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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.
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Re: My mini-allo transplant journey

by Cheryl G on Sun May 24, 2015 8:40 am

It's so good to hear from you, Cindy. I've been thinking about you a lot lately, hoping you are doing well. I am glad to hear that you seem to be regaining some strength, but I'm really sorry for all that you've been through the past few weeks.

I really hope that the manage to tweak your immunosuppressants so that you get just the right balance between the GVHD and the graft-versus-myeloma effect. I guess the doctors are having trouble finding the right balance, and that's been hard on you. But you've got an experienced team helping you, so I'm sure they will find a solution.

Good luck. We're all pulling for you and wishing you all the best. As Mark says -- lots and lots of positive energy rays are being sent your way! :)

Cheryl G
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Re: My mini-allo transplant journey

by Mark11 on Mon May 25, 2015 2:47 pm

I checked in today to see if you had updated. Hoping to hear about more improvement in the next update!

Mark11
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Re: My mini-allo transplant journey

by CindyBrown on Sat May 30, 2015 4:14 pm

Day 46

I know I haven't posted in a few days. Things have been mostly the same, with constant changes to doses of anti-rejection drugs as my levels are not stabilizing easily. I still feel jittery most of the time, which I think is the steroid and the cyclosporine. I am managing to walk at least a mile a day. I am slow but getting it done. I have some days where I feel okay and others where it is definitely more of a struggle to get through. Today is one of the tougher days. The doctors say the process is going as they would expect, so I am doing my best to be patient.

One of my biggest frustrations still is the inability to focus on written words. I love to read and I am limited to audio books and podcasts. Visual changes apparently are common. Physically, I am getting adjusted to the moon face that comes with the high-dose steroid and the excess facial hair (I am going to have to get a shaving lesson from my dad).

I remain optimistic that I will not need maintenance after this process is over and I will be disease free. I have a BMB on Tuesday which will give me an idea of existing disease burden. I also meet with cardiology on the 9th to follow up on the CHF I had early on.

Thanks for the support!

Cindy

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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Re: My mini-allo transplant journey

by JimNY on Sat May 30, 2015 7:10 pm

Hi Cindy,

Was really glad to see your posting when I checked in this evening. I hated to read about some of the struggles you've been having, but I'm also impressed with the progress you're making despite the hurdles you've faced.

There's something else I thought I'd mention. I know we only get glimpses of how you're feeling through your postings here in the forum. But, from what I've seen, you've been holding up incredibly well, emotionally, given the ups and downs you've been through since the transplant. I don't know how you do it. I'm not convinced I could.

In any case, lots and lots of good luck for the BMB on Tuesday. I hope you get great results.

JimNY
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Re: My mini-allo transplant journey

by Nancy Shamanna on Sat May 30, 2015 7:12 pm

Thanks for posting in, Cindy! Good to know that you are walking 1 mile/day (1.6 km). That's lots more than what many well people do! Hope all goes well with your treatments and that you are on the mend soon.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009
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Re: My mini-allo transplant journey

by Mike F on Sat May 30, 2015 9:31 pm

Cindy - I like hearing that the doctors believe that things are going as expected. As difficult as it is now, that would indicate that they expect things to get better. Also, I'm with Nancy on your walking. A mile a day sounds pretty impressive, all things considered.

Best wishes!!

Mike F
Name: Mike F
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 18, 2012
Age at diagnosis: 53
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Re: My mini-allo transplant journey

by Mark11 on Sun May 31, 2015 6:47 pm

That is great that you are starting to walk daily. Hopefully they will be able to cut back on the anti-rejection meds and steroids. I was jittery on the anti rejection med alone so I could imagine how it is with the added steroids.

Best of luck with the BMB! You deserve excellent results.

Mark11
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Re: My mini-allo transplant journey

by CindyBrown on Thu Jun 04, 2015 4:55 pm

Day 51

The preliminary BMB results show ZERO myeloma, so I am on my way. Yesterday I had to have a transfusion due to a hematocrit of 23, but today it is 29 and I am feeling better.

We are going to have at least 5 days of summer now in Seattle, so my walks are getting to closer to the 3 mile mark.

Still lots of work trying to get the cyclosporine levels to normalize, but my kidney function is greatly improved.

I see cardiology on Tuesday to follow up on the CHF, but I am showing no signs of what looks like permanent damage.

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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Re: My mini-allo transplant journey

by JPC on Thu Jun 04, 2015 5:07 pm

Cindy:

For the BMB: CONGRATULATIONS! Hopefully the rest of the issues start falling into place! Good luck!

JPC
Name: JPC
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Re: My mini-allo transplant journey

by Mark11 on Thu Jun 04, 2015 6:29 pm

Awesome news!! Reading this post makes my day.

Mark11
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