Hi everyone. This is my first post on this wonderful forum.
I'm a 41 yr old English chap, live in the UK, and was diagnosed with IgA kappa multiple myeloma in November of last year.
I am due to start my cyclopriming for my stem cell transplant (SCT) on the 7th April at the MacMillian Centre at UCLH in London. The team there are just fantastic.
My SCT pre clinic is this Wednesday, where I will get my full blood work and recent biopsy results. Based on these results - and trusting all will be looking good - I was thinking of postponing my SCT for 6 months. Primarily as I didn't have time to protect my chances of having any more children with my wife after the SCT. So the 6 months will give us time to do this.
But part of me is also wrestling with a question I'm sure many of you have asked: if I achieved remission from the 4 rounds of VTD indution therapy, do I 'really' need to put myself through the SCT? Can I not now make the necessary life-style, emotional, and dietary changes necessary to keep the disease stable and at bay?
Also, is sterility 100% guaranteed after high dose melphalan? Or is there any 'chance' of having children after?
I'd really appreciate some thoughts, experience or advice here.
Yours, with trepidation. Christian
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christianburne - Name: Christian Burne
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2013
- Age at diagnosis: 40
Re: Postponing my stem cell transplant - thoughts & advice?
Hi Christian,
Welcome to the forum. A lot of folks on this forum have decided to postpone an auto SCT and to instead approach it as a salvage therapy (or not consider one at all...ever). On the other hand, others have embraced doing an SCT up front...with some having good success and others experiencing failure. It's a very personal decision and every person's specific case of multiple myeloma is different.
Have you met with a multiple myeloma specialist that is NOT affiliated with a transplant center? You might be surprised at the different sort of philosophy you come away with from such a visit.
You might also find these articles and threads to be enlightening.
https://myelomabeacon.org/news/2013/08/16/stem-cell-transplant-timing-multiple-myeloma/
https://myelomabeacon.org/news/2012/04/10/two-myeloma-experts-debate-role-of-stem-cell-transplantation-in-the-treatment-of-multiple-myeloma/
And from the Mayo 2013 Guidelines:
...Greater emphasis on delayed ASCT. With improved induction therapies resulting in deeper responses, coupled with enhanced stem cell collection strategies, many patients are now opting to collect their stem cells but not immediately move on to ASCT. Recent evidence has supported this strategy, demonstrating the ongoing benefit of ASCT even when delayed.
(from http://www.mayoclinicproceedings.org/article/S0025-6196%2813%2900077-3/fulltext )
I always like to point folks to this thread as well.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Welcome to the forum. A lot of folks on this forum have decided to postpone an auto SCT and to instead approach it as a salvage therapy (or not consider one at all...ever). On the other hand, others have embraced doing an SCT up front...with some having good success and others experiencing failure. It's a very personal decision and every person's specific case of multiple myeloma is different.
Have you met with a multiple myeloma specialist that is NOT affiliated with a transplant center? You might be surprised at the different sort of philosophy you come away with from such a visit.
You might also find these articles and threads to be enlightening.
https://myelomabeacon.org/news/2013/08/16/stem-cell-transplant-timing-multiple-myeloma/
https://myelomabeacon.org/news/2012/04/10/two-myeloma-experts-debate-role-of-stem-cell-transplantation-in-the-treatment-of-multiple-myeloma/
And from the Mayo 2013 Guidelines:
...Greater emphasis on delayed ASCT. With improved induction therapies resulting in deeper responses, coupled with enhanced stem cell collection strategies, many patients are now opting to collect their stem cells but not immediately move on to ASCT. Recent evidence has supported this strategy, demonstrating the ongoing benefit of ASCT even when delayed.
(from http://www.mayoclinicproceedings.org/article/S0025-6196%2813%2900077-3/fulltext )
I always like to point folks to this thread as well.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Postponing my stem cell transplant - thoughts & advice?
Christian-
You don't give us any information about the treatment that you've had so far. If you've been taking Revlimid, you'll need to be off treatment for a while before you can save sperm for later use because of the increased possibility of birth defects from Revlimid. I don't know how Velcade might affect the sperm. I also don't know how they do preparation for stem cell harvesting in the UK. If Cytoxan is used, you don't want to have this before sperm banking because this is an alkylating agent like melphalan is and may affect fertility. Have you spoken with a cancer fertility specialist?
You have some big decisions to make quite quickly since April 7 is only a week away. It might be wise to delay things a little just so that you have time to gather the information that you want pertaining to fertility following stem cell harvest and stem cell transplant. In my case the whole stem cell transplant process from beginning to end wasn't horrible, but it wasn't tons of fun either. Most of us have been through it with relatively few problems.
So, take a deep breath and do what feels right for you and your situation. Since fertility is important to you, make sure that that is uppermost in your decision making. But, also make sure that you know what the effects of all of the drugs you are taking have on fertility and also on birth defects when you make your decision.
Nancy in Phila
You don't give us any information about the treatment that you've had so far. If you've been taking Revlimid, you'll need to be off treatment for a while before you can save sperm for later use because of the increased possibility of birth defects from Revlimid. I don't know how Velcade might affect the sperm. I also don't know how they do preparation for stem cell harvesting in the UK. If Cytoxan is used, you don't want to have this before sperm banking because this is an alkylating agent like melphalan is and may affect fertility. Have you spoken with a cancer fertility specialist?
You have some big decisions to make quite quickly since April 7 is only a week away. It might be wise to delay things a little just so that you have time to gather the information that you want pertaining to fertility following stem cell harvest and stem cell transplant. In my case the whole stem cell transplant process from beginning to end wasn't horrible, but it wasn't tons of fun either. Most of us have been through it with relatively few problems.
So, take a deep breath and do what feels right for you and your situation. Since fertility is important to you, make sure that that is uppermost in your decision making. But, also make sure that you know what the effects of all of the drugs you are taking have on fertility and also on birth defects when you make your decision.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Postponing my stem cell transplant - thoughts & advice?
Thanks so much to both of you for the reply, and information. Hugely helpful.
It's a huge decision, and yes I haven't given myself a great amount of time. My induction therapy inculded Velcade (no known fertility issues), dexamethasone and thalidomide. I've also had 2 rounds of Zomata (bisphosphonates).
Stem cell prep here is done with a low dose of Cytoxan, which is known to have fertility issues, but the risk is low on small doses.
Thanks again, I really appreciate the time you've taken to reply.
It's a huge decision, and yes I haven't given myself a great amount of time. My induction therapy inculded Velcade (no known fertility issues), dexamethasone and thalidomide. I've also had 2 rounds of Zomata (bisphosphonates).
Stem cell prep here is done with a low dose of Cytoxan, which is known to have fertility issues, but the risk is low on small doses.
Thanks again, I really appreciate the time you've taken to reply.
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christianburne - Name: Christian Burne
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2013
- Age at diagnosis: 40
Re: Postponing my stem cell transplant - thoughts & advice?
I went into remission after treatment and then did a stem cell transplant 6 months later. My remission lasted 3 1/2 years and, while I'm coming out of remission now, it has been gradual and manageable as far as not requiring immediate attention.
To address your question, I don't know what part the stem cell transplant had in my time in remission, but it couldn't have hurt, and I would do it again if I were your age.
I don't know about the sterility, but perhaps if there is chance, and it's important, you could look into having sperm frozen?
To address your question, I don't know what part the stem cell transplant had in my time in remission, but it couldn't have hurt, and I would do it again if I were your age.
I don't know about the sterility, but perhaps if there is chance, and it's important, you could look into having sperm frozen?
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Postponing my stem cell transplant - thoughts & advice?
Christian, as others have said, you have some important decisions to make. Good luck with the decisions and with your treatment, whatever you decide to do.
Thalidomide is well known to cause birth defects, so please talk with your myeloma specialist about how long you should be off of it before banking sperm, if you decide to go that route.
Thalidomide is well known to cause birth defects, so please talk with your myeloma specialist about how long you should be off of it before banking sperm, if you decide to go that route.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Postponing my stem cell transplant - thoughts & advice?
Hi Christian,
I'm a fellow Brit (chapess) aged 34 in London. I was diagnosed mid 2012 and also had just 4 cycles, of PAD (Velcade, doxorubicin, dex) in my case, also achieved stringent complete remission. I was on a trial where if you got CR or near CR you delayed transplant, so I did that - had harvest in Oct 2012, and then drug-free apart from bisphosphonates, back to normal life.
The appeal of 'maybe this is all I need' was certainly there and know what you're saying! In my case, I relapsed just over a year later. Obviously, I don't know the counterfactual of what would have happened after SCT. Avoiding infertility was a factor for me too, and I didn't have that problem from either the 4 cycles (though periods did halt for a while then) or from the cyclo-priming with cyclophosphamide for the harvest.
I'm now on VTD as of a month ago, and will do the SCT later this year. It has crossed my mind now that perhaps I could have frozen eggs in the last year while I was on remission - but I suppose I had so much else going on, it makes more sense to freeze fertilised eggs (and I didn't have a partner for most of that year) and I didn't of course know that I would relapse so soon.
I don't know how rapidly you got your response - mine was right down to zero after one cycle and I have read that is not so great in terms of prognosis, though there are so many different variables with better and worse prognostic median figures that it's hard to know which to pay more attention to. It feels like it went rapidly, but also grows back rapidly ... but not sure how well founded that is.
I am not at UCLH, though did go recently for a second opinion and it seems great. I know they have a fertility expert, Melanie someone? They offered to refer me to her. I also saw a similar doctor at my own (also excellent) hospital when first diagnosed. I know of women having given birth after SCT, and that fertility loss is not a given, but I have never asked about men. Then again, as you say, it is a known risk with the high-dose chemo, and I know of 20-something and 3-something women having premature menopause.
Only you can work out what is good for you - as with all side effects, you never know which ones you will have, but at least you don't want the regret of not having looked into it and made an informed decision would be my two pennies' worth ...
Good luck and best wishes for a long remission!
I'm a fellow Brit (chapess) aged 34 in London. I was diagnosed mid 2012 and also had just 4 cycles, of PAD (Velcade, doxorubicin, dex) in my case, also achieved stringent complete remission. I was on a trial where if you got CR or near CR you delayed transplant, so I did that - had harvest in Oct 2012, and then drug-free apart from bisphosphonates, back to normal life.
The appeal of 'maybe this is all I need' was certainly there and know what you're saying! In my case, I relapsed just over a year later. Obviously, I don't know the counterfactual of what would have happened after SCT. Avoiding infertility was a factor for me too, and I didn't have that problem from either the 4 cycles (though periods did halt for a while then) or from the cyclo-priming with cyclophosphamide for the harvest.
I'm now on VTD as of a month ago, and will do the SCT later this year. It has crossed my mind now that perhaps I could have frozen eggs in the last year while I was on remission - but I suppose I had so much else going on, it makes more sense to freeze fertilised eggs (and I didn't have a partner for most of that year) and I didn't of course know that I would relapse so soon.
I don't know how rapidly you got your response - mine was right down to zero after one cycle and I have read that is not so great in terms of prognosis, though there are so many different variables with better and worse prognostic median figures that it's hard to know which to pay more attention to. It feels like it went rapidly, but also grows back rapidly ... but not sure how well founded that is.
I am not at UCLH, though did go recently for a second opinion and it seems great. I know they have a fertility expert, Melanie someone? They offered to refer me to her. I also saw a similar doctor at my own (also excellent) hospital when first diagnosed. I know of women having given birth after SCT, and that fertility loss is not a given, but I have never asked about men. Then again, as you say, it is a known risk with the high-dose chemo, and I know of 20-something and 3-something women having premature menopause.
Only you can work out what is good for you - as with all side effects, you never know which ones you will have, but at least you don't want the regret of not having looked into it and made an informed decision would be my two pennies' worth ...
Good luck and best wishes for a long remission!
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Helga - Name: Helga
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May/June 2012
- Age at diagnosis: 32
Re: Postponing my stem cell transplant - thoughts & advice?
Thanks again everyone, so much for your time to respond.
The good news; during my last clinic (Wednesday), I got the all clear on everything but my P count which has been stable at 4 since January, down from 81 at time of diagnosis. Followed by some even better news this morning that I can bank some sperm on Monday. They rushed me into do a sample on Wednesday and the fertility team believing its safe to bank, with no damage from the rounds of VTD. Amazing how quickly things can turn out ok....
So we move on as planned, with cyclopriming on Monday.
Wishing all the best in your own journeys.
Christian
The good news; during my last clinic (Wednesday), I got the all clear on everything but my P count which has been stable at 4 since January, down from 81 at time of diagnosis. Followed by some even better news this morning that I can bank some sperm on Monday. They rushed me into do a sample on Wednesday and the fertility team believing its safe to bank, with no damage from the rounds of VTD. Amazing how quickly things can turn out ok....
So we move on as planned, with cyclopriming on Monday.
Wishing all the best in your own journeys.
Christian
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christianburne - Name: Christian Burne
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2013
- Age at diagnosis: 40
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