i'm in Canada so our health care system is different, but I'm worried I'm not being followed up closely enough.
I was diagnosed in 2010. I did my induction followed by autologous stem cell transplant in 2010. and I've been in remission since about 6 months post transplant.
My follow up is this:every three months I get blood work and see my doctor (in the myeloma clinic). They alternate M-spike and free lights tests I believe. Usually appointment lasts two minutes; they tell me my blood work looks fine, so I'm fine.
I have not had any scans in several years. I had one bone marrow biopsy at diagnosis, that's it.
I had a bone density test a few years ago. I'm told if myeloma comes back I will feel symptoms, and blood work would probably show anything before I feel it anyway.
Thoughts?
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Re: Follow-up protocol if you are in remission?
Hi Lys, I am in Alberta as I am sure you know (!). I get my blood work done every three months too, which usually includes CBC, albumin, alkaline phosphatase, ALT, BILT, EP, LD, SPE, serum free lite chains, immunoglobulins (IgG, IgA, IgM etc.).
I have had six skeletal surveys in five years, since I did have a lot of bone damage. I have had three bone marrow biopsies, but nothing since just after my ASCT in 2010. I have not yet had any MRI's or PET scans, but I think if I were to relapse those might be ordered. Here, if I really wanted an MRI and couldn't get one through the health care system, or was faced with a long wait, I could pay for one myself (about $800).
If I were to need to go back on treatment, then I would have to get the bone marrow biopsy done again, probably urine testing, as well as the regular blood tests. They don't start treatment without thoroughly checking out the situation!
I think that I am being monitored quite well, but of course others might have differing opinions on this matter! When I read of some of the monitoring that goes on south of our border, I know that my monitoring is more light than that.
My main concern is not whether or not I am in a state of complete remission, but whether or not it is advised I need more treatments. I trust my oncologist on that, so far he has got me through almost five years of survival!
I have had six skeletal surveys in five years, since I did have a lot of bone damage. I have had three bone marrow biopsies, but nothing since just after my ASCT in 2010. I have not yet had any MRI's or PET scans, but I think if I were to relapse those might be ordered. Here, if I really wanted an MRI and couldn't get one through the health care system, or was faced with a long wait, I could pay for one myself (about $800).
If I were to need to go back on treatment, then I would have to get the bone marrow biopsy done again, probably urine testing, as well as the regular blood tests. They don't start treatment without thoroughly checking out the situation!
I think that I am being monitored quite well, but of course others might have differing opinions on this matter! When I read of some of the monitoring that goes on south of our border, I know that my monitoring is more light than that.
My main concern is not whether or not I am in a state of complete remission, but whether or not it is advised I need more treatments. I trust my oncologist on that, so far he has got me through almost five years of survival!
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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: follow up protocol if you are in remission?
Well briefly I was diagnosed in '09, stem cell transplant '10, and CR until late last year. I started showing some signs of coming out of remission at that time. To date my lambda has risen to 54mg/dl. This was all shown on blood work, but at the end of January I had a clavicle break without any outside pressure. That didn't show in blood work.
I can't fault my doctor because I had no bone involvement at diagnosis. I've had full blood and urine work done at least every 90 days since the SCT. In retrospect, I think a bone survey would have been a good idea when I first had signs of the return of the disease signs.
I can't fault my doctor because I had no bone involvement at diagnosis. I've had full blood and urine work done at least every 90 days since the SCT. In retrospect, I think a bone survey would have been a good idea when I first had signs of the return of the disease signs.
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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: follow up protocol if you are in remission?
Something i just noticed .. a fridge magnet from the IMFthat I have had posted for a few years. It says ' contact your doctor if you have any of the following symptoms':
- New or worsening bone pain (especially in the back)
- Fever
- Rash (shingles or allergic reaction to treatment)
- Unusual bleeding
- Shortness of breath
- Pain, swelling or redness in calf
- Pain, weakness, or increasing numbness in the hands and/or feet
- Extreme fatigue and lethargy
- Uncontrolled nausea and vomiting, loss of appetite
- Severe constipation
I know that these guidelines are also for people who are taking chemotherapy treatments, as well as any of us who are not taking treatments at this time. Hope that helps, Lys!
Some people are of course' non secretory', and their M protein does not show up in blood testing, but the SFLC seems to cover that, usually. But I am no expert, just read a lot too, and try to make sense of all of the information that is available to us.
- New or worsening bone pain (especially in the back)
- Fever
- Rash (shingles or allergic reaction to treatment)
- Unusual bleeding
- Shortness of breath
- Pain, swelling or redness in calf
- Pain, weakness, or increasing numbness in the hands and/or feet
- Extreme fatigue and lethargy
- Uncontrolled nausea and vomiting, loss of appetite
- Severe constipation
I know that these guidelines are also for people who are taking chemotherapy treatments, as well as any of us who are not taking treatments at this time. Hope that helps, Lys!
Some people are of course' non secretory', and their M protein does not show up in blood testing, but the SFLC seems to cover that, usually. But I am no expert, just read a lot too, and try to make sense of all of the information that is available to us.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
4 posts
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