Bluemountain and Alex-
I think that one of the hardest things about myeloma is knowing that you have cancer, but that it is treated chronically. For most of us, there is no tumor that can be surgically removed, or seen. It is this omnipresent "something". Again, for many of us, we don't feel sick most of the time. Fatigued more often than usual maybe, but mostly ok. And, if you are a true non-secretor the doctor' pretty much have to go on how you feel to know when to look for problems.
I found that up until this past month, I have been unable emotionally to make plans more than a month or 2 in advance because I didn't have a sense that I might be well in the future. This past month I started making plans for 2014 with a couple of the things to take place next fall. I made these plans without thinking that I might not be able to do them because of the myeloma.
When I realized what I was doing, I was kind of shocked and pleased that I had overcome a major hurdle in my life. Will I still be ok into late 2014? I don't know and no one can predict. But, even without myeloma I can't predict that I will be ok into late 2014 either.
It might be helpful to see a counselor about how you are feeling. There are times in our lives when we need a little emotional support to move through whatever we are dealing with that is causing a road block in our lives. Having a cancer diagnosis is one of those times when many of us need that extra support.
I hope that we all have a wonderful 2014 and are as healthy as we can be.
Nancy in Phila
multiple myeloma '08, ASCT 1/10, Rev/Dex 12/12
Forums
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Remission, what does it mean?
I am 64, non-secretory, diagnosed January 10, 2010. Had 2 SCTs last in December 2013.
PET scan every 6 months, blood work every 3 months. Last PET I was told I was in complete remission. I go with the flow scan to scan. I stay very physically active right now - no pain anywhere, lots of stretching, personal trainer, etc. Very fortunate to be in good shape.
I think about relapse every day. It's not easy to deal with those thoughts. Will be seeing a therapist to help with emotional end of things.
I think that trust in your doctors is the most important.
Stay Strong!
PET scan every 6 months, blood work every 3 months. Last PET I was told I was in complete remission. I go with the flow scan to scan. I stay very physically active right now - no pain anywhere, lots of stretching, personal trainer, etc. Very fortunate to be in good shape.
I think about relapse every day. It's not easy to deal with those thoughts. Will be seeing a therapist to help with emotional end of things.
I think that trust in your doctors is the most important.
Stay Strong!
Re: Remission, what does it mean?
I've been battling multiple myeloma since 2003. In 2009 I had an autogenous stem cell transplant and have been on 10 mg of Revlimid ever since. My visits and blood work have been good. My doc has never ever said to me that I was in remission.
Things have never been the same as before the cancer. I have excruciating pains. I am exhausted and my spine hurts. Legs go numb if I walk or sit for to long. Thanks to the damage the multiple myeloma did, my life has never been the same. To me, the Revlimid has my multiple myeloma dormant.
Things have never been the same as before the cancer. I have excruciating pains. I am exhausted and my spine hurts. Legs go numb if I walk or sit for to long. Thanks to the damage the multiple myeloma did, my life has never been the same. To me, the Revlimid has my multiple myeloma dormant.
-
Joanne in Texas
Re: Remission, what does it mean?
Hi Alan,
Where are you in Australia?
I live in Perth and was diagnosed in February this year. I did several cycles of chemo, had a few other things happen along the way before having an transplant in July. I was told I am in remission and no further treatment is needed at this time. Just need to go back in January for bloods and a check up.
Being told I am in remission has not stopped me from thinking about being sick everyday, but I am working on it.
Cheers Claire
Where are you in Australia?
I live in Perth and was diagnosed in February this year. I did several cycles of chemo, had a few other things happen along the way before having an transplant in July. I was told I am in remission and no further treatment is needed at this time. Just need to go back in January for bloods and a check up.
Being told I am in remission has not stopped me from thinking about being sick everyday, but I am working on it.
Cheers Claire
-
ClaireK - Name: Claire
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2013
- Age at diagnosis: 43
Re: Remission, what does it mean?
To me remission means the myeloma is no longer growing.
Knowing it was growing was something I hated. It was relentless and just kept on growing. I have been in remission for over a year now. On the health side of things, the myeloma itself has left me with scars and the various treatments have all left their mark on me. I am a lot slower than I used to be, and there usually is some pain during the day.
But I am still enjoying life, my new normal is pretty good.
Knowing it was growing was something I hated. It was relentless and just kept on growing. I have been in remission for over a year now. On the health side of things, the myeloma itself has left me with scars and the various treatments have all left their mark on me. I am a lot slower than I used to be, and there usually is some pain during the day.
But I am still enjoying life, my new normal is pretty good.
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Remission, what does it mean?
Hi Alan et al,
I've been a multiple myeloma patient at the Dana Farber Cancer Institute in Boston since December of 2002. I think more in terms of 'response', partial or complete response, as opposed to remission, with this characteristically amorphous disease.
The brilliance of the oncology teams I see in action - my personal team in particular - depends on the ability to tweak and adjust the various combination therapies available to knock down and stay ahead of a resilient, agile myeloma. My oncologist waited until September 2012 to put me through an auto stem cell transplant.
My doctor and nurse practitioner encourage me to be as active as possible. My goal, since the SCT, is to get out everyday - especially on days when I'd rather not. I miss a day now and then, but I'm out enough that my endurance has improved. I've learned to enjoy walking, being alone with my thoughts, breathing fresh air and burning off the edgy tension that gets hold of me when inside for too long.
Sorry for the ramble, but it's connected in my mind.
I've been a multiple myeloma patient at the Dana Farber Cancer Institute in Boston since December of 2002. I think more in terms of 'response', partial or complete response, as opposed to remission, with this characteristically amorphous disease.
The brilliance of the oncology teams I see in action - my personal team in particular - depends on the ability to tweak and adjust the various combination therapies available to knock down and stay ahead of a resilient, agile myeloma. My oncologist waited until September 2012 to put me through an auto stem cell transplant.
My doctor and nurse practitioner encourage me to be as active as possible. My goal, since the SCT, is to get out everyday - especially on days when I'd rather not. I miss a day now and then, but I'm out enough that my endurance has improved. I've learned to enjoy walking, being alone with my thoughts, breathing fresh air and burning off the edgy tension that gets hold of me when inside for too long.
Sorry for the ramble, but it's connected in my mind.
Re: Remission, what does it mean?
Blue mountain, how are you? Did you have mouth sores? How did you handle that?
-
brandy - Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 67
Re: Remission, what does it mean?
Another important thing I believe that came out of ASH 2013 was the discussion of the importance of PET/CT in the context of "complete remission" (CR). Note that a European study showed that 29% of folks that allegedly obtained CR by conventional standards had positive uptake on their PET/CTs. Seems like one shouldn't rely on just blood work to determine CR.
https://myelomabeacon.org/resources/mtgs/ash2013/abs/1936/
This makes me also think of the recent smoldering study where it was discovered that approx 30% of patients previously diagnosed as smoldering also had PET/CT uptakes and were therefore dismissed from the study due to their misdiagnosis through lack of appropriate imaging.
Seems like PET/CT can be invaluable both up front during the diagnosis phases and for verifying remission.
https://myelomabeacon.org/resources/mtgs/ash2013/abs/1936/
This makes me also think of the recent smoldering study where it was discovered that approx 30% of patients previously diagnosed as smoldering also had PET/CT uptakes and were therefore dismissed from the study due to their misdiagnosis through lack of appropriate imaging.
Seems like PET/CT can be invaluable both up front during the diagnosis phases and for verifying remission.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Remission, what does it mean?
You know, it is still hard to determine what I ended up as far as remission. Flow testing confirmed 5% plasma cells and from there nothing else:
PET - Normal
Blood tests - Normal
No bone activity
No organ involvement
No calcium issues
No anemia issues
One suggestion from my specialist - and very strong suggestion - is that I have reverted to MGUS. To know if the 5% was an increase or decrease will have to wait until my next bone marrow biopsy. That might be a year away because I am non secretory and no light chains.
My specialist comments were that she saw no indicators that the myeloma was becoming active. We wait until next testing then either I am going up, going down, or staying the same (MGUS).
SCT was February 13 2013
I would love to hear from someone on where I stand or what is going on with me!
Thank you
PET - Normal
Blood tests - Normal
No bone activity
No organ involvement
No calcium issues
No anemia issues
One suggestion from my specialist - and very strong suggestion - is that I have reverted to MGUS. To know if the 5% was an increase or decrease will have to wait until my next bone marrow biopsy. That might be a year away because I am non secretory and no light chains.
My specialist comments were that she saw no indicators that the myeloma was becoming active. We wait until next testing then either I am going up, going down, or staying the same (MGUS).
SCT was February 13 2013
I would love to hear from someone on where I stand or what is going on with me!
Thank you
-
bluemountain
Re: Remission, what does it mean?
I was diagnosed in March of 2009 and had a stem cell transplant in April of 2010. My tests prior to the SCT had me back to normal except for anemia and a faint M-spike.
My lambda free light chain level started to rise about 3 months ago and has continued to rise. A month ago I had my collar bone break from a lesion. I have just completed a BMB and, while I have the results, I haven't been able to decipher them. On the other side, my anemia is all but gone, save for my platelets, and my other work is in the normal range except for my low lymphocytes.
My point is that remission for me has meant that I was able to go back to a point where my disease can be monitored from its new beginning. This is a far cry from a hgb of 7.2 and a creatinine of over 6. I hope that I can return to remission with early intervention.
My lambda free light chain level started to rise about 3 months ago and has continued to rise. A month ago I had my collar bone break from a lesion. I have just completed a BMB and, while I have the results, I haven't been able to decipher them. On the other side, my anemia is all but gone, save for my platelets, and my other work is in the normal range except for my low lymphocytes.
My point is that remission for me has meant that I was able to go back to a point where my disease can be monitored from its new beginning. This is a far cry from a hgb of 7.2 and a creatinine of over 6. I hope that I can return to remission with early intervention.
-
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
23 posts
• Page 2 of 3 • 1, 2, 3
Return to Treatments & Side Effects