Jendunk,
We are in similar boats. I have Stage 1 multiple myeloma that was caught by "accident" in an xray that I had done to look at a sprained collar bone (unrelated). I am 47, very healthy (otherwise), had no previous symptoms of multiple myeloma. The xray detected a lesion in my arm, followed by a full body xray that barely showed 2 small almost imperceptible lesions in the skull. Needless to say I was in shock when I heard that I had cancer, and I had never heard of multiple myeloma before this. For me, the treatment is worse than the disease, at least for now.
The M protein spike at diagnosis was 30.1 g/L (3.01 g/dL) and the bone marrow biopsy showed a 75% malignant cell count or however one describes it (I am still a multiple myeloma newbie I guess). I am on week 5 of a 12 week (4 cycle) cyclophosphamide / bortezomib (Velcade) / dexamethasone (CyBorD) chemo treatment, and tolerating it quite well so far (fingers and toes seriously crossed!). I am also taking quite a few natural therapies, following the advice of a naturopathic oncologist who says he would do the same chemo treatment as me as well as the natural stuff. I feel pretty good about it, though it's a full time job now taking care of myself. I elected to stop working 2 of my 3 jobs, not knowing how I would feel or react while doing this round of chemo. So far so great, and I know I am fortunate.
I also have a good prognosis with no negative genetic factors.
On Tuesday, I got the good news that my total protein count had dropped significantly. Te full results are pending, but we can assume this means the M protein spike has gone down. Yay! Only 4 weeks in and the oncologist had warned me that it would take 2 cycles to show a drop.
I have serious doubts that a stem cell transplant is the way to go for me, though I have decided to go ahead with the harvest at the end of these 4 cycles, just in case I do decide to go ahead with it. I want to be intelligent about this, so storing stem cells is the way to go I think. I am delaying the transplant for sure, and still in discussion with my oncologist and the hematologist about this.
At first, admittedly, I wanted it delayed from early June when the doctors wanted it to be (following the protocol), to mid September so that I could go on a cruise with my elderly mother who booked the holiday pre-diagnosis. My cousins are also joining us. If I did the stem cell transplant in June, I know it wouldn't be smart to go on a trip trapped on a boat with hundreds (thousands?) of people only weeks after I get home. This is a trip of a lifetime, my mom needs me to help her on the cruise getting off and on and around, and it would break her heart if we had to cancel, though of course she would understand why!
This all sounds a little silly in a way, possibly putting a cruise in front on my health. But, life is now, and I believe that I have time, and that I am in a good position or state of health to wait and see how this round of chemo plus all the other stuff I am doing works without going full force with the melphalan and all the other drugs that go along with the procedure.
Also, we live 5 hours away from the hospital where I would be an outpatient staying at a lodge for out of town chemo patients, and the stem cell transplant will be incredibly disruptive to my family, to say the least. (Of course it is for everyone, but I have to think of how much support will I be able to have?). We live on a farm, and my husband really wants to be with me as much as possible during the whole process (and I want him there too!). He realistically would not be able to be there full time until November. Our finances depend on our work, we are self employed with no savings, and our work is in full swing until November. So, now I want the stem cell transplant delayed until then, if I do it at all. I think the hematologist is going to shake his head when he hears this - he was supportive of me going on the cruise if it meant I would return from holiday and go straight to the hospital, mid September.
I would do it anytime in a heartbeat if I knew that I had no other choice, and we would adapt and figure out the details.
Then I realized that I also wanted more time to think about the transplant. Is it necessary, especially now that even after 4 weeks, my M protein has decreased dramatically? I am concerned about the risk of serious, life threatening side effects, and probable / possible and not talked about long-term side effects (damage to healthy cells and organs), considering that I don't seem to have an aggressive form of multiple myeloma. I am also researching alternative therapies that could potentially have the same results in putting this cancer into remission, but not finding many stats on success rates. Also VERY interested in some new therapies that are being tested such as immunotherapy.. There is debate within the multiple myeloma world around this topic, whether stem cell transplant is necessary considering the success of bortezomib.
Am I crazy to delay this procedure until November, a full 4 1/2 months after the time the doctors had it in mind, so that it disrupts my family and our finances the least? I gather it means I would have to do more pre-transplant chemo, and that means traveling for 2 hours one day a week to get the subcutaneous shot that takes 5 minutes. So much for living in the country ...
I want to follow your decision making process, and will try to keep you posted as well.
And I make NO judgments on anyone who decides to go this route one bit. I think it needs to be an individual decision however, and it seems to me that my doctors are treating me as they would anyone who has multiple myeloma, and I question that.
Best of luck, and keep on keepin' on!
gillian
Forums
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smithygilly - Name: Gillian
- Who do you know with myeloma?: me
- When were you/they diagnosed?: February 26, 2016
- Age at diagnosis: 46
Re: Pros and cons of delaying stem cell transplant
Hey Smithy,
Ya, my father is in the same boat as you; he is about three months into his four month cycle of CyBorD (it's working) and questions whether a transplant is really worth the risk.
I noticed the part of BC you live in on your profile; is Kamloops the closest cancer centre to you, or can you get your bortezomib (Velcade) shots closer to home?
Ya, my father is in the same boat as you; he is about three months into his four month cycle of CyBorD (it's working) and questions whether a transplant is really worth the risk.
I noticed the part of BC you live in on your profile; is Kamloops the closest cancer centre to you, or can you get your bortezomib (Velcade) shots closer to home?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Pros and cons of delaying stem cell transplant
Hi Little Monkey! (love that username!)
No, for some yet unexplained reason, I have to travel, once a week, 3 hours one way from my home, or 2 hours one way from an apartment we've rented to make life a little easier for this process, to Kamloops hospital which is the closest Cancer Agency clinic to us, only to get a subcutaneous injection and have the nurse ask me a few questions, takes all of 5 - 10 minutes once they see me! Very frustrating, indeed. I do have a friend who works in the local hospital who is inquiring why a nurse here can't do it, or get the training. It might have to do with the drug itself, maybe it has to be freshly mixed? Could also be a funding thing, it might have to administered at the BC Cancer Agency in order for it to be covered? Just guessing now.
I can't complain too much really, this is one of the prices of living in a rural place. I have a team of friends who are lining up to drive me (the dex makes me too jumpy to drive, and the acyclovir causes dizziness), so we get in much needed visiting time, and it's a beautiful drive thankfully, AND it's not winter. And, being in Canada, there is funding for my travels, and the meds are mostly covered, as are all the doctor visits and procedures; feeling so fortunate to have been born and raised here.
How is your father's hematologist and oncologist dealing with his questioning the necessity of the transplant? I still am yet to be convinced that I have to do it, the docs seem to just be giving me the gold standard treatment without looking at me as an individual. The hematologist did say it was my choice (thank you!), but he recommends it. SO on the fence still!
No, for some yet unexplained reason, I have to travel, once a week, 3 hours one way from my home, or 2 hours one way from an apartment we've rented to make life a little easier for this process, to Kamloops hospital which is the closest Cancer Agency clinic to us, only to get a subcutaneous injection and have the nurse ask me a few questions, takes all of 5 - 10 minutes once they see me! Very frustrating, indeed. I do have a friend who works in the local hospital who is inquiring why a nurse here can't do it, or get the training. It might have to do with the drug itself, maybe it has to be freshly mixed? Could also be a funding thing, it might have to administered at the BC Cancer Agency in order for it to be covered? Just guessing now.
I can't complain too much really, this is one of the prices of living in a rural place. I have a team of friends who are lining up to drive me (the dex makes me too jumpy to drive, and the acyclovir causes dizziness), so we get in much needed visiting time, and it's a beautiful drive thankfully, AND it's not winter. And, being in Canada, there is funding for my travels, and the meds are mostly covered, as are all the doctor visits and procedures; feeling so fortunate to have been born and raised here.
How is your father's hematologist and oncologist dealing with his questioning the necessity of the transplant? I still am yet to be convinced that I have to do it, the docs seem to just be giving me the gold standard treatment without looking at me as an individual. The hematologist did say it was my choice (thank you!), but he recommends it. SO on the fence still!
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smithygilly - Name: Gillian
- Who do you know with myeloma?: me
- When were you/they diagnosed?: February 26, 2016
- Age at diagnosis: 46
Re: Pros and cons of delaying stem cell transplant
Hey Smithy,
My dad's haematologist isn't overly impressed about my dad saying no to the autologous stem cell transplant, but it is his choice.
Here in Ontario, they do inject Velcade outside of cancer centres in rural areas. However, I've never heard of Velcade being injected in a hospital that is smaller than the regional hospital (usually in a city over 30,000 pop). The patient still has to go to the cancer centre once a month or so though to meet with the haematologist.
My dad's haematologist isn't overly impressed about my dad saying no to the autologous stem cell transplant, but it is his choice.
Here in Ontario, they do inject Velcade outside of cancer centres in rural areas. However, I've never heard of Velcade being injected in a hospital that is smaller than the regional hospital (usually in a city over 30,000 pop). The patient still has to go to the cancer centre once a month or so though to meet with the haematologist.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Pros and cons of delaying stem cell transplant
Dear Jen,
I find myself in exactly the same place as you in my thinking process about multiple myeloma and me. I have no symptoms or discomfort except the side effects of chemo and mental anguish of suffering from myeloma. My only symptom is less than a multiple myeloma three lytic lesions on my spine, which was not detected through over fifty x-rays but it was through CT/PET scan.
My three hematologists (at three different locations as I travel frequently for business) had three opinions. Finally I made the decision of no transplant but had my stem cell collected and frozen for future use. One of the hematologist was more aggressive on transplant.
I find myself in exactly the same place as you in my thinking process about multiple myeloma and me. I have no symptoms or discomfort except the side effects of chemo and mental anguish of suffering from myeloma. My only symptom is less than a multiple myeloma three lytic lesions on my spine, which was not detected through over fifty x-rays but it was through CT/PET scan.
My three hematologists (at three different locations as I travel frequently for business) had three opinions. Finally I made the decision of no transplant but had my stem cell collected and frozen for future use. One of the hematologist was more aggressive on transplant.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Pros and cons of delaying stem cell transplant
Dear Jen:
I just finished reading a paper published by Vincent Rajkumar - a well accepted authority on multiple myeloma. I copy a paragraph related ASCT:
"Randomized trials show that survival is similar whether ASCT is done early (immediately after 4 cycles of induction therapy) or delayed (at the time of relapse as salvage therapy).79,80 Thus, the decision on timing of ASCT is based on patient and physician preference and the ability to cryopreserve stem cells. In a Spanish randomized trial,82 patients responding to induction therapy had similar overall and progression-free survival with either ASCT or 8 additional courses of chemotherapy, raising a question concerning the benefit of ASCT in patients responding to induction chemotherapy. The need for early ASCT in an era of new drugs is the most important clinical question in myeloma today."
Source:
RA Kyle and SV Rajkumar, "Multiple myeloma", ASH 50th Anniversary Review, Blood, March 2008 (full text, html; full text, PDF)
I hope this helps.
I just finished reading a paper published by Vincent Rajkumar - a well accepted authority on multiple myeloma. I copy a paragraph related ASCT:
"Randomized trials show that survival is similar whether ASCT is done early (immediately after 4 cycles of induction therapy) or delayed (at the time of relapse as salvage therapy).79,80 Thus, the decision on timing of ASCT is based on patient and physician preference and the ability to cryopreserve stem cells. In a Spanish randomized trial,82 patients responding to induction therapy had similar overall and progression-free survival with either ASCT or 8 additional courses of chemotherapy, raising a question concerning the benefit of ASCT in patients responding to induction chemotherapy. The need for early ASCT in an era of new drugs is the most important clinical question in myeloma today."
Source:
RA Kyle and SV Rajkumar, "Multiple myeloma", ASH 50th Anniversary Review, Blood, March 2008 (full text, html; full text, PDF)
I hope this helps.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Pros and cons of delaying stem cell transplant
Hello Jen:
I don't have much to add, but I just wanted to briefly answer back to your last post. Having to deal with this diagnosis is a hard pill to swallow, certainly initially, then I guess over time you get used to dealing with the issues. All of the thoughts and feelings you expressed I think are very normal, and have been expressed by many others on the forum.
Good luck with your decision, and I hope that there are no symptoms for a very very long time.
And good luck also to MMFeb, Smitty, and LM's dad. Regards
I don't have much to add, but I just wanted to briefly answer back to your last post. Having to deal with this diagnosis is a hard pill to swallow, certainly initially, then I guess over time you get used to dealing with the issues. All of the thoughts and feelings you expressed I think are very normal, and have been expressed by many others on the forum.
Good luck with your decision, and I hope that there are no symptoms for a very very long time.
And good luck also to MMFeb, Smitty, and LM's dad. Regards
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JPC - Name: JPC
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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