Congratulations, Gary. People do care about one another, hence all the replies.
I find it interesting you found great support in letting go and having faith in " a higher power". I have new found faith and peace also.
All the best,
Carol.
Forums
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cazzamac - Name: cazzamac
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2016.
Re: 19th anniversary of multiple myeloma diagnosis
Congratulations, Gary, a fantastic anniversary that gives hope to all multiple myeloma patients.
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canta - Name: Paul Canta
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 26/9/2016
- Age at diagnosis: 50
Re: 19th anniversary of multiple myeloma diagnosis
Ilse wrote:
Ilse,
That is also impressive! What treatment has given you a 10-year remission? Congrats to you and Gary!
I was diagnosed at age 44, same as you, and have 25 years of multiple myeloma behind me, with the past 10 years without treatment.
Ilse,
That is also impressive! What treatment has given you a 10-year remission? Congrats to you and Gary!
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: 19th anniversary of multiple myeloma diagnosis
Thank you again! I am just grateful that I can still say this!
I have started on a new chemo, this time it's Ninlaro (ixazomib) and dex (always dex!). I'm a week into it and so far there hasn't been any side effects that I've noticed, well except for the dex.
I have started on a new chemo, this time it's Ninlaro (ixazomib) and dex (always dex!). I'm a week into it and so far there hasn't been any side effects that I've noticed, well except for the dex.
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: 19th anniversary of multiple myeloma diagnosis
Hi Gary,
Great news that multiple myeloma has been a only chronic disease for you rather than a death sentence!
With newer and more effective drugs like Ninlaro (and possibly marizomib coming available soon), I worry less about multiple myeloma and focus on other aspects of living, like trying to recover for all the bone and muscles issues since I got multiple myeloma (stage 3) almost 2 years ago. Certainly these oral medications give us more freedom and a better quality of life.
I've been on Ninlaro (ixazomib) maintenance for 9 months and been happy with the results so far using:
3 mg Ninlaro and 20 mg dex (3 weeks out of 4 weeks) for 7 months, then dropping to 2.3 mg Ninlaro and 4 mg dex (3 weeks out of 4) with no more dex-related insomnia or crashing
over the last few weeks.
I read that the max peak concentration of dex in the blood stream is about 1 hour after the pill and 4 -6 hours later to feel the effects in the muscles tissue. The max Ninlaro concentration in the blood stream is 1 hour after the pill with best result if avoiding high-fat meals 1 hour before or 2 hours after taking Ninlaro. So at these low dosages, best efficacy for zapping the myeloma cells in the blood with a maximum dex and Ninlaro concentration, seems to be taking one 4 mg dex pill less than or equal to 1 hour before taking the 2.3 mg Ninlaro pill. (I take them in the morning after a low fat breakfast)
So far it seems to be holding down my myeloma plasma cell count to less than 2% in my blood, per a bone marrow biopsy results. I never had a stem cell transplant or bone marrow transplant and will hold out on this as a last resort. I learned in biology that a single cell grows by splitting in half, and cell growth rate is exponential to the power of 2, so I concluded I would rather have some low level of myeloma inside of me and keep beating down with low level chemo, since I believe that a stem cell transplant is unlikely to eliminate ALL the myeloma plasma cells.
However, I did find that dropping to a lower dosage of dex caused secondary adrenal insufficiency (dex withdrawal and low cortisol issues) like afternoon fatigue, body aches, muscles weirdness/spasms (fixed with tonic water containing quinine), even after tapering myself down slowly off the steroid at 16, 12, 8 and then 4 mg over 1-2 months. I was told it can take a very long time to recover from secondary adrenal insufficiency.
Bob
Great news that multiple myeloma has been a only chronic disease for you rather than a death sentence!
With newer and more effective drugs like Ninlaro (and possibly marizomib coming available soon), I worry less about multiple myeloma and focus on other aspects of living, like trying to recover for all the bone and muscles issues since I got multiple myeloma (stage 3) almost 2 years ago. Certainly these oral medications give us more freedom and a better quality of life.
I've been on Ninlaro (ixazomib) maintenance for 9 months and been happy with the results so far using:
3 mg Ninlaro and 20 mg dex (3 weeks out of 4 weeks) for 7 months, then dropping to 2.3 mg Ninlaro and 4 mg dex (3 weeks out of 4) with no more dex-related insomnia or crashing
over the last few weeks.
I read that the max peak concentration of dex in the blood stream is about 1 hour after the pill and 4 -6 hours later to feel the effects in the muscles tissue. The max Ninlaro concentration in the blood stream is 1 hour after the pill with best result if avoiding high-fat meals 1 hour before or 2 hours after taking Ninlaro. So at these low dosages, best efficacy for zapping the myeloma cells in the blood with a maximum dex and Ninlaro concentration, seems to be taking one 4 mg dex pill less than or equal to 1 hour before taking the 2.3 mg Ninlaro pill. (I take them in the morning after a low fat breakfast)
So far it seems to be holding down my myeloma plasma cell count to less than 2% in my blood, per a bone marrow biopsy results. I never had a stem cell transplant or bone marrow transplant and will hold out on this as a last resort. I learned in biology that a single cell grows by splitting in half, and cell growth rate is exponential to the power of 2, so I concluded I would rather have some low level of myeloma inside of me and keep beating down with low level chemo, since I believe that a stem cell transplant is unlikely to eliminate ALL the myeloma plasma cells.
However, I did find that dropping to a lower dosage of dex caused secondary adrenal insufficiency (dex withdrawal and low cortisol issues) like afternoon fatigue, body aches, muscles weirdness/spasms (fixed with tonic water containing quinine), even after tapering myself down slowly off the steroid at 16, 12, 8 and then 4 mg over 1-2 months. I was told it can take a very long time to recover from secondary adrenal insufficiency.
Bob
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Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
Re: 19th anniversary of multiple myeloma diagnosis
Congratulations. That is very inspiring. At 69 years old, I'm not sure I want to live another 19 years, but it really gives hope to know it's possible.
Thanks for sharing.
Thanks for sharing.
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Memakes4 - Name: Nancy
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 69
Re: 19th anniversary of multiple myeloma diagnosis
Well, Nancy, my father has been battling chronic leukemia and heart disease for about twenty years now. He complains that he is too old to be old.
But he's 91 and looking forward to his centennial birthday.
I guess it's true that getting old ain't for sissies, but really; do we have to be this brave?
I hope that you will have your nineteen years and enjoy every one of 'em.
But he's 91 and looking forward to his centennial birthday.
I guess it's true that getting old ain't for sissies, but really; do we have to be this brave?
I hope that you will have your nineteen years and enjoy every one of 'em.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: 19th anniversary of multiple myeloma diagnosis
Gary,
Congratulations on your positive attitude and your long survival! I'm sure they're connected.
Marilyn
Congratulations on your positive attitude and your long survival! I'm sure they're connected.
Marilyn
Re: 19th anniversary of multiple myeloma diagnosis
Ilse,
I'm so impressed by your 25-year (and still going strong) survival! No treatment for the last ten years?!! To what do you attribute your success? Were you considered a high-risk patient at the start? I want to be like you!
I'm doing great after two months in the induction phase, but have to decide soon on whether to have a stem cell transplant.
Keep it up!
Marilyn
I'm so impressed by your 25-year (and still going strong) survival! No treatment for the last ten years?!! To what do you attribute your success? Were you considered a high-risk patient at the start? I want to be like you!
I'm doing great after two months in the induction phase, but have to decide soon on whether to have a stem cell transplant.
Keep it up!
Marilyn
Re: 19th anniversary of multiple myeloma diagnosis
GaryH,
Congratulations and much appreciation for sharing your successful journey. I was diagnosed in March of 2016. Currently have achieved a "drug-induced" remission. Was Stage 3, high risk,at diagnosis. Just beginning to investigate and educate myself about transplant options, frankly with a lot of fear of the unknown. The best to you, will be pulling for you!
Congratulations and much appreciation for sharing your successful journey. I was diagnosed in March of 2016. Currently have achieved a "drug-induced" remission. Was Stage 3, high risk,at diagnosis. Just beginning to investigate and educate myself about transplant options, frankly with a lot of fear of the unknown. The best to you, will be pulling for you!
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
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