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Re: AC's stem cell transplant in South Florida
What an honor! Will you be notified if a match happens? I was on their list for 20+ years until I aged out at my 61st birthday.
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: AC's stem cell transplant in South Florida
AC,
That is such a great story. As far as the transplant being a waste, I think with any cancer treatment you have to give it your best. Each person's cancer is different. What works for some is not the case with others. We are in that waiting stage between transplant and Day 90 to see if the transplant did good for my husband. Wishing you find the correct "myeloma butt kicker" treatment for you.
That is such a great story. As far as the transplant being a waste, I think with any cancer treatment you have to give it your best. Each person's cancer is different. What works for some is not the case with others. We are in that waiting stage between transplant and Day 90 to see if the transplant did good for my husband. Wishing you find the correct "myeloma butt kicker" treatment for you.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
What a tremendous tribute, AC! You've got some great friends there.
And what wonderful perspective you have about your transplant because of the registry drive.
But I hope that your transplant turns out to be a good thing for you too. Myeloma is such a strange disease that sometimes there is a delayed effect for the transplant.
Congratulations again on the tribute from your client!
Mike
And what wonderful perspective you have about your transplant because of the registry drive.
But I hope that your transplant turns out to be a good thing for you too. Myeloma is such a strange disease that sometimes there is a delayed effect for the transplant.
Congratulations again on the tribute from your client!
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: AC's stem cell transplant in South Florida
Just want to second the replies of the last 3 posters, AC. Thank you for sharing this inspirational story. Good luck.
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JPC - Name: JPC
Re: AC's stem cell transplant in South Florida
It's been an interesting week in myeloma land.
Yesterday I made it to Day 84 post transplant, but on Tuesday when I saw my myeloma specialist he reiterated that I needed to start my consolidation therapy of Velcade, dex, and Revlimid that Tuesday. My bone marrow biopsy came back with 25% plasma cells, which had grown from 20% before my stem cell transplant in May.
There was still a difference between my stem cell doctor wanting me to go on 10 mg Revlimid first and my myeloma specialist wanting to attack the myeloma and send it back into remission like I was close to when I started the the stem cell transplant. I was really hoping to wait to start until I had my rash/itch under control, but I sided with my myeloma specialist and started the consolidation therapy on Tuesday.
Since then I have been really lethargic and my sleep patterns have been way off again. I sure hope that I made the right decision to treat this aggressively. I have already taken the aggressive route with the stem cell transplant and was one of the few outliers that the stem cell did not help because the melphalan did not kill the myeloma when it wiped away everything else.
I am wishing everyone going though or getting ready to go into a stem cell transplant, that my case was truly a one out of X. If I had to do it all over again, I still would have had the transplant with the hope of the stem cell transplant keeping my myeloma in remission.
Yesterday I made it to Day 84 post transplant, but on Tuesday when I saw my myeloma specialist he reiterated that I needed to start my consolidation therapy of Velcade, dex, and Revlimid that Tuesday. My bone marrow biopsy came back with 25% plasma cells, which had grown from 20% before my stem cell transplant in May.
There was still a difference between my stem cell doctor wanting me to go on 10 mg Revlimid first and my myeloma specialist wanting to attack the myeloma and send it back into remission like I was close to when I started the the stem cell transplant. I was really hoping to wait to start until I had my rash/itch under control, but I sided with my myeloma specialist and started the consolidation therapy on Tuesday.
Since then I have been really lethargic and my sleep patterns have been way off again. I sure hope that I made the right decision to treat this aggressively. I have already taken the aggressive route with the stem cell transplant and was one of the few outliers that the stem cell did not help because the melphalan did not kill the myeloma when it wiped away everything else.
I am wishing everyone going though or getting ready to go into a stem cell transplant, that my case was truly a one out of X. If I had to do it all over again, I still would have had the transplant with the hope of the stem cell transplant keeping my myeloma in remission.
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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
AC,
I agree with your decision about consolidation. I think those myeloma cells need an additional kick in the butt to get going. Even though your plasma cell percentage went up, it is still not very high. Also, due to the patchy nature of bone marrow biopsies, you can have one spot with a reading higher or lower than another spot. Some people are minimal residual disease negative (MRD negative), but their labs still indicate the presence of an M-protein, because the bone marrow sample simply did not contain any myeloma cells.
Have you had a followup PET/CT scan after your transplant? Sometimes that is more informative of your disease status, especially if you had bony disease, which I think you did. Usually it is part of the complete workup at 100 days (or in most myeloma centers, anyway).
If I were in your shoes, I would do exactly what you are doing. Try to hang in there with the side effects, get help with any that are bothersome, like not sleeping, or digestive issues. These can definitely be addressed to make you more comfortable. The dex might actually counteract the rash, which could work out well for you.
Hang in there. I think these last myeloma cells won't survive the next assault. They are ripe and ready for destruction!
Keep us updated!
Ellen Harris
I agree with your decision about consolidation. I think those myeloma cells need an additional kick in the butt to get going. Even though your plasma cell percentage went up, it is still not very high. Also, due to the patchy nature of bone marrow biopsies, you can have one spot with a reading higher or lower than another spot. Some people are minimal residual disease negative (MRD negative), but their labs still indicate the presence of an M-protein, because the bone marrow sample simply did not contain any myeloma cells.
Have you had a followup PET/CT scan after your transplant? Sometimes that is more informative of your disease status, especially if you had bony disease, which I think you did. Usually it is part of the complete workup at 100 days (or in most myeloma centers, anyway).
If I were in your shoes, I would do exactly what you are doing. Try to hang in there with the side effects, get help with any that are bothersome, like not sleeping, or digestive issues. These can definitely be addressed to make you more comfortable. The dex might actually counteract the rash, which could work out well for you.
Hang in there. I think these last myeloma cells won't survive the next assault. They are ripe and ready for destruction!
Keep us updated!
Ellen Harris
Re: AC's stem cell transplant in South Florida
Thanks for the update, AC.
I agree with Ellen's assessment - I think it's good that you're doing the consolidation therapy.
I bet some of the lethargy and sleep problems you're having are simply the result of starting the new treatment relatively soon after the transplant. I hope you're feeling better soon.
And I very much hope that the consolidation treatment moves things in the right direction with regard to your myeloma!
Please do keep us posted on how things go.
I agree with Ellen's assessment - I think it's good that you're doing the consolidation therapy.
I bet some of the lethargy and sleep problems you're having are simply the result of starting the new treatment relatively soon after the transplant. I hope you're feeling better soon.
And I very much hope that the consolidation treatment moves things in the right direction with regard to your myeloma!
Please do keep us posted on how things go.
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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: AC's stem cell transplant in South Florida
AC, just thinking about you and hope you are doing well. 
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
Thank you for everyone's continued thoughts and prayers on the forum.
Today I celebrate Day 100 post stem cell transplant. Now my body and immune system will hopefully be able to right itself going forward. It's has been a tough 100 days, with the medical mystery rash and itch I have had since Day 2. Thank you so much to all the forum members who have posted and provided me encouragement on my rash and also on my numbers. The time since I last wrote on the forum has been the most difficult part since I was released on May 27th.
I started the Velcade, Revlimid, and dexamethasone and this Tuesday I will be finishing my first cycle. The GREAT news, and like a lot of the members kept writing, my kappa light chain level is now down to 23 from 183 in July. Whether it's the cycle of drugs or my body finally leveling off, I am very happy and very relieved that I am in shooting distance of the normal range. My lambda is still very low, but I know that takes time to increase and level off.
While the kappa light chain numbers are looking good, the past couple weeks with the rash and the itch were almost too much. For a period of three weeks I have been up round the clock with barely any sleep because the rash spread and the itch became worse. During this time, my wife also came down with a rash / itch just like I had. The doctors though it was her medicine because she has neuropathy from colon cancer meds.
At one point I wanted to take a knife and just scratch my skin until it stopped, I was going every week to a dermatologist at University of Miami who is part of the stem cell transplantation group, and he took multiple biopsies all over my body of the hives. They also took a scapula and scraped over 10 places to see if they could find something that was causing my itch and scratch. With my wife having the same symptoms, they thought it was a possibility that I contacted scabies while I was in he hospital.
Even though they could not find any evidence oft the scabies, last Monday as a last resort, the doctor had both my wife and myself take ivermectin pills as a kind of "Hail Mary." Within 24 hours, my itch had decreased by about 80%, and my wife's deceased substantially too. Truly a medical mystery, my dermatologist said, because in all the tests they could not find anything and the medicine is not supported to work that quick even for someone who actually has scabies. I just took my second dose and I hope that the rash / itch will be completely gone in a few days. It's crazy to think I had this rash / itch since the middle of the transplant.
Now is time for me to enjoy Day 100 by going to the beach and going out to dinner with my wife (wish I could have sushi, but I know that is a 2017 plan). Multiple myeloma / stem cell transplant / rash / etc. has brought a whole new perspective to everything I do and how I think. I look back at when I started the count to 100, and it seemed so far off, but in reality the time went very quickly. There were more than a couple of days (Day 3-5 for sure!) over the past 100 when I didn't truly know if I would make it or have the fight to see the 100th day. I know I have many twist and turns left with my myeloma, but I know with all my family, friends, and forum members prayers and support, I do not fight this battle alone and never will.
"Just Keep Swimming!"
AC
Today I celebrate Day 100 post stem cell transplant. Now my body and immune system will hopefully be able to right itself going forward. It's has been a tough 100 days, with the medical mystery rash and itch I have had since Day 2. Thank you so much to all the forum members who have posted and provided me encouragement on my rash and also on my numbers. The time since I last wrote on the forum has been the most difficult part since I was released on May 27th.
I started the Velcade, Revlimid, and dexamethasone and this Tuesday I will be finishing my first cycle. The GREAT news, and like a lot of the members kept writing, my kappa light chain level is now down to 23 from 183 in July. Whether it's the cycle of drugs or my body finally leveling off, I am very happy and very relieved that I am in shooting distance of the normal range. My lambda is still very low, but I know that takes time to increase and level off.
While the kappa light chain numbers are looking good, the past couple weeks with the rash and the itch were almost too much. For a period of three weeks I have been up round the clock with barely any sleep because the rash spread and the itch became worse. During this time, my wife also came down with a rash / itch just like I had. The doctors though it was her medicine because she has neuropathy from colon cancer meds.
At one point I wanted to take a knife and just scratch my skin until it stopped, I was going every week to a dermatologist at University of Miami who is part of the stem cell transplantation group, and he took multiple biopsies all over my body of the hives. They also took a scapula and scraped over 10 places to see if they could find something that was causing my itch and scratch. With my wife having the same symptoms, they thought it was a possibility that I contacted scabies while I was in he hospital.
Even though they could not find any evidence oft the scabies, last Monday as a last resort, the doctor had both my wife and myself take ivermectin pills as a kind of "Hail Mary." Within 24 hours, my itch had decreased by about 80%, and my wife's deceased substantially too. Truly a medical mystery, my dermatologist said, because in all the tests they could not find anything and the medicine is not supported to work that quick even for someone who actually has scabies. I just took my second dose and I hope that the rash / itch will be completely gone in a few days. It's crazy to think I had this rash / itch since the middle of the transplant.
Now is time for me to enjoy Day 100 by going to the beach and going out to dinner with my wife (wish I could have sushi, but I know that is a 2017 plan). Multiple myeloma / stem cell transplant / rash / etc. has brought a whole new perspective to everything I do and how I think. I look back at when I started the count to 100, and it seemed so far off, but in reality the time went very quickly. There were more than a couple of days (Day 3-5 for sure!) over the past 100 when I didn't truly know if I would make it or have the fight to see the 100th day. I know I have many twist and turns left with my myeloma, but I know with all my family, friends, and forum members prayers and support, I do not fight this battle alone and never will.
"Just Keep Swimming!"
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
Re: AC's stem cell transplant in South Florida
So glad to hear from you, and wow, sorry the rash has been so stubborn. Why ever the new med is working, I am glad it is. I hope this will be you turnaround with it. Also so great about your numbers.
Wishing you continued success with that.
Wishing you continued success with that.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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