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Re: My mini-allo transplant journey
Excellent! Congrats on the great BMB news! That is really great.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: My mini-allo transplant journey
Day 57!
I saw the cardiologist yesterday for follow up after my "crisis" around Day 28. They reassured me that it was not uncommon after chemo and an allo transplant. They increased my Lasix dose since I still have some swelling in my feet; increased the beta blocker since my heart rate is still too high; and plan to add an ACE inhibitor in two weeks if my kidney function stays in the healthy range.
I will have an echo mid July to see if my ejection fraction ha gone back to normal. I asked if any of this could be the result of having amyloidosis, and they said just as likely not as possible – that when you have amyloid, you have it, but the heart acts differently, so probably not the case for me.
My blood numbers have been stable, so I am now just doing labs twice a week and seeing the doctor once a week. I go again tomorrow. My biggest complaint right now is sleep difficulty, which I am sure is the prednisone. I will be done tapering off that at the end of this month.
I saw the cardiologist yesterday for follow up after my "crisis" around Day 28. They reassured me that it was not uncommon after chemo and an allo transplant. They increased my Lasix dose since I still have some swelling in my feet; increased the beta blocker since my heart rate is still too high; and plan to add an ACE inhibitor in two weeks if my kidney function stays in the healthy range.
I will have an echo mid July to see if my ejection fraction ha gone back to normal. I asked if any of this could be the result of having amyloidosis, and they said just as likely not as possible – that when you have amyloid, you have it, but the heart acts differently, so probably not the case for me.
My blood numbers have been stable, so I am now just doing labs twice a week and seeing the doctor once a week. I go again tomorrow. My biggest complaint right now is sleep difficulty, which I am sure is the prednisone. I will be done tapering off that at the end of this month.
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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,
Great to hear that things sound like they are improving.
Just curious, do your doctors have you taking vitamin D? I had mentioned in old posts that my doctor recommended I take vitamin D and some studies were available that showed vitamin D had immune modulating effects. Check out this new study from the EHA meeting showing how much less chronic GVHD patients who used vitamin D had as opposed to those that did not:
LDG = low dose group (1000 IU daily)
HDG = high dose group (5000 IU daily)
CG = control group (no vitamin D)
Vitamin D definitely has effects on the immune system.
Mark
Great to hear that things sound like they are improving.
Just curious, do your doctors have you taking vitamin D? I had mentioned in old posts that my doctor recommended I take vitamin D and some studies were available that showed vitamin D had immune modulating effects. Check out this new study from the EHA meeting showing how much less chronic GVHD patients who used vitamin D had as opposed to those that did not:
By contrast, a significantly lower cumulative incidence of chronic GVHD (cGVHD) at 1 year was observed in LDG and HDG as compared to patients who did not receive VitD (33.7%, 25.9% and 66.7% for LDG, HDG and CG, respectively; p=0.04) (Figure 1). Multivariate analysis identified treatment with VitD as the only variable which significantly decreased the risk of cGVHD (p=0.03) (for LDG [HR=0.33, (95% CI=0.13-0.81), p=0.01] and for HDG [HR=0.42, (95% CI=0.16-1.1), p=0.07].
LDG = low dose group (1000 IU daily)
HDG = high dose group (5000 IU daily)
CG = control group (no vitamin D)
Vitamin D definitely has effects on the immune system.
Mark
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Mark11
Re: My mini-allo transplant journey
Thanks Mark!
I am taking an extra 1000 mg of vitamin D as well as a multivitamin. I have taken vitamin D long before multiple myeloma came into play and believe strongly in its importance. I hope it is also helping with the chances of avoiding cGVHD. I have not had nausea for several weeks and have no other signs at this point of GVHD. I know it can arise any time, but I am believing that I won't get it
I am taking an extra 1000 mg of vitamin D as well as a multivitamin. I have taken vitamin D long before multiple myeloma came into play and believe strongly in its importance. I hope it is also helping with the chances of avoiding cGVHD. I have not had nausea for several weeks and have no other signs at this point of GVHD. I know it can arise any time, but I am believing that I won't get it
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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
That is great to hear about the progress. Sounds like your brother's immune system is doing the job! Keep us updated as great news like this is great to read.
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Mark11
Re: My mini-allo transplant journey
No news is good news!
Today is Day 70, and I have made some great progress. I definitely feel stronger, certainly not to pre-myeloma levels, but better than two weeks ago. I still need a whole blood transfusion every 2-3 weeks because my hematocrit will drop to 25 or lower. My white counts remains in the low 2s but others are pretty normal. I continue on magnesium daily to counteract the cyclosporine, but I am able to do that at home with a pump, so it's not too much of a hassle.
Starting at Day 80, they will begin my "exit testing," which includes pretty much everything. I don't know what imaging is planned. SCCA prefers the MRI of the bone marrow, which my insurance does not cover, so I will let you know when I know.
From the end of month 3 through the 12-month mark is when chronic GVHD typically pops up. I will be on the lookout for it, but am hopeful that, if I do get it, it is easily manageable.
Cindy
Today is Day 70, and I have made some great progress. I definitely feel stronger, certainly not to pre-myeloma levels, but better than two weeks ago. I still need a whole blood transfusion every 2-3 weeks because my hematocrit will drop to 25 or lower. My white counts remains in the low 2s but others are pretty normal. I continue on magnesium daily to counteract the cyclosporine, but I am able to do that at home with a pump, so it's not too much of a hassle.
Starting at Day 80, they will begin my "exit testing," which includes pretty much everything. I don't know what imaging is planned. SCCA prefers the MRI of the bone marrow, which my insurance does not cover, so I will let you know when I know.
From the end of month 3 through the 12-month mark is when chronic GVHD typically pops up. I will be on the lookout for it, but am hopeful that, if I do get it, it is easily manageable.
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
Cindy:
Thank you very much for the update. Your postings have been very informative and educational regarding the mini-allo experience. Best of luck for your continued recovery!!
Thank you very much for the update. Your postings have been very informative and educational regarding the mini-allo experience. Best of luck for your continued recovery!!
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JPC - Name: JPC
Re: My mini-allo transplant journey
Excellent news!! Let's hope things go smooth from here on out. Hopefully the battle with myeloma is coming to an end.
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Mark11
Re: My mini-allo transplant journey
It's day 81 and I have been in the hospital for two days with a high fever of unknown origin. This morning it is finally down with three antibiotics. Very frustrating as I had been doing so well. Hopefully it will stay down with the switch to oral antibiotics and won't impact my return to home from Seattle, which is scheduled for the 23rd.
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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
Bummer news that you are back in the hospital, Cindy, especially on the 4th of July. I hope that the antibiotics work for you and that you can make it back home soon.
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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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