Hi AC,
Reading of your journey has been so interesting and insightful. My dad was recently diagnosed and he also has kappa free myeloma and we are also in South Florida. I grew up in Boca and we are now in west Lake Worth (small world). Your journey sounds very similar to what we may be enduring in the near future as we just had our consultation with a myeloma specialist at Sylvester. I would love to learn how you are doing now.
We are really trying to "just keep swimming" but as you know it is so difficult to maintain that Dory attitude, but we need it in order to get through this!
I hope to hear from you!
Christie
Forums
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ChristieR - Name: Christie
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: February 2017
- Age at diagnosis: 54
Re: AC's stem cell transplant in South Florida
I wish everyone the best that have been providing comments. It has been since last fall that i posted. I feel like I have been in yo-yo land these last 8 months. I was on the Velcade, Revlimid, and dexamethasone until January 1st.. My number would get pushed down on every cycle and during the week off they would spike again to around 70 from 22-25. Never could pass through the barrier of 19.5 for the high-end of normal. Was very frustrated and a little depressed to see my numbers jump every off week from the cycle, especially since the stem cell transplant did not help (I would still do it again all over because the numbers I have read suggest the stem cell transplant has the best outcomes).
In January, I switched to Kyprolis, Revlimid, and dex (dex decreased from 40 mg to 20 mg). During the first cycle the numbers fell to 17 but my lambda still was around 2. During my off week my numbers only increased to 30. The last two cycles I have even seen better results, where my number would decrease to 12 and only increase to 20 during my off week. My last cycle even showed my lambda finally move higher after the 1 1/2 years of treatment to around 7 with a ratio close to normal during my off week.
I started a new cycle today which might be my last cycle until after the summer time. I have and continue to learn so much about myeloma and the combinations available. As many have echoed, myeloma is so personal. What works for one doesn't work for another, and the best possible course is for someone to find a myeloma expert they can trust that knows all the combinations and new drugs available. Two weeks ago, I had a scare when I developed pneumonia and was hospitalized for five days with a fever over 103 F (39.4 C) and coughing like I have never before.
Thankfully, I have fully recovered and even was able to spend two hours snorkeling on Easter without any problems. For those who the stem cell transplant doesn't work, please know that there are lots of possibilities out there to help manage the myeloma. For everyone out there with myeloma, I send my prayers and my best. We all fight an individual battle that only we know and have to go through.
I still live by the motto, I wrote from Dory on Nemo. "Just keep swimming! "
In January, I switched to Kyprolis, Revlimid, and dex (dex decreased from 40 mg to 20 mg). During the first cycle the numbers fell to 17 but my lambda still was around 2. During my off week my numbers only increased to 30. The last two cycles I have even seen better results, where my number would decrease to 12 and only increase to 20 during my off week. My last cycle even showed my lambda finally move higher after the 1 1/2 years of treatment to around 7 with a ratio close to normal during my off week.
I started a new cycle today which might be my last cycle until after the summer time. I have and continue to learn so much about myeloma and the combinations available. As many have echoed, myeloma is so personal. What works for one doesn't work for another, and the best possible course is for someone to find a myeloma expert they can trust that knows all the combinations and new drugs available. Two weeks ago, I had a scare when I developed pneumonia and was hospitalized for five days with a fever over 103 F (39.4 C) and coughing like I have never before.
Thankfully, I have fully recovered and even was able to spend two hours snorkeling on Easter without any problems. For those who the stem cell transplant doesn't work, please know that there are lots of possibilities out there to help manage the myeloma. For everyone out there with myeloma, I send my prayers and my best. We all fight an individual battle that only we know and have to go through.
I still live by the motto, I wrote from Dory on Nemo. "Just keep swimming! "
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
Hi, AC
So glad to hear from you. Just wanted to say I am happy for you as you are taking better control over your myeloma. Sorry to hear you have been through rough times. You have a great attitude and I wish you and your family all the very best.
My sister's transplant was very hard on her and she has now relapsed just about 3 months after her transplant. She has also developed a bad cough following a virus, so I can relate to what you have been describing. We do keep looking into the future and hoping for the best. Posts like yours are very encouraging and inspirational.
So glad to hear from you. Just wanted to say I am happy for you as you are taking better control over your myeloma. Sorry to hear you have been through rough times. You have a great attitude and I wish you and your family all the very best.
My sister's transplant was very hard on her and she has now relapsed just about 3 months after her transplant. She has also developed a bad cough following a virus, so I can relate to what you have been describing. We do keep looking into the future and hoping for the best. Posts like yours are very encouraging and inspirational.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: AC's stem cell transplant in South Florida
Great to hear from you AC. While you are still battling, it sounds like progress has been achieved and that is all we can hope for. Good luck with continued success.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: AC's stem cell transplant in South Florida
Hi AC,
I am so grateful to see your update and to hear you are able to be snorkeling and enjoying the beach with your family! My dad starts his harvesting on Wednesday at UM Sylvester Cancer Center. We are all very anxious and nervous but hoping for the best.
When my father was diagnosed in February 2017, his kappa free light chains were 13974 mg/L and he was in complete kidney failure, with creatinine at 10. After 6 weeks of dialysis and a "kidney friendly" treatment regimen, his kidneys started to function on their own, and his creatinine has been stable since and under 1.
As of June 2017 his kappa free light chain is at 2 mg/L. Not a typo. From almost 14000 to 2. We are so fortunate, I cannot express it enough.
Hang in there and please don't lose your positive spirit. In February our doctors were preparing us for the possibility of life on dialysis with no options for a more aggressive treatment regimen because of his kidney impairment, and within 2 months he was on a more aggressive treatment regimen to his kidneys, which really kicked those kappa free light chains in the butt. The past 5ish months have not been without complications; relentless skin rashes, pneumonia, renal diet, 4 compression fractions, 3 kyphoplasty surgeries. It has been a lot.
With all of the bumps in the road, we cannot let it get us down, just keep swimming! Literally and figuratively, enjoy our beautiful Florida beaches and don't give up on beating myeloma! Thank you for being the light we needed this week.
Best,
Christie
I am so grateful to see your update and to hear you are able to be snorkeling and enjoying the beach with your family! My dad starts his harvesting on Wednesday at UM Sylvester Cancer Center. We are all very anxious and nervous but hoping for the best.
When my father was diagnosed in February 2017, his kappa free light chains were 13974 mg/L and he was in complete kidney failure, with creatinine at 10. After 6 weeks of dialysis and a "kidney friendly" treatment regimen, his kidneys started to function on their own, and his creatinine has been stable since and under 1.
As of June 2017 his kappa free light chain is at 2 mg/L. Not a typo. From almost 14000 to 2. We are so fortunate, I cannot express it enough.
Hang in there and please don't lose your positive spirit. In February our doctors were preparing us for the possibility of life on dialysis with no options for a more aggressive treatment regimen because of his kidney impairment, and within 2 months he was on a more aggressive treatment regimen to his kidneys, which really kicked those kappa free light chains in the butt. The past 5ish months have not been without complications; relentless skin rashes, pneumonia, renal diet, 4 compression fractions, 3 kyphoplasty surgeries. It has been a lot.
With all of the bumps in the road, we cannot let it get us down, just keep swimming! Literally and figuratively, enjoy our beautiful Florida beaches and don't give up on beating myeloma! Thank you for being the light we needed this week.
Best,
Christie
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ChristieR - Name: Christie
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: February 2017
- Age at diagnosis: 54
Re: AC's stem cell transplant in South Florida
Hi AC,
I hope you continue to do well. Unfortunately, my stem cell transplant did not work, either. I just found out this past week that my M-spike and free light chains are higher than they were going into transplant. It wasn't even 60 days post transplant. I'll be going back on Darzalex, Velcade, and dexamethasone regimen I was on before the transplant to hopefully knock it down. and my specialist has a back up regimen and is looking into getting me a spot in a CAR-T cell clinical trial. I'm pretty upset and defeated right now, but you give me just a little bit of hope. I wish you the best.
Stephanie
I hope you continue to do well. Unfortunately, my stem cell transplant did not work, either. I just found out this past week that my M-spike and free light chains are higher than they were going into transplant. It wasn't even 60 days post transplant. I'll be going back on Darzalex, Velcade, and dexamethasone regimen I was on before the transplant to hopefully knock it down. and my specialist has a back up regimen and is looking into getting me a spot in a CAR-T cell clinical trial. I'm pretty upset and defeated right now, but you give me just a little bit of hope. I wish you the best.
Stephanie
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stefania888 - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2016
- Age at diagnosis: 30
Re: AC's stem cell transplant in South Florida
Stephanie, be strong. That's easier said than done, I am sure. It's heartbreaking to endure a transplant and have it fail. I can only imagine your disappointment and frustration. My heart and prayer for your future treatments. Keep fighting and try to be positive.
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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
Re: AC's stem cell transplant in South Florida
I can now speak from experience on the stem cell transplant, failing but I would not change anything. My stem cell transplant failed and if anybody read about my experience last year, I knew within a week after finishing the stem cell transplant that my numbers had increased. My kappa free light chain level was higher one week after my stem cell transplant than a month before the transplant.
After all the reading and talking to the doctors over the past year plus I have learned that for those of us that the stem cell transplant does fail it's because our myeloma is melphalan resistant. Unfortunately, there is no test to see if the myeloma is melphalan resistant before the stem cell transplant. Please, do not let the possibility of the stem cell transplant failing stop anybody from undergoing the transplant because the odds are the stem cell transplant will work.
I am now a year plus out and since January, I have been on Kyprolis, Revlimid, and dexamethasone. None of the meds really brought my kappa level under the 19.6 normal number. The Velcade, Revlimid, and dex (VRD) regimen never brought my numbers down past 60. However, the Kyrpolis brought my numbers all the way to 4. I have been on a treatment holiday for the summer so I can scuba and spend time in the water, and the Kyprolis has kept numbers in check where after eight weeks of no treatment, my numbers are only back to 20.
All of our myeloma is different and different drug cocktails will work different. We just have to find one of the drugs that will work on the specific active myeloma. I understand the frustration and heartbreak to go through the stem cell transplant and other drugs only to find out they do not work. As I have written before, we have to "just keep swimming" to find the medicine that works.
AC
After all the reading and talking to the doctors over the past year plus I have learned that for those of us that the stem cell transplant does fail it's because our myeloma is melphalan resistant. Unfortunately, there is no test to see if the myeloma is melphalan resistant before the stem cell transplant. Please, do not let the possibility of the stem cell transplant failing stop anybody from undergoing the transplant because the odds are the stem cell transplant will work.
I am now a year plus out and since January, I have been on Kyprolis, Revlimid, and dexamethasone. None of the meds really brought my kappa level under the 19.6 normal number. The Velcade, Revlimid, and dex (VRD) regimen never brought my numbers down past 60. However, the Kyrpolis brought my numbers all the way to 4. I have been on a treatment holiday for the summer so I can scuba and spend time in the water, and the Kyprolis has kept numbers in check where after eight weeks of no treatment, my numbers are only back to 20.
All of our myeloma is different and different drug cocktails will work different. We just have to find one of the drugs that will work on the specific active myeloma. I understand the frustration and heartbreak to go through the stem cell transplant and other drugs only to find out they do not work. As I have written before, we have to "just keep swimming" to find the medicine that works.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
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