 years since I was diagnosed. I elected not to have a transplant and have no regrets. I have been in a remissive state with low level disease but have not missed any appreciable work and have led an active and athletic life style. I had a few infections and was hospitalized with meningitis for a couple days. However, I don't fear traveling and have been to Europe and plan to return again this year. Many who have had transplants have fears of travel and are more susceptible to infections. Today I did a 73 mile bike ride and then came home and raked leaves and other yard work for 2 plus hours. I feel about as good as can be expected with this disease. I feel that, if and when I relapse, I have a lot of options.


Ron

[Mark11]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by Mark11 on Sat Feb 07, 2015 7:25 pm

Hi Ron,

Where did you come up with this?

"Many who have had transplants have fears of travel and are more susceptible to infections."

I did 2 transplants in 2011 and my Immunologic Panel numbers are all in the normal range and have the same risk of infection as those in the general population. On the other hand, it is well known that patients taking never ending cycles of steroids and Revlimid have a higher risk of infection that the general population. Any data that show long term transplant survivors "fear travel" and "are more susceptible to infections" than myeloma patients on never ending cycles of dex and Revlimid?

Mark

[Ron Harvot]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by Ron Harvot on Sun Feb 08, 2015 10:27 am

Mark,

I got it from a couple of threads/columns on this site.

This is one:

Steve Mohr, "Mohr’s Myeloma Musings: Using Common Sense After A Stem Cell Transplant," The Myeloma Beacon, Jan 22, 2015

There was also a thread seeking travel advice.

I don't doubt that endless rounds of Revlimid are not good for the immune system. Revlimid is hard on the immune system. (I am not on it).

However, Revlimid and dex are also the go-to maintenance drug for transplant patients, who are often on it for long periods. So maintenance is maintenance. The issue with the transplants, from the discussion on these boards, is the need for re-immunization and thus the fear of catching an illness before the immune system is reconstituted.

Ron

[Mark11]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by Mark11 on Sun Feb 08, 2015 11:36 am

Hi Ron,

That is not a peer reviewed paper. That is an opinion piece from a columnist. Here is a recent peer reviewed paper showing non-transplant patients having a slightly higher risk of fugal infections than transplant patients.

"Therefore, our study aimed to define the role of antifungal prophylaxis, the epidemiology, risk factors and outcomes of IFI in patients with multiple myeloma receiving novel agents."

"Overall 372 patients received treatment for multiple myeloma at both centers and were followed for a median of 24 months. Nine patients (2.4%) were diagnosed with 9 episodes of IFI: 3 were proven, 2 probable and 4 possible according to EORTC/MSG criteria. Rates of invasive mold infection and IA were 0.8% (3 of 372) and 0.3% (1 of 372), respectively. The IFI rate was 2.2% (3 of 135) following ASCT and 2.5% (6 of 237) for patients who had not received an ASCT. The rate of IFI in patients who received 3 lines or more of therapy was 15.0%. Patients' characteristics are shown in Table 1."

BW Teh, "Invasive Fungal Infections In Patients With Multiple Myeloma: A Multi-Center Study In The Era Of Novel Myeloma Therapies," Haematologica, Jan 2015 (full text).

How come it is not higher in the transplant group if the transplant is what is causing the problems with the patients immune system?

Lets take a look at a Beacon article discussing a peer reviewed paper.

"Myeloma impairs the quality and quantity of immune system proteins that an individual produces. As a result, more than 75 percent of myeloma patients will experience marked immune system depression, becoming vulnerable to potentially life-threatening infections. In fact, infections are the leading cause of death among myeloma patients.

Some multiple myeloma treatments, however, further contribute to immune system suppression and infection risk. Drugs which halt the uncontrolled proliferation of myeloma cells can simultaneously suppress even healthy immune system cells.

This is particularly a concern with the newer myeloma drugs. “Be aware of the risk for infection with the new agents,” Dr. Elias Anaissie, a coauthor of the study, states. “We now have much more powerful anti-myeloma agents, particularly when used together.”

Illnesses common during treatment with newer therapies include the herpes simplex virus (HSV) and varicella-zoster virus (VZV). Pneumonia and bacteremia, the presence of bacteria in the blood, are also common with patients in early stages of treatment.

In the study, Velcade (bortezomib), a powerful immune suppressing drug, was linked with increased risk of VZV when compared with dexamethasone (Decadron). The study recommends that patients being treated with Velcade receive preventative care, such as antibiotics or vaccines."

"New Study Highlights Myeloma Treatment Infection Risks," The Myeloma Beacon, Sep 25, 2009.

Referenced study: M Nucci & E "Infections in Patients with Multiple Myeloma in the Era of High-Dose Therapy and Novel Agents," Clinical Infectious Diseases, 2009 (full text)

I could post more links to peer reviewed papers.

You have mentioned in the past needing monthly IVIG. Do you still need it? Needing IVIG is a sign of having a poorly functioning immune system. I was on it for 4 months back in 2011 after my allo when my immune system was down. Despite two high doses of chemotherapy, I now have a an immune system that appears to be functioning perfectly normally and has sustained a molecular response to myeloma.

What therapy do you think caused the need for IVIG for you - Revlimid, Velcade, dex, or the combo taken in never ending cycles? Or is it that myeloma patients have a malfunctioning immune system from the disease? Or is it some combo of all of them?

Mark

[Ron Harvot]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by Ron Harvot on Sun Feb 08, 2015 2:09 pm

Mark,

It was not my intention to get into an argument with you. You asked me what was the foun­da­tion for my statement, and I gave it to you. Your response is to be dismissive, since it only consisted of patients' opinions and experiences of people who participate on this board. The point I was addressing was fear / concern about infection, and that is what was being expressed. You are, I guess, questioning the rationale of their concerns and opinions.

I am happy that the allo has worked so well for you. I am of the belief that young patients should seriously consider an allo, as it is currently the best chance for cure. In other posts I have expressed that position. It is still considered a highly risky procedure, but, for the right patient – who is young and otherwise healthy – such risk is worth considering.

I did not go down the allo route or the auto transplant route but am comfortable with my decision and have no regrets. Has it been a completely smooth road? No, and I have had some issues with infections in the past. I am still on IVIG and have not had any infection issues since the summer of 2012. I had open heart surgery in August last year to replace my aortic valve but have bounced back from that without any complications.

It was my decision not to go the auto transplant route and, 6 years out, I believe I am doing well. I am getting ready to go out for another ride of about 30 miles today since the weather is so nice down here (will hit mid 70s F / low-to-mid 20s C).

Ron

[Nancy Shamanna]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by Nancy Shamanna on Sun Feb 08, 2015 2:51 pm

Hi,

I agree that a myeloma patient must be careful to avoid infections. Even if we have had our vaccinations updated after a transplant and have good blood counts – in the sense of normal RBC counts and WBC counts – it doesn't hurt to be cautious!

This year, the 'flu' shot did not cover all the varieties of flu circulating, and also, as has been pointed out in other threads of the Forum, there are measles outbreaks in North America and also in Europe. Anyone could be susceptible to these viral infections, but as we patients are people who have been immune compromised, it's good to be careful. We wouldn't want a 'spot check' to turn up measles for ourselves or those close to us!

[zara]

Re: Weekly Poll - No Early Transplant - Same Decision Again?

by zara on Sat Mar 28, 2015 6:28 am

Hi Ron,

Thanks for sharing your experience. I am very glad to hear that you are living so well. I, too, don't plan to do the ASCT and was curious to know of other people who may have made the same decision.