My husband and I will be going to see the Oncologist in our capital city (Hobart) on July the 11th to discuss SCT.
At our first visit with our haematologist at our cancer centre, he suggested we do some research and to think about whether or not my husband have a SCT or hold off on it as it is no longer the only course of action. He said my husband should however go onto frontline treatment and harvest enough cells for at least 2 future transplants.
He has on future visits seemed more leaning toward the SCT and hasn't discussed the possibilities of waiting to see if there is a relapse. I suspect that the doctors in our cancer treatment hospital have had very limited experience with Myeloma treatment.
What should we be asking? How do you know that you are making the right choice?
We have a "free" public hospital system here in Australia - most of the drugs/treatments are covered by Medicare (our public health system) This limits some of our choices as we don't have private cover.
My husband is on vel/dex/zometa treatment until his harvest. He has had a good response so far and his levels have been back to normal already.
Any suggestions would be appreciated...
Forums
9 posts
• Page 1 of 1
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
Re: Questions to ask about SCT - suggestions?
HI Ulrika, I think that it is quite standard to harvest stem cells when you can, even if you don't have an auto SCT planned in the near future.
I went thru a similar sort of induction, stem cell harvest and auto SCT more than three years ago , as well as taking a year of low dose revilimid treatment after that, and it worked well for me. I am still in remission, not on chemo drugs.
But everyone's case is so unique, and I think you just have to keep reading and hopefully discussing your options with your doctors to decide what might work best for you. From reading on this site, I think that there are myeloma specialists in Melbourne.
Did he have the chromosomal testing done? This would let you know if you have genetic factors that could influence treatment also.
I went thru a similar sort of induction, stem cell harvest and auto SCT more than three years ago , as well as taking a year of low dose revilimid treatment after that, and it worked well for me. I am still in remission, not on chemo drugs.
But everyone's case is so unique, and I think you just have to keep reading and hopefully discussing your options with your doctors to decide what might work best for you. From reading on this site, I think that there are myeloma specialists in Melbourne.
Did he have the chromosomal testing done? This would let you know if you have genetic factors that could influence treatment also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Questions to ask about SCT - suggestions?
Hi, My transplant Doctor explained to me in 2009 to do the Auto Stem Cell Transplant first because recovery and medications are so much easier. I have stem cells frozen to do another transplant when needed. He told me at a later date when needed then do a bone marrow transplant, which means lots of medications afterwards. I listened to him and have been in remission 3 years this last May. I am 62 now and feel practically normal. Steve
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texas-tea13 - Name: Steve
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 09/19/2009
- Age at diagnosis: 59
Re: Questions to ask about SCT - suggestions?
I haven't got copies of my husbands chromosomal results and last time we saw our doctor he said they weren't quite complete but he could tell us that my husband is not high risk, that all seems to be in his favour so far. The other thing was we were told that my husbands blood levels were "borderline" to being MGUS but because of the bone lesions they recommended we start treatment. All of this to me suggests we would benefit from not jumping into SCT if he were to go into a period of being stable again now that his multiple myeloma levels are down and back to normal. I just want to be sure that we know to ask the right questions and not be pushed into something we might regret later. I already wonder if starting treatment now was necessary... I guess the fact he did have 2 fractures and pain in the ribs needed to be treated but wonder if just the Zometa would have fixed that?? Not sure.
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
Re: Questions to ask about SCT - suggestions?
Hi Ulrika, Zometa is a bishphosphonate, which will help build up new bone, favoring the osteoblasts over the osteoclasts. The myeloma upsets the balance of the bone building and leads to bone destruction...our bones are not static, but always in a state of cells being replaced. tHE chemotherapy is needed to destroy the mutant plasma cells that are encouraging bone destruction. The Zometa alone wouldn't be effective enough to do that.
It's great that your husband has caught this disease early and has gotten back to normal blood results. You both must be very relieved about that. You can take it from here with your doctors and try to determine the best course of treatment!
It's great that your husband has caught this disease early and has gotten back to normal blood results. You both must be very relieved about that. You can take it from here with your doctors and try to determine the best course of treatment!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Questions to ask about SCT - suggestions?
Thanks Nancy - we are and should be grateful for the good results... I guess I am pretty paranoid about treatment in general - my experiences with people I know who have had cancer in the past have been rather traumatic.. I just need to have hope that we might still enjoy many years ahead together... 45 is too young to be battling this - I know we are not that badly off as others who are much younger! but it still feels like a huge blow to our hopes of growing old together and doing some travel after many years of bringing up our children.... here's to hoping for a good long term response to treatment! We booked our accommodation today for our visit to the hospital (at our closest capital city) it's our wedding anniversary in a few weeks too... so we will be celebrating that as well as finding out about SCT!! 21 years this year 
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
Re: Questions to ask about SCT - suggestions?
Hi Ulrika, I hope that your app'ts go really well for you. I think you are smart to come to the Beacon for help also. If you post any questions on the Forum, there will be some people who are able to talk about that with you. There are other younger patients who contribute here also...
Myeloma has become an issue of 'life long learning' for me and I suspect it will be for you two also!
Myeloma has become an issue of 'life long learning' for me and I suspect it will be for you two also!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Questions to ask about SCT - suggestions?
Dear Ulrika,
You need to seek an opinion from an expert specialist in Multiple Myeloma. This would not be a regular hemotologist/oncologist. It may need to be outside of your covered medical care. It might even mean you would have to travel outside of your country. You also would only want to have a stem cell transplant at a hospital experienced with Multiple Myeloma. As you mentioned...your cancer center might have limited experience with multiple myeloma, I'm concerned. If your chromosomal results are not in, how would your Oncologist know that he is not at high risk? This is how this is determined. Also he would not be MGUS if there are bone lesions. So this is incorrect. If you have low M protein numbers or no M protein with bone lesions...this doesn't mean that the multiple myeloma is Mgus or borderline. It may mean that it is non-secretory multiple myeloma or that it is light chain multiple myeloma, that doesn't show on the routine blood assay test. Please insure that hes had a test for light chain multiple myeloma, called the Freelite Assay. See this link: http://myeloma.org/pdfs/Freelite_tipcard_2011_c1web.pdf
Also be sure that he's had a PetScan. This will show the true level of active bone destruction.
I'm speaking from experience! My husbands doctor who was a very good hemo/onc thought they would just monitor situation and didn't run the Freelite or the PetScan, because the regular assay didn't show M Protein and his biopsy was always negative. Yet the multiple myeloma was progressing, until he was stage III and these test were finally ran. Dr. was just not up on the current tests and didn't listen to our research that he needed these tests. It turns out this was the only way to follow his type multiple myeloma.
He had a stem cell transplant 6 months ago at age 61. Our decision to go ahead, was to do the transplant while younger & stronger rather than wait it out. He had the same treatment as your husband prior to transplants...Velcade, Dexamethazone, Zomeda, but also with Revlimid. You might see if Revlimid aka Lenalidomide is available to you. It is standard here. USA
Stay informed & advocate for the care you husband deserves! Make sure the doctors are up to date on the most recent developments. Use a consult with an expert in Multiple Myeloma to guide & work with your doctors, even if you need to go out of pocket for the expense. This is a great website & resource that you found this forum. Also look at http://myeloma.org Here you can listen to past teleconferences and webcasts for great information.
I absolutely hear you about your disappointment of the change in your future together. I couldn't have said it better than you. We were also ready to enjoy the carefree retirement we worked so hard for...ie travel, fun etc. Now its about staying healthy and making the right choices in his care. Learning to change our focus from the future to living each day. Starting to plan some trips now that he is 90% recovered from transplant.
Prayers to you....
You need to seek an opinion from an expert specialist in Multiple Myeloma. This would not be a regular hemotologist/oncologist. It may need to be outside of your covered medical care. It might even mean you would have to travel outside of your country. You also would only want to have a stem cell transplant at a hospital experienced with Multiple Myeloma. As you mentioned...your cancer center might have limited experience with multiple myeloma, I'm concerned. If your chromosomal results are not in, how would your Oncologist know that he is not at high risk? This is how this is determined. Also he would not be MGUS if there are bone lesions. So this is incorrect. If you have low M protein numbers or no M protein with bone lesions...this doesn't mean that the multiple myeloma is Mgus or borderline. It may mean that it is non-secretory multiple myeloma or that it is light chain multiple myeloma, that doesn't show on the routine blood assay test. Please insure that hes had a test for light chain multiple myeloma, called the Freelite Assay. See this link: http://myeloma.org/pdfs/Freelite_tipcard_2011_c1web.pdf
Also be sure that he's had a PetScan. This will show the true level of active bone destruction.
I'm speaking from experience! My husbands doctor who was a very good hemo/onc thought they would just monitor situation and didn't run the Freelite or the PetScan, because the regular assay didn't show M Protein and his biopsy was always negative. Yet the multiple myeloma was progressing, until he was stage III and these test were finally ran. Dr. was just not up on the current tests and didn't listen to our research that he needed these tests. It turns out this was the only way to follow his type multiple myeloma.
He had a stem cell transplant 6 months ago at age 61. Our decision to go ahead, was to do the transplant while younger & stronger rather than wait it out. He had the same treatment as your husband prior to transplants...Velcade, Dexamethazone, Zomeda, but also with Revlimid. You might see if Revlimid aka Lenalidomide is available to you. It is standard here. USA
Stay informed & advocate for the care you husband deserves! Make sure the doctors are up to date on the most recent developments. Use a consult with an expert in Multiple Myeloma to guide & work with your doctors, even if you need to go out of pocket for the expense. This is a great website & resource that you found this forum. Also look at http://myeloma.org Here you can listen to past teleconferences and webcasts for great information.
I absolutely hear you about your disappointment of the change in your future together. I couldn't have said it better than you. We were also ready to enjoy the carefree retirement we worked so hard for...ie travel, fun etc. Now its about staying healthy and making the right choices in his care. Learning to change our focus from the future to living each day. Starting to plan some trips now that he is 90% recovered from transplant.
Prayers to you....
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CMC
Re: Questions to ask about SCT - suggestions?
Thank you for all of those suggestions and advice - I don't understand what our haematologist is telling us at visits most of the time and my husband and I just don't seem to know WHAT to ask and what it all means. It just all seems like a lottery in some ways anyway so what ever we choose may not be right because it is a very individual disease. We have been assured the hospital we are visiting is up to speed with Myeloma treatments - we are not in a position financially anyway to make our own choices regarding who we see. I will get the specialists in Hobart to fully explain what all the blood test results mean so that I understand it. I don't think the doctor said that my husband is MGUS anymore but he suggested that he may have been borderline for some time and only just moved into an active stage because of the bone lesions. His first couple of blood tests were:
Monoclonal IgG Kappa :
IG 33.1
Kappa FLC 1010.0
Then he had another blood test prior to starting the treatment and the levels were:
IG 16.4
Kappa FLC 27.0
He was surprised by the drop even without treatment and it has continued to drop normal levels on treatment.
The bone marrow test results when we last visited were not complete (missing some of the chromosomal testing) but the doctor called the pathology dept. and they read out the results at that point on the phone, and said that he didn't have the really "bad" signs of high risk so either intermediate or low risk. Unfortunately our doctor is on a months leave now so we haven't go another appointment until we go to the Hobart Hospital. I will have to make sure the nurses at the cancer clinic give us copies of the test results to take with us.
I have just found out about a cancer support group in my area which I will join in on a free 8 week course for newly diagnosed patients and carers advice... hopefully that will help us be able to navigate this new world better... I haven't felt confident to ask for results and copies of blood tests etc. I need to be more assertive.
Monoclonal IgG Kappa :
IG 33.1
Kappa FLC 1010.0
Then he had another blood test prior to starting the treatment and the levels were:
IG 16.4
Kappa FLC 27.0
He was surprised by the drop even without treatment and it has continued to drop normal levels on treatment.
The bone marrow test results when we last visited were not complete (missing some of the chromosomal testing) but the doctor called the pathology dept. and they read out the results at that point on the phone, and said that he didn't have the really "bad" signs of high risk so either intermediate or low risk. Unfortunately our doctor is on a months leave now so we haven't go another appointment until we go to the Hobart Hospital. I will have to make sure the nurses at the cancer clinic give us copies of the test results to take with us.
I have just found out about a cancer support group in my area which I will join in on a free 8 week course for newly diagnosed patients and carers advice... hopefully that will help us be able to navigate this new world better... I haven't felt confident to ask for results and copies of blood tests etc. I need to be more assertive.
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
9 posts
• Page 1 of 1