[K_Shash]

Stem cell harvest at 68 & transplant at 75 - why bother?

by K_Shash on Thu Jan 15, 2015 7:15 pm

Hello everyone,

I have been following many threads on the Beacon forum for almost a month. I got a lot of valuable advice and learned a lot about the techniques (used by different myeloma clinics) that have made the first month of my induction chemo quite tolerable.

I posted an introduction last month, "K_Shash's RVD induction therapy experience", and also participated in the discussion, started by Peggy B, on how some of you made the decision to have an (early) transplant. I am a few months away from 68 and wondering if the ASCT is for me at all.

I scanned through a lot of discussion threads and I did not find any discussion about this "age-related" topic:

I am almost 68 (old age?) and let's assume that I am not opting for an early transplant. Would it make sense (under the current state of the medical science, i.e. with the current 'state of the art' medical devices, drugs and procedures) to even plan a transplant around the age of 75?

I am under a lot of family pressure to get my stem cells harvested and stored. I asked about what this involves on another thread and was referred to The Complete Guide to Stem Cell Harvesting by goldmine848. This guide and ensuing discussion on that thread were very helpful. However, I came to the conclusion that the stem cell harvest is a week-long painful ordeal!

My personal concerns are:

1. IF I won't need a transplant till I reach 75 (major "IF", because I am not sure how quickly I may get a relapse after this induction therapy, AND assuming it is going to give me a near complete remission, but
2. Based on about 8 or 10 cases (that I know of, second hand, from the doctors treating these cases), a 8 - 10 years without relapse on maintenance therapy after the induction therapy (at least for for my IgG - kappa myeloma) is not uncommon. Therefore, I should not have a relapse till I reach 75 - 77.

Would it make sense for me to go through a 3 to 6 month long transplant ordeal at 75+ (possibly weakened by the current induction and maintenance therapy for 7 years)? (For example, based on all the timeline and some other details, Tom Brokaw's complete response was achieved with chemo, too. That may also be due to him being around 74.)

OR

Would it be better to go through another induction therapy boost and get a few more years of remission and enjoy life on another long period (5+ years) of maintenance therapy?

Even if I opted for the transplant at 68 or 69, the chances are I would get a relapse in 3 to 5 years. And I am not at all sure what my physical strength and endurance would be after the 6 months of this induction chemo. Would I be able to play golf regularly, and go for 3 -5 mile walks, keep up with the grandsons in their skiing, camping, etc.? I think I can do that once or twice a week now during this induction phase, and I am sure I can do that when I am in the maintenance phase.

So far I have tolerated the RVD Therapy well, but I have read in some of the threads how patients developed major side effects and could not use some of these drugs after a few months.

Quality of life consideration:

My preference would be to relatively enjoy life and manage all my activities during the 3-6 months while undergoing the induction therapy (instead of undergoing a transplant) around the age of 75; rather than try and gain a few years well past 80 (when one may be languishing in a retirement home!).

Anyway, this 'multiple myeloma monster' has stopped me from wondering "what if" I were to live long and get dementia after 85 or 90. Same for not having to plan an independent living in a retirement community on a golf course. Also, these options seem better than living on dialysis, which I was afraid I may have to do after the earlier scare about kidney failure (high protein level in the urine).

Until recently, I had been wondering about how my wife and I would make the most of our time after we reached 80+. The myeloma monster had not entered the picture until recently. However, now I am concerned about being as healthy and active as I had expected to be at 75 or 80, given the toll this chemo (induction and maintenance) therapy is going to take on my body. And I am not sure I want the "scars of transplant" slowing me down around 75.

That there are at least 8 or 10 old time patients, not counting many that posted their non-transplant experience on a recent thread, continuing to do well on just the maintenance therapy (after the initial induction chemo and never any transplant) for 8 - 15+ years under the care of a couple of physicians I know, helps my 'take a reasonable risk' nature.

[K_Shash]

Re: Stem cell harvest at 68 & transplant at 75 - why bother?

by K_Shash on Thu Jan 15, 2015 7:19 pm

Hello again, everyone,

The following got left out during my 'copy and paste' from the draft:

I started writing this post a week ago but decided to wait till my monthly blood tests showed that my kappa free light chain reading dropped almost 90% and it would seem that I would reach a "normal" level (lambda free light chains are doing just fine) after this 4-week cycle. Therefore, a CR (complete remission) is within reach.

To sum it up, I am concerned about:

1. The toll the transplant would take on me IF I harvest the stem cells in a few months and opt for the transplant when I am 72 or 73
2. The consensus is that there still would be a relapse in 3 to 5 years after a successful transplant.
3. I will have to remain on maintenance therapy after the transplant anyway!
4. There are a lot of success stories in the personal accounts by many in their 50s, but some others who have had a relapse soon after the transplant and some who have not fully recovered. Some had no choice, since they could not tolerate some of the drugs. I have not kept count.
5. If I do not see much chance of a transplant in the next few years, why bother with harvesting the stem cells? Yes, that technology has vastly improved and would continue to do so. But the main reason for early relapse is that all the plasma cells are not filtered out. And there are almost a dozen promising drugs on the horizon that may make this nasty cancer "curable".

This is a subjective analysis and decision making. However, I would appreciate all the guidance I can get from your personal experiences and thoughts, as I am relatively new to this whole subject.

[antelope1225]

Re: Stem cell harvest at 68 & transplant at 75 - why bother?

by antelope1225 on Thu Jan 15, 2015 9:16 pm

If I were you, I would have my stem cells harvested because it leaves you options. You may never use them, but I would hate to want to get a transplant and not be able to. If nothing else, it gives you peace of mind that you have not painted yourself into a corner. My oncologist thinks that someday they will find that what we call multiple myeloma is actually several different cancers - that is to say, everyone is different, so it is pretty hard to know what YOUR body will do.

I didn't think harvesting was a horrible ordeal. I had two Neupogen shots each day for several days (then went to the zoo in afternoon), they put in a port on the second day, and then I had several days where I got two more Neupogen shots in the morning and then was on a machine (much like a dialysis machine) for several hours. That part was completely painless - your blood is going through the port and it doesn't hurt.

I think the hardest part was probably getting the port put in, but I would do it.

At 68, you are not that old, but a transplant is very hard on your body, and I agree with your decision to wait until you feel it is right.

[Mark11]

Re: Stem cell harvest at 68 & transplant at 75 - why bother?

by Mark11 on Thu Jan 15, 2015 10:04 pm

Hi K_Shash,

Interesting post. Thanks for your contributions to the forum. Just curious, why do you think:

"3. I will have to remain on maintenance therapy after the transplant anyway!"

There are long term myeloma survivors that have not used maintenance.

"Would it be better to go through another induction therapy boost and get a few more years of remission and enjoy life on another long period (5+ years) of maintenance therapy?"

Many of the myeloma patients whose blog and forum postings I read seem to complain about different side effects from maintenance therapy. If you achieve an MRD negative response, why not try for a DRUG FREE remission period. I associate DRUG FREE remissions with excellent QOL -- not never ending cycles of Revlimid, etc.

Just curious how you came to the conclusion that patients on maintenance therapy are likely to "enjoy life".

I am a younger patient, so I went the immunotherapy / allo route, but I am curious to see how the more typical myeloma patient in your age bracket responds to this question. I agree with antelope1225 that not harvesting takes away a potential therapy option you may need. Also, her point:

"My oncologist thinks that someday they will find that what we call multiple myeloma is actually several different cancers - that is to say, everyone is different, so it is pretty hard to know what YOUR body will do."

is "spot on" IMO. I was not planning on doing an auto, but it seems like patients should at least harvest their stem cells to keep all options open. For example, in the future, they may be able to add a form of immunotherapy to an auto transplant that can improve the outcome substantially. A patient contributor here at the Beacon, Dr. Jan Stafl, recently posted that he did an auto and received CAR T-cells after and got into remission. If he had not had any stem cells, he would not have had the opportunity to get into that trial.

Mark

[Mister Dana]

Re: Stem cell harvest at 68 & transplant at 75 - why bother?

by Mister Dana on Fri Jan 16, 2015 2:23 am

Hi, there, K_shash.

I hope you will read my story in the forum thread "Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient)" (started July 26,, 2014). Note the following:

1. I was 67 years old when I did my ASCT, about your age;
2. Like you, I found that induction chemo can be tolerable;
3. If you are in good health when you show up for stem cell collection, it may turn out to be no big deal -- not a painful ordeal by any means; my lucky self played the tourist for a week between collection and transplant, the CVC is hidden under your shirt.

So I agree with the other commenters that the big question is what to do after collection -- immediate SCT, or wait and see.

Oh, and Mark is right, there may be no chemo needed after the transplant ... You just don't know.

[NStewart]

Re: Stem cell harvest at 68 & transplant at 75 - why bother?

by NStewart on Fri Jan 16, 2015 2:26 pm

You ask a lot of good questions, but no one can answer them for you. That is your decision to make and then not try to second guess what you have decided. All of the points that you raised for not harvesting stem cells because of your current age and possible time when you might consider a transplant are good. But all of the suggestions for collecting now for possible use later are also good. The one about the CAR-T treatment, which is in phase I trials, is an excellent reason for harvesting now. In myeloma patients, the altered T-cells are infused after a person has had a stem cell transplant. So, if you think that you might ever want to look into this trial, or later editions of this trial, that might be reason enough to collect your stem cells.

I had my transplant at age 63 and reached complete response 7 months after the transplant. I opted not to do maintenance therapy so was drug free for 35 months before restarting due to a relapse. I loved those months without any treatment, other than Zometa infusions.

We all have to look at our own circumstances, our own disease, and our goals for the various levels of treatment, or lack of treatment, in order to make these major decisions. At this point, I would advise you to wait for the results of your current regimen. That may help you to decide what is the best course of action for you.

Nancy in Phila

[mikeb]

Re: Stem cell harvest at 68 & transplant at 75 - why bother?

by mikeb on Fri Jan 16, 2015 6:49 pm

Hi K_Shash,
You've gotten some very good advice from previous commenters here. But I can't resist adding my two cents.

You are really asking three big questions here:
(1) Stem cell harvest or not;
(2) Early SCT or not; and
(3) Maintenance therapy or not.

Questions (2) and (3) are arguably the two "million dollar" questions regarding frontline myeloma treatment today.

To me the stem cell harvest question is a pretty easy one - there's minimal risk, and it keeps your options open as others (and you) have said. I think it makes sense to "just do it."

The other two questions are much tougher. I can't recall if you have any chromosomal risks from FISH testing or not. Regardless, you might take a look at the Mayo Clinic's mSMART Guidelines that came out early last year (http://msmart.org/newly%20diagnosed%20myeloma.pdf). Also the Beacon Forum thread about those guidelines might be of interest to you (https://myelomabeacon.org/forum/mayo-clinic-msmart-guidelines-multiple-myeloma-t3066.html).

Finally, while it is good to think a couple moves ahead in this chess game, it is also important to keep in mind that multiple myeloma is a very tricky adversary. I think it is unwise to assume you will get 5 years or whatever PFS. You really need to take things one step at a time, and keep as many of your options open as possible.

What do your doctor(s) say about all of this? These are topics that you definitely should be discussing with your medical team, sooner rather than later.

Mike

[Dano]

Re: Stem cell harvest at 68 & transplant at 75 - why bother?

by Dano on Sun Jan 18, 2015 11:38 am

Hello K_Shash,

You make a lot of assumptions on longevity and myeloma that just don't match the statistics. You got some great advice here from previous posts. You ask the question "harvest at 68 & transplant at 75 - why bother?"

The reason you need to consider harvest and transplant is to be able to give yourself treat­ment options as your disease progresses. You are making the assumption that induction therapy and maintenance will give you a CR for an extended period of time. You are also assuming that you will be healthy enough to be a candidate for stem cell transplant at the age of 75. I hope you are lucky enough and your assumptions are true, but do your research before you make a final decision.

I am a year younger than you, and I had my stem cell transplant 3 months ago. The harvest process is no big deal and it is not painful. The Neupogen can cause some bone pain, but it is tolerable and short lived. We spent most of that week touring and going out to eat. I was lucky and the transplant went well, with minor side effects.

Also keep in mind the cost of collection and transplant. Medicare will pay for one collection and transplant prior to age 70. The cash price can be anywhere from $400,000 to $800,000.

I wish you the best.

[K_Shash]

Re: Stem cell harvest at 68 & transplant at 75 - why bother?

by K_Shash on Sun Jan 18, 2015 3:23 pm

Thanks to all of you who took the time to respond to my rather radical question.

In a way it is an age-related question: If I don't opt for an early transplant at 68, would a delayed transplant be feasible at all? Unless the delay is only a couple of years.

Needless to say, the safest choice would be to to harvest my stem cells and have them stored for a future transplant or two. However, Dano just pointed out a whole new "age-related" concern about the Medicare (and other Medicare supplemental insurace) coverage.

I am not at all convinced that an early transplant is for me.

My concerns about transplants:

C diff complication (Larry's Stem Cell Transplant)

Also the concerns raised by the following (a few more difficult ASCT experiences can be found in the last poll #1):

......
Re: Steve Mohr's Stem Cell Transplant by DanielR on Sat Jun 21, 2014 4:28 pm

So, for anyone considering whether to get a transplant or not, be sure to read Dr. Berenson's work. He gets as good a response with a no transplant approach as do the clinics recommending 2 transplants within 30 days. I wish I had known about his research before I'd made my decision. I might still have decided to get the transplant, but, then again, I might not have.

I had responded miraculously well to the RVD protocol pre transplant. I actually do mean miraculous. I went from knocking on death's door with chromosome 17P deletion, IgG Kappa, and M-spikes all off the charts, combined with a massive systemic infection. None of my doctors expected me to live. That was December of 2012. Today I'm off all multiple myeloma meds. My RBC remains below normal, but everything else is within normal ranges.

Would I be in this place if I had decided against the transplant? Obviously I cannot know.
......
Re: How did you decide whether to have a SCT or not? by JBarnes on Tue Jan 06, 2015 7:07 pm
It should be noted that there can be long lasting side effects from the SCT. I'm two years post SCT and still suffer from the neuropathy I got during the SCT. It's really impossible to tell if the SCT made a difference or not, as my numbers were exactly the same pre- and post-SCT.
......

Mr. Dana's was the 'text book case' and I am glad he has set an example for all of us. His detailed explanation of how the centrifuge separates the light weight stem cells is just an example of how educational his account is to me. I read all the transplant journeys that the Beacon Staff has listed. This was a very convenient place to start my own studies on this subject. Thanks, Beacon Staff.
I spent some time to copy and paste all the pertinent discussion and logs in my own files so I can access and digest the information at my own pace.

I was quite concerned about the challenges of the transplant after reading Tropicdiver's (like all of you, I am very concerned about his well being) , Kim T's and Steve Mohr's threads. My treatment would be similar to Kim T's, in that I, too, would be at Stanford for the harvest and for the transplant. I live about an hour's drive away, too, and would have a similar traffic to contend with.

I also remember reading that someone had to opt for an early transplant since the HMO or insurance would not cover the cost of stem cell storage.

Back to my specific case after the recent test results:

1. No cytogenetic concern. "Only slight concern about trisome chromosome 11", apparently not too much be concerned about. I should have a good response to the chemo, long term.

2. Diagnosed in the early stage. Last year it would have been "smoldering level", based on the progression of the protein in urine.Tests. In a way, saved a year's anxiety. My oncologist said that I should have no issues for 5 years, at the onset of my chemo, based on all the data he had at that time. This was in the 'physician to physician' discussion in my absence.

3. Closest case would be Leealli's mother's transplant: "My Mom's Inpatient Stem Cell Transplant at Roswell Park".
Her mother just returned home. IF I harvest the stem cells soon and need to get the transplant in a few years, I would be around 72. I have been reading all the discussion on that topic and continue to keep up with all the updates.

4. The first 4-week cycle of chemo resulted in almost a 90% drop in my KLC-Free reading and I am 90% sure that at the completion of my next 4-week cycle it would be in the "normal range". The lambda chains were below the normal rage but are already creeping up and may result in the normalrReadings overall, including that for the KLC Ratio.

My oncology team' advice:

I have had mixed signals: the younger specialist saying the "standard of care" is about four more cycles of chemo (induction), quickly followed by transplant. My primary oncologist, who has treated many more myeloma patients, is much more flexible (based on the early conversations) and had indicated it would be my choice. Unfortunately, my primary oncologist has been sick and could not attend my monthly meeting last week.

My wife is the medical director at a small hospital. Similar 'mixed opinions" from my wife's colleagues. The younger staff oncologist is for an early transplant. The 'visiting professor', a university oncologist (specializing in myeloma, leukemia and lymphomas) with 30+ years of experience and who sees over 100 myeloma cases every year, is of the opinion 'wait and see how the chemo works'. And of course, no harm in harvesting and storing the stem cells soon. She has the patients (never had transplants) on maintenance therapy for over 10 years, still using thalidomide and unwilling to try anything else, since it has been so successful. All these opinions are similar to what Peggy B wrote she got when she asked "How did you decide to have a SCT or not".

I will have a routine 'follow-up' visit with my primary oncologist in early February and I hope to discuss all my options available to me at my HMO with him or with the administrative office.

All this information from all of you is very useful for me in making my own final choices about my future treatment. Most of the "expert medical advice" is more 'text book' and not based on the personal experience as all of us share here. And as many of you have pointed out here, many doctors and even general oncologists are really not myeloma experts.

It has been already pointed out that the myeloma patient is in charge here. But that brings the responsibility of educating ourselves, seek advice and come to logical conclusions.

Financial concerns?

Dano wrote: "Also keep in mind the cost of collection and transplant. Medicare will pay for one collection and transplant prior to age 70. The cash price can be anywhere from $400,000 to $800,000."
.........

Thank you so much for pointing this out, Dano. I was not aware of that. I am well covered by my wife's insurance (HMO) for now and she should be continuing her employment for 7 to 10 more years. She loves what she does as a medical director at a small hospital (after many other 'director' and 'chief' titles) and for her, her work is not a 'job' in the usual sense of the word. Ideal situation when you love what you do. However, in case I have to switch to a Medicare supplement plan, we may have a major financial challenge for such a 'pre-existing condition'. I'll start researching on this subject.

I just read in another article cited by DallasGG's post in the Topic "Re: Did you do maintenance therapy after your SCT?", that a 'continuous therapy' after transplantation is recommended, anyway.

In my particular case, I have coped quite well with the weekly 20 mg dex + Velcade and daily 15 mg Revlimid. I had a lot of fatigue and lethargy for about 10 days and I am convinced now that my allergies (stuffy nose, slight fever and swollen eye, etc.) were the culprit and not the chemo. I have been my usual energetic self again, except for the day of and the day after the dex-Velcade Wednesday.

It seems many of the maintenance therapy doses are in the range of what I have tolerated quite well for the past few weeks. And I have to wonder why go the transplant route to eventually get back to the same dosage as maintenance therapy. Of course, wishfully, I am expecting a complete remission and my IgG, KLC-Free, etc. will be all down to the normal range in a few more weeks of this chemo. And I hope to get lower dosage for the maintenance, thereafter.

My own thinking is now leading me to conclude that the real choice for me, at my age, is going to be transplant or no transplant?? Fortunately, I have a few more months of this induction chemo before I have to decide.

K_Shash