Hello everybody,
I'm a new reader of The Myeloma Beacon. I was diagnosed with myeloma in January 2015. It was a shock message from my doctor. I have no medical history and am not taking any medicine except cod liver oil.
It started with pain at the back of my neck. I thought it was from stress or tiredness after working nights. The pain was getting worse, I could not turn nor bend my head up and down. I still reported to work with a stiff neck. I tried pain killers with no help. My colleagues were talking about "lock of the neck" and advised me to go to the doctor and get x-rayed or go to a chiropractor. So I did.
My doctor ordered X- rays and a CT scan, and took blood samples. He called after he got the blood test results, and told me I have myeloma and referred me to a hematologist. So that's it, my mind went upside down.
The hematologist explained myeloma, the treatment, and the stem cell transplant plan. February 2, I started Velcade, cyclophosphamide, and dexamethasone (VCD) plus acyclovir. The plan was to harvest the stem cells mid-May. They can not do the stem cell transplant because I don't have enough stem cells to harvest (tried twice even with stimulating medicine).
July 20, I am on Velcade, melphalan, and prednisolone (VMP) cycle.. I haven't received Velcade for a while now because of my low platelet count (waiting for the numbers to go up).
Is there anyone with case as mine, age under 60 years old, who hasn't done the stem cell transplant? What treatment are you getting and what's the plan?
I'm also interested to hear from Scandinavian people. Thank you and good luck everyone.
Forums
8 posts
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Re: Treatment without a stem cell transplant
Hello,
Yes, there are not so few who choose not to get an autologous stem cell transplant, and I guess that there is a chance that you will hear from some of them here.
Also, and that could be just as interesting for you, the specialists and researchers are now discussing if autologous stem cell transplant (ASCT) is really the way forward for the younger patients, or if the combinations with novel treatments can already now or maybe in a few years yield better results than the transplant.
But this leads to the question that you will see in nearly all new posts: Where are you living and are your treatment being planned by a myeloma specialist and not just by a hematologist reading the standard plan?
No offense intended.
And your numbers, the indicators for your multiple myeloma condition (M-component, kappa/lambda free light chains and other blood counts), how are they changing over time?
Greetings and best wishes,
Lev
Yes, there are not so few who choose not to get an autologous stem cell transplant, and I guess that there is a chance that you will hear from some of them here.
Also, and that could be just as interesting for you, the specialists and researchers are now discussing if autologous stem cell transplant (ASCT) is really the way forward for the younger patients, or if the combinations with novel treatments can already now or maybe in a few years yield better results than the transplant.
But this leads to the question that you will see in nearly all new posts: Where are you living and are your treatment being planned by a myeloma specialist and not just by a hematologist reading the standard plan?
No offense intended.
And your numbers, the indicators for your multiple myeloma condition (M-component, kappa/lambda free light chains and other blood counts), how are they changing over time?
Greetings and best wishes,
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Treatment without a stem cell transplant
This is a very common question on this forum, although the question doesn't usually come up in a situation when there aren't enough stem cells to do the transplant in the first place. Here is one of the more recent threads that points to a lot of other threads on the subject. I'd suggest you take the time to read through all the linked threads, in addition to what Cheryl suggests.
https://myelomabeacon.org/forum/stem-cell-transplant-is-it-necessary-t5173.html
Even though they fully qualify for an auto transplant, there are a fair number of folks on this forum that have chosen not to proceed with an early auto transplant (and instead consider it a potential future salvage therapy) and some that have chosen to never consider an auto transplant.
https://myelomabeacon.org/forum/stem-cell-transplant-is-it-necessary-t5173.html
Even though they fully qualify for an auto transplant, there are a fair number of folks on this forum that have chosen not to proceed with an early auto transplant (and instead consider it a potential future salvage therapy) and some that have chosen to never consider an auto transplant.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Treatment without a stem cell transplant
Hi, I m one of those who opted for the non-transplant protocol. What works for one will probably work differently for another so I would not advise either way. My reason for refusing a transplant was due to the invasive nature of the treatment, I responded very well to the normal regimen of Revlimid, Velcade and dexamethasone.
I was diagnosed in January 2012 at the age of 58 although previous blood tests showed I had a serious level of illness throughout 2011 and probably going back to 2008, when I was being taken into hospital for obscure symptoms. My first suspicious blood and urine tests were in 2003, revealing proteins requiring further investigation.
So, I had 6 months treatment with Revlimid, Velcade, and dex, from January 2012, I attained a full remission which has lasted to the present time, approximately 42 months. Following the initial 6 months on full treatment, I had one year ''maintenance" therapy, 10 mg daily Revlimid and Zometa every 3 months ever since.
I had an enlarged thyroid with nodules which was removed this year and confirmed as benign.
I believe transplants are still a key part of the myeloma treatment arsenal, but this will probably change in the coming years. I hope all goes well whichever treatment you choose.
I was diagnosed in January 2012 at the age of 58 although previous blood tests showed I had a serious level of illness throughout 2011 and probably going back to 2008, when I was being taken into hospital for obscure symptoms. My first suspicious blood and urine tests were in 2003, revealing proteins requiring further investigation.
So, I had 6 months treatment with Revlimid, Velcade, and dex, from January 2012, I attained a full remission which has lasted to the present time, approximately 42 months. Following the initial 6 months on full treatment, I had one year ''maintenance" therapy, 10 mg daily Revlimid and Zometa every 3 months ever since.
I had an enlarged thyroid with nodules which was removed this year and confirmed as benign.
I believe transplants are still a key part of the myeloma treatment arsenal, but this will probably change in the coming years. I hope all goes well whichever treatment you choose.
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Ian Forsyth
Re: Treatment without a stem cell transplant
Ian Forsyth,
The reason whyIi haven't done a ASCT it's because not enough cells to harvest. I did received medicine to stimulate the bone marrow, but to no good result. That's why the doctor put me on
VMP.
I thought Zometa is given once a week? That's what I understand. I don't receive Zometa
because I got a terrible complication after the first dose.
Yes, I hope all goes well whatever treatment they're receiving.
The reason whyIi haven't done a ASCT it's because not enough cells to harvest. I did received medicine to stimulate the bone marrow, but to no good result. That's why the doctor put me on
VMP.
I thought Zometa is given once a week? That's what I understand. I don't receive Zometa
because I got a terrible complication after the first dose.
Yes, I hope all goes well whatever treatment they're receiving.
Re: Treatment without a stem cell transplant
I can't speak to the transplant / no transplant issue since I fortunately was able to harvest enough stem cells for 2 transplants and have had one. I also don't know what the healthcare regulations are in Scandinavia, which country, to comment on your treatment regimen.
But, here in the U.S. there are all kinds of dosing schedules for Zometa and lengths of time for infusing it. I received Zometa once a month for 8 months prior to my stem cell transplant and since then every 6 weeks. It is infused along with a saline solution over a 15-minute time period with no problems for me.
There are people on the forum who have it infused over longer periods of time, 30 minutes to 60 minutes, to cut down on the side effects that they experienced during the first infusion.
There are people who receive it once a month, every 6 weeks like me, or every 3, 6, or 12 months.
Most people seem to receive it only for 2 years. I continue to receive it because of multiple bone lesions throughout my body and because I have had pathologic fractures and symptomatic lesions develop during the 2 periods that the infusions were stopped for other medical reasons for short periods of time.
If you give us more information about your treatment regimens, lab results with units of measure, which country you reside in, and a little information about what the healthcare regulations are in your country about cancer care, people on the forum may be able to better answer some of your questions.
All the best,
Nancy in Phila
Philadelphia has just been designated as a World Heritage City, the first in the US.
But, here in the U.S. there are all kinds of dosing schedules for Zometa and lengths of time for infusing it. I received Zometa once a month for 8 months prior to my stem cell transplant and since then every 6 weeks. It is infused along with a saline solution over a 15-minute time period with no problems for me.
There are people on the forum who have it infused over longer periods of time, 30 minutes to 60 minutes, to cut down on the side effects that they experienced during the first infusion.
There are people who receive it once a month, every 6 weeks like me, or every 3, 6, or 12 months.
Most people seem to receive it only for 2 years. I continue to receive it because of multiple bone lesions throughout my body and because I have had pathologic fractures and symptomatic lesions develop during the 2 periods that the infusions were stopped for other medical reasons for short periods of time.
If you give us more information about your treatment regimens, lab results with units of measure, which country you reside in, and a little information about what the healthcare regulations are in your country about cancer care, people on the forum may be able to better answer some of your questions.
All the best,
Nancy in Phila
Philadelphia has just been designated as a World Heritage City, the first in the US.
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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: Treatment without a stem cell transplant
skobergsommer123 wrote:
I have personally never heard of Zometa being given on a weekly basis. Originally I had it every two months and this was then reduced to every 3 months. The treatment is beneficial if it does not produce serious side effects, one of the most serious is connected with the jaw bone, although it is quite rare.
I understand about your problem with the stem cell harvest and I wanted to try and reassure you that if you have no choice but to go without a transplant, please do not despair. You can expect a good result from the Revlimid, etc, keeping in mind that many new drugs and treatments are arriving. May I just add that I have a friend in Canada who has been on Revlimid continuously for the past eight years, he has never experienced a full remission but he is still in excellent condition and feels "good for another ten years"! He was diagnosed around the age of 50.
Kind Regards from Ian in France.
I thought Zometa is given once a week? That's what I understand. I don't receive Zometa because I got a terrible complication after the first dose.
I have personally never heard of Zometa being given on a weekly basis. Originally I had it every two months and this was then reduced to every 3 months. The treatment is beneficial if it does not produce serious side effects, one of the most serious is connected with the jaw bone, although it is quite rare.
I understand about your problem with the stem cell harvest and I wanted to try and reassure you that if you have no choice but to go without a transplant, please do not despair. You can expect a good result from the Revlimid, etc, keeping in mind that many new drugs and treatments are arriving. May I just add that I have a friend in Canada who has been on Revlimid continuously for the past eight years, he has never experienced a full remission but he is still in excellent condition and feels "good for another ten years"! He was diagnosed around the age of 50.
Kind Regards from Ian in France.
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Ian Forsyth
Re: Treatment without a stem cell transplant
Just about Zometa ... getting it every 4 weekend over 25-40 minutes. The nurse and doctor say not to expect side effects. Not that they never occur, but just that I should not worry.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
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