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Sharon
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| Joined: | Thu Sep 17th, 2009 |
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Posted: Fri Sep 18th, 2009 02:47 pm |
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I am 44 and was told back in May I had Lupus. I have had very odd systoms since last Sept 08 and seems to have progressed quite quickly. I had a bone marrow biopsy and they say 80% of my cells are effected and now I have Multiple Myeloma. I am starting Revlimid today, awaiting the FedEx driver now. I have been very enemic , hospitalized a few weeks ago and got two units of blood last Friday which seemed to help. My hands are numb, my legs dont work so well and my hips dont seem to get me up the steps anymore. Kidney issues were cropping up as well. Just looking for information and guidance and following the doctors orders but its very scary and they say this doesnt usually happen to someone my age and gender...just my luck ! Any advise or comments appreciated, just gathering info and hoping for the best.
Thank you,
Sharon
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Chat Moderator
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Posted: Fri Sep 18th, 2009 08:41 pm |
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Hi Sharon,
You are indeed younger than the typical myeloma patient and, especially since you are so young, we'd recommend taking a more aggressive approach to treatment on the front end. This is the key to long periods of remission, a longer life, and a better quality of life for multiple myeloma patients.
If you hit the myeloma cells hard at the beginning when they have not yet been exposed to treatment before, you will catch them off guard. Whereas, if you take the approach of starting off with less aggressive treatment (like just taking Revlimid) and only moving to more aggressive treatment if you relapse, the myeloma cells have in the meantime grown smarter. The myeloma cells sense that you are trying to get rid of them, and they have time to grow resistant to treatment. Treatment will therefore ultimately be less effective.
Also, if you get effective treatment, many of the bad symptoms you're experiencing with the myeloma will improve.
So, from our point of view, we'd recommend taking the myeloma head on with something like tandem transplants with high dose chemotherapy and thereafter a good maintenance program to keep the myeloma from coming back. In our opinion, there's a good chance that Revlimid alone will not suffice or that it will work for a while but a much shorter period of time than if you would have had more aggressive treatment to start with.
Also, the reason we recommend having two transplants rather than just one is that many patients still have residual myeloma cells remaining at the biochemical level after their first transplant. This means that there are still myeloma cells but they are at too low of a level to detect during testing. The second transplant plus the maintenance therapy are intended to eradicate those myeloma cells that were not eliminated during the first transplant. It is a preemptive approach.
I hope this helps. There are several approaches to treating myeloma, and this is ours. We have seen excellent results in our patients, and our studies show that the median survival rate with our tandem transplant protocol is 10+ years and that 80% of newly-diagnosed patients achieve a complete remission with this treatment.
If you have any more questions, don't hesitate to ask.
Take care,
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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Sharon
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Posted: Sat Sep 19th, 2009 02:20 pm |
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| Do you suggest I ask my doctor to proceed with more agressive treatment or should I be in contact with some kind of program to get further help? Just not sure what to do at this point other than what they are currently telling me. I go back next week so not sure what the next step will be or where to go from here.
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Christina
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Posted: Sat Sep 19th, 2009 08:26 pm |
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| I was diagnosed last year with MM when I was 44 also. Velcade did wonders for me. I'm doing well now. Wish you all the best.
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Chat Moderator
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Posted: Mon Sep 21st, 2009 07:58 pm |
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I think it all depends on whether or not your doctor believes in more aggressive treatment like tandem transplants and whether or not this is the route you want to go.
I think there are three important points to make:
(1) Find a doctor whose treatment philosophy you agree with and feel is best for you.
(2) Seek treatment from a myeloma specialist. Someone who has been dedicating their life and career to myeloma and has seen thousands of cases.
(3) Get data from the doctor. Ask the doctor how many myeloma patients he/she has treated with the treatment they are prescribing for you and how many are still alive after 3, 5, or 10 years. You want a doctor who has done research on that treatment method. Ask to see research studies and their outcomes.
As I said in the previous posting, studies on tandem transplants are now showing a median survival rate of 10+ years and 80% of newly-diagnosed patients are achieving complete remission.
The median survival of 10 years is based on the myeloma research studies known as Total Therapy that started in Arkansas on a protocol involving tandem transplants and maintenance therapy.
The first study on tandem transplants (called Total Therapy I) started in 1990 and accrued patients until 1994. The median survival of patients on the study turned out to be seven years.
The second study (called Total Therapy II) started in 1998. These patients continue to be tracked, but it can already be scientifically stated based on the data that the average myeloma patient who gets this treatment protocol will survive about 10 years, if not more.
There’s now a Total Therapy III and the median survival rate is expected to be even better, but conclusions can't yet be drawn.
We continue to slightly alter the treatment started in Total Therapy I & II and seem to be getting results that prove the treatment is extending survival and these “tweaks” are working well.
I wish you all the best with your treatment, and if you'd like to see a myeloma specialist at Huntsman Cancer Institute to get a treatment recommendation, just let me know and we'll be happy to arrange that for you.
Keep us posted on how you're doing.
Chat Moderator
Huntsman Cancer Institute
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