Hello,
I’m 42 years old, I was diagnosed with MGUS in August 2006 in regular blood tests. I was complaining of extreme fatigue (after the MGUS diagnosis, the deletion of chromosome 13 was detected by FISH) and I progressed to myeloma (IgG Lambda) in October 2011 (IgG 2290 and 19% plasmocyts). No symptoms apart from anemia and fatigue (which are still present to this day).
I had 3 months of chemo (several cycles), 3 infusions with Aredia and then an ASCT in April 2012.
I have been without any kind of treatment since my ASCT (almost 3 years). Since I’m in Portugal, this is the treatment protocol here (or so I was told).
I also have developed a deficiency of vitamin D, I have to take a supplement and control the levels, otherwise it decreases to nearly zero.
I’m not sure if I am in partial remission or not. After my ASCT my numbers were not so good for about 2 years, but now my levels have been steady (still no treatment).
I also haven't had any kind of further exams apart from routine blood tests; no PET scans, no MRI or bone marrow biopsy.
Since I have (or had?) a deletion of chromosome 13, should I pursue more thorough testing and exams or even insist on maintenance therapy? Are we being careless? Are we pretending nothing is wrong and then it will be too late?
Thank you and bless you all.
Alexandra.
Forums
5 posts
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Alexandra Almeida - Name: Alexandra
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: october 2011
- Age at diagnosis: 38
Re: Prognosis after ASCT without any further treatment
It is difficult, for any of us in the U.S., to answer your questions not knowing what is considered normal medical procedure with respect to multiple myeloma ASCT follow-up in Portugal.
Therefore, I will limit my response as to what I would request as a patient in the U.S.
I would want periodic blood work done. Periodic would be at least once every 3 months, and more often, if the myeloma has become active. The blood work would include SPEP, IFE, sFLC as well as a CBC and chemistry panel. I would also like to see a full immunoglobulin measurement (IgA, IgG and IgM.)
The results of these tests will dictate whether treatment should be re-started. A BMB is not something that I would have run initially, unless the blood tests point to increased activity. The same is true with skeletal x-rays or CT/MRI.
I would also seek out a myeloma specialist as opposed to relying upon a local oncologist.
Therefore, I will limit my response as to what I would request as a patient in the U.S.
I would want periodic blood work done. Periodic would be at least once every 3 months, and more often, if the myeloma has become active. The blood work would include SPEP, IFE, sFLC as well as a CBC and chemistry panel. I would also like to see a full immunoglobulin measurement (IgA, IgG and IgM.)
The results of these tests will dictate whether treatment should be re-started. A BMB is not something that I would have run initially, unless the blood tests point to increased activity. The same is true with skeletal x-rays or CT/MRI.
I would also seek out a myeloma specialist as opposed to relying upon a local oncologist.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Prognosis after ASCT without any further treatment
Hi Alexandra,
Thanks for writing to the Beacon and sharing your treatment history thus far. This Forum is international, due to the nature of the Internet, and a good way of comparing between countries also!
I think that at least you should be getting a skeletal X-ray survey once a year to check if there is bone damage detectable that way. I see that you had three treatments of Aredia, whereas probably you could have had those treatments for 2-3 years. X-rays are not as good as other scans to detect thinning of the bones, but they are 'standard of care' at least.
I agree with Ron that you should seek out a myeloma specialist to consult with.
I do not know what myeloma treatments are funded in Portugal. In the EU as a whole, there are many myeloma drugs now approved (Revlimid, Pomalyst, and perhaps Carfilzomib). I think I would make a study into just what drugs and treatments have been approved by the EU drug authority (not sure if that is the right name) and then see which ones are funded for use in Portugal. Even the forms of treatment need to be approved. For example, 'maintenance therapy' may or may not be funded. Also, groups of drugs, such as doublets, triplets may or may not be funded! (eg. Revlimid plus dex is a 'doublet', whereas 'Revlimid plus Velcade plus dex' would be a 'triplet'.)
What is approved and funded in an area with universal health care, which I presume you have in Portugal(?), has a bearing on how you will be treated there. You possibly would have to wait for a 'relapse' to get more treatments, but a good myeloma specialist will know when and with what to treat your myeloma, if that is necessary.
If you wanted to post your recent lab results, others could determine whether or not you are in partial remission, I think.
Good luck, and remember that knowledge is power!
Thanks for writing to the Beacon and sharing your treatment history thus far. This Forum is international, due to the nature of the Internet, and a good way of comparing between countries also!
I think that at least you should be getting a skeletal X-ray survey once a year to check if there is bone damage detectable that way. I see that you had three treatments of Aredia, whereas probably you could have had those treatments for 2-3 years. X-rays are not as good as other scans to detect thinning of the bones, but they are 'standard of care' at least.
I agree with Ron that you should seek out a myeloma specialist to consult with.
I do not know what myeloma treatments are funded in Portugal. In the EU as a whole, there are many myeloma drugs now approved (Revlimid, Pomalyst, and perhaps Carfilzomib). I think I would make a study into just what drugs and treatments have been approved by the EU drug authority (not sure if that is the right name) and then see which ones are funded for use in Portugal. Even the forms of treatment need to be approved. For example, 'maintenance therapy' may or may not be funded. Also, groups of drugs, such as doublets, triplets may or may not be funded! (eg. Revlimid plus dex is a 'doublet', whereas 'Revlimid plus Velcade plus dex' would be a 'triplet'.)
What is approved and funded in an area with universal health care, which I presume you have in Portugal(?), has a bearing on how you will be treated there. You possibly would have to wait for a 'relapse' to get more treatments, but a good myeloma specialist will know when and with what to treat your myeloma, if that is necessary.
If you wanted to post your recent lab results, others could determine whether or not you are in partial remission, I think.
Good luck, and remember that knowledge is power!
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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: Prognosis after ASCT without any further treatment
Have multiple myeloma and diagnosed in 2012 in Portugal. My Initial treatment was with Velcade and other drugs, 4 and 1/2 cycles until,neuropathy started. Then ASCT an then the second one because of lack of complete response and impossible with maintenantance treatment because of neuropathy. Almost complete response again and now almost two years later without any treatment hoping for more healthy years, my oncologist thinking of another five. I take a day at at the time and grateful for all extra time. Getting back to normal slowly but surely. Takes a long time though.
I cannot fault the treatment I have had or the Porrtuguese health service and the doctors in any way. Couldn't have been better. ASCT not an easy way and second even more difficult but well worth it I think in the end.
I cannot fault the treatment I have had or the Porrtuguese health service and the doctors in any way. Couldn't have been better. ASCT not an easy way and second even more difficult but well worth it I think in the end.
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Aina
Re: Prognosis after ASCT without any further treatment
Thank you all for taking the time to answer my post.
I will see a specialist in myeloma this month, in the private sector, just to ensure that I am doing everything right.
However, in Portugal, we cannot (for example) have a ASCT in the private hospitals only in the public hospital (not complaining, the staff and doctors are amazing), but still, as some of you mentioned, that leaves me without all the possible options available, since it's not my call to make.
Thank's again and Best of luck to all!
I will see a specialist in myeloma this month, in the private sector, just to ensure that I am doing everything right.
However, in Portugal, we cannot (for example) have a ASCT in the private hospitals only in the public hospital (not complaining, the staff and doctors are amazing), but still, as some of you mentioned, that leaves me without all the possible options available, since it's not my call to make.
Thank's again and Best of luck to all!
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Alexandra Almeida - Name: Alexandra
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: october 2011
- Age at diagnosis: 38
5 posts
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