Tracy,
I wish you well with your maintenance regime. Dropping the cyclophosphamide should make you feel better, and give you peace of mind regarding complications from this drug. I did a similar thing with my maintenance, which was supposed to be Revlimid, Velcade, and dexamethasone (RVD) at reduced levels. I dropped the Revlimid after about 6 months due to severe muscle pain and cramping. Doctor was not sure if that was the cause, but it did subside after going off everything for a couple of months. Then I resumed on Velcade and dex (12 mg), bi-weekly. So far, so good. Keep us posted!
Forums
Re: It's time for re-staging
That is great news! Congratulations.! It'll be nice to be on the reduced dosages, especially dex. And to drop the Cytoxan is great too. Why add it in if you don't need to? My motto is less is more.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: It's time for re-staging
Prayers and good thoughts.
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MQuarter - Name: MaryQ
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/2015
- Age at diagnosis: 58
Re: It's time for re-staging
Hi Tracy - Thanks for sharing your good restaging news with us. Congratulations! And it sounds like a good decision to just go with Pomalyst and dex for maintenance. Best wishes for a long and side effect-free remission period!
Hi Mark11 - Yes, I do the 24-hour urine test monthly because of the trial I'm in. I don't think they have ever found any Bence Jones proteins in my samples. I want to keep it that way!
Mike
Hi Mark11 - Yes, I do the 24-hour urine test monthly because of the trial I'm in. I don't think they have ever found any Bence Jones proteins in my samples. I want to keep it that way!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: It's time for re-staging
Great news, Tracy J.
I have been trying to stay active with the grandkids, golf, and other activities and have not been keeping up with the new topics and posts. Therefore, I missed your new post earlier this month.
Wish you continued success! I can't thank you and others enough for all the practical advice that helped me tolerate the induction therapy last year.
I have been phasing into maintenance, too. My kappa and kappa / lambda ratios are fluctuating a bit and staying above 'normal,' but with each of the data points 4 weeks apart, it's hard to keep worrying about them. I am on 'Revlimid only' maintenance since my oncologist wants me to avoid the dex altogether due to its long-term side effects.
Again, wish you all the best and hope you can tolerate the maintenance doses without any major side effects.
K_Shash
I have been trying to stay active with the grandkids, golf, and other activities and have not been keeping up with the new topics and posts. Therefore, I missed your new post earlier this month.
Wish you continued success! I can't thank you and others enough for all the practical advice that helped me tolerate the induction therapy last year.
I have been phasing into maintenance, too. My kappa and kappa / lambda ratios are fluctuating a bit and staying above 'normal,' but with each of the data points 4 weeks apart, it's hard to keep worrying about them. I am on 'Revlimid only' maintenance since my oncologist wants me to avoid the dex altogether due to its long-term side effects.
Again, wish you all the best and hope you can tolerate the maintenance doses without any major side effects.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: It's time for re-staging
God Bless you Tracy. I'm happy to hear your good news and wish you the very best. May you maintain the low counts and continue to recover into good health and vitality for many years!
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: It's time for re-staging
Thanks for the suggestion, mrozdav. That will make things easier.
Great news, TracyJ.
Great news, TracyJ.
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Mark11
Re: It's time for re-staging
Thanks to everyone for your good thoughts!
Finally got the formal addendum on the PET CT. There is one new spot of uptake, but it's so very small. The radiologist commented that it looks like the sort of thing that everyone gets once in a while, from strain or minor trauma that might be too mild to even remember. It does NOT look like myeloma. Also noted were the anterior rib fractures, from September when my 105 lb yellow lab pulled me over on the leash, going into dog class for DOGS THAT PULL ON LEASHES and other behavior problems. I knew I had fractured a rib! Vindication! (By the way, the beloved dog is growing out of adolescence and starting to get fat, so he's not pulling so much anymore.)
Anyway, that's the final piece of information needed to officially say I'm still in remission. That's one year now. Whew. Now I move to maintenance.
Pomalidomide 4 mg daily, days 1-21, then 7 days off.
Dexamethasone 8 mg weekly x three weeks, then 7 days off.
And that's it!
Finally got the formal addendum on the PET CT. There is one new spot of uptake, but it's so very small. The radiologist commented that it looks like the sort of thing that everyone gets once in a while, from strain or minor trauma that might be too mild to even remember. It does NOT look like myeloma. Also noted were the anterior rib fractures, from September when my 105 lb yellow lab pulled me over on the leash, going into dog class for DOGS THAT PULL ON LEASHES and other behavior problems. I knew I had fractured a rib! Vindication! (By the way, the beloved dog is growing out of adolescence and starting to get fat, so he's not pulling so much anymore.)
Anyway, that's the final piece of information needed to officially say I'm still in remission. That's one year now. Whew. Now I move to maintenance.
Pomalidomide 4 mg daily, days 1-21, then 7 days off.
Dexamethasone 8 mg weekly x three weeks, then 7 days off.
And that's it!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: It's time for re-staging
Hope it lasts for a long, long, long time Tracy. Good luck.
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JPC - Name: JPC
Re: It's time for re-staging
Sensational news Tracy!
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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