Hi Cindy,
I was just wondering how you are? I am also curious if your not being a 100% donor match has any reflection on the ills you are having / had. Hope you are well already or very soon.
Yours Vicki
Forums
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: My mini-allo transplant journey
Cindy,
I've been following you and keep your story open on a tab so I can check in frequently. Sorry to hear of the 4th of July excitement. Hope you are able to get better soon and get home on the 23d. I am praying for you.
I've also enjoyed reading Mark's and Teresa's viewpoints. I've had two ASCTs and with my relatively young age and somewhat risky cytogenetics may also have an allo. It could even be at Seattle. It is such a big decision and you are obviously walking through it all with inspiring courage. So, thank you so much for sharing your journey. You are teaching us.
God bless, Brent
I've been following you and keep your story open on a tab so I can check in frequently. Sorry to hear of the 4th of July excitement. Hope you are able to get better soon and get home on the 23d. I am praying for you.
I've also enjoyed reading Mark's and Teresa's viewpoints. I've had two ASCTs and with my relatively young age and somewhat risky cytogenetics may also have an allo. It could even be at Seattle. It is such a big decision and you are obviously walking through it all with inspiring courage. So, thank you so much for sharing your journey. You are teaching us.
God bless, Brent
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Brent
Re: My mini-allo transplant journey
Greetings Cindy,
Thanks so much for sharing your journey. Fascinating stuff. I've had 2 ASCTs and my docs want me to keep an allo in the back of my mind as a last resort. I'm a 9-year survivor and treatment is going well. I wish you all the best in your journey and look forward to future updates.
Be well,
Phil
Thanks so much for sharing your journey. Fascinating stuff. I've had 2 ASCTs and my docs want me to keep an allo in the back of my mind as a last resort. I'm a 9-year survivor and treatment is going well. I wish you all the best in your journey and look forward to future updates.
Be well,
Phil
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Phil Kur
Re: My mini-allo transplant journey
My preliminary BMB results show less than 1% plasma cells – good news. The doctor told me today that they are going to recommend Revlimid maintenance until I am off immunosuppression and then will discuss at that time whether or not to continue.
I have not found data on maintenance after allo. Any thoughts or insights from those of you that really get all the science? They added that Revlimid increases my chances of GVHD problems.
My white counts remain in the gutter and that is frustrating me and my doctors. They are working with the pharmacist to see if they think it might be medication-related, but they do not think it is likely.
I had a Neupogen shot today. Lots of bone pain.
Despite this, they still are planning to let me return to California next Thursday and do "telemedicine" with my local oncologists. I have been away for 10 months, so that will be nice. I am a little anxious about the transition, but SCCA assures me that they can handle it.
Thanks for all the support!
Cindy
I have not found data on maintenance after allo. Any thoughts or insights from those of you that really get all the science? They added that Revlimid increases my chances of GVHD problems.
My white counts remain in the gutter and that is frustrating me and my doctors. They are working with the pharmacist to see if they think it might be medication-related, but they do not think it is likely.
I had a Neupogen shot today. Lots of bone pain.
Despite this, they still are planning to let me return to California next Thursday and do "telemedicine" with my local oncologists. I have been away for 10 months, so that will be nice. I am a little anxious about the transition, but SCCA assures me that they can handle it.
Thanks for all the support!
Cindy
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: My mini-allo transplant journey
Hi Cindy,
As always, I really appreciate your updates, and I'm so glad to hear that you're able to go home, be in more familiar surroundings, and be closer to friends and family. I hope your white cell counts recover soon.
Here's a list of articles about Revlimid maintenance after allo transplants.
After a VERY quick skim of the articles, it looks to me that your doctors have told you the main thing you need to know: taking the drug will increase your chances of GVHD. I suspect they are recommending the option, however, because they are not too worried about that risk, and they think whatever risk there may be of it happening is worth the extra insurance the Revlimid will give you.
Since Revlimid can suppress blood cell counts, that's something you and your doctors will need to continue being vigilant about. Again, I'm sure your doctors know this.
Good luck!
As always, I really appreciate your updates, and I'm so glad to hear that you're able to go home, be in more familiar surroundings, and be closer to friends and family. I hope your white cell counts recover soon.
Here's a list of articles about Revlimid maintenance after allo transplants.
After a VERY quick skim of the articles, it looks to me that your doctors have told you the main thing you need to know: taking the drug will increase your chances of GVHD. I suspect they are recommending the option, however, because they are not too worried about that risk, and they think whatever risk there may be of it happening is worth the extra insurance the Revlimid will give you.
Since Revlimid can suppress blood cell counts, that's something you and your doctors will need to continue being vigilant about. Again, I'm sure your doctors know this.
Good luck!
Re: My mini-allo transplant journey
Hi Cindy,
I haven't been on the Beacon for quite a while so had missed most of your story. The great thing is that you are well on your way to controlling this disease. Maintenance after an allo will be dependent on the patient & what their response was like.
I had my allo in April 2011 and have not been on any medications to control the myeloma (only medications to control GVHD
).
All the best,
Libby
I haven't been on the Beacon for quite a while so had missed most of your story. The great thing is that you are well on your way to controlling this disease. Maintenance after an allo will be dependent on the patient & what their response was like.
I had my allo in April 2011 and have not been on any medications to control the myeloma (only medications to control GVHD
).All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: My mini-allo transplant journey
Hi Cindy:
I don't want to disagree with Dan's first sentence. However, I will crank it up a little bit. You are a "myeloma hero" for all of the information and insight that you have provided to the Beacon community. Thank you, and best of luck for your continued recovery.
Best Regards, JPC
I don't want to disagree with Dan's first sentence. However, I will crank it up a little bit. You are a "myeloma hero" for all of the information and insight that you have provided to the Beacon community. Thank you, and best of luck for your continued recovery.
Best Regards, JPC
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JPC - Name: JPC
Re: My mini-allo transplant journey
Hi Cindy,
Congrats on the excellent BMB results! Great to hear you are going to go home. Ten months is a long time. Positive vibes being sent your way that everything goes smooth once you get back home. They would not be sending you home if they thought it would pose extra risks.
Cheryl G is correct - they will have to monitor you closely if you go on Revlimid maintenance for potential GVHD. Laura Scott, who posts from time to time here in the forum, used Revlimid after her allo as part of the trial she was in. Hopefully she will check in and give her experience with it.
Mark
Congrats on the excellent BMB results! Great to hear you are going to go home. Ten months is a long time. Positive vibes being sent your way that everything goes smooth once you get back home. They would not be sending you home if they thought it would pose extra risks.
Cheryl G is correct - they will have to monitor you closely if you go on Revlimid maintenance for potential GVHD. Laura Scott, who posts from time to time here in the forum, used Revlimid after her allo as part of the trial she was in. Hopefully she will check in and give her experience with it.
Mark
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Mark11
Re: My mini-allo transplant journey
Cindy -
I join others in commending you on your courage and sharing your experiences with us. I am a stranger to you but know I will be thinking of you and checking in on this post to see how you are doing.
I join others in commending you on your courage and sharing your experiences with us. I am a stranger to you but know I will be thinking of you and checking in on this post to see how you are doing.
Re: My mini-allo transplant journey
I got a great response from the Neupogen. Now I just have to hope my levels stay up (I think this is the first time my WBC count has been over 3 since diagnosis).
They are having trouble stabilizing my cyclosporine and sirolimus levels, but I did discontinue the MMF. It is nice not having all the dietary restrictions that go along with that.
This morning I woke up with vertigo which I have never experienced before. The doctor who I saw today does not think it is related to the transplant or myeloma (and neither do I), but I sure hope it goes away. As all of you can relate, I don't want another health thing to deal with right now!
Hope everyone has a great weekend. It's going to be 90 degrees in Seattle, which is pretty rare. Fortunately my parents have air conditioning!
Cindy
They are having trouble stabilizing my cyclosporine and sirolimus levels, but I did discontinue the MMF. It is nice not having all the dietary restrictions that go along with that.
This morning I woke up with vertigo which I have never experienced before. The doctor who I saw today does not think it is related to the transplant or myeloma (and neither do I), but I sure hope it goes away. As all of you can relate, I don't want another health thing to deal with right now!
Hope everyone has a great weekend. It's going to be 90 degrees in Seattle, which is pretty rare. Fortunately my parents have air conditioning!
Cindy
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
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