Hang in there, it's all part of the ride, went through the same skin issues and now its gone completely, and the similar stomach problems, (but mine was gvhd) and that is nearly gone now also. I know I sound like a broken record, hard exercise for you too, will do a world of good for you. I know it's hard when you are taking care of family, but if you can even squeeze a 1/2 hour in it would be good. Praying everyday for you guys.
davej

Lea

My sister get a similar rash when she gets too much sun and the docs think it is due to her chemo so maybe Tony's is a residual thing from his chemo. Hers looks like a heat rash also. It took a little bit for hers to show up. Didn't start immediately, probably about her third consolidation round. She has said that if she continue to get sun, it spreads and becomes painful.

Dave and Debbie thank you for your replies and positivity
Tony has no itching or irritation or pain, just a lot of tiny lil bumps.
Guessing they'll biopsy hims skin this Wednesday as well as the bone marrow biopsy.
His face is pretty red too, just chin, nose and cheeks, like a sunburn but he's covered and slathered up in SPF if he goes outside
I broke the code and looked up stuff online:( bad idea, sorry Cliff!!!!!

Dear Lea,

My husband Jimmy also had many rashes for several months after his BMT. His skin was very dry and looked red and bumpy especially on his chest and arms. The back of his neck looked like he had a bright sunburn. They did test him for GVHD but it came out negative, he was just very sensitive. Jimmy also had several moles on his back and a basal cell that was cut off a couple times that just kept growing back. Now 14 months post BMT his skin is nicer then its ever been all his moles (he had his whole life )have disappeared the basal cell black thing on his back is gone and his hair grew back on his head but not the rest of his body. Me and the kids just keep teasing him that since his donor was a female he is much prettier now.

Praying Tony is just another sensitive guy,

Margaret

Lea,

At least you are being honest. I appreciate that. GvHD of the skin is not uncommon after transplant. Nevertheless, and I am no dermatologist, I very much doubt that Tony has GvHD. With all the drugs that we take and the regrowth of cells that mediate all sorts of allergic reactions, it is sometimes just impossible to know. If Tony's doctors want him to have a skin biopsy, who am I to put in my two cents? If it were I, I would not have one at this juncture. The procedure is no big deal, however.

The bowel issues are to be expected. Remember, that all tissues that are rapidly dividing get hit by the chemotherapy. The bowel is just like the skin and hair follicles, it really takes a beating. That will resolve with time. Tony is so early in the process.

The leg cramps are also common after all of this. Ask about Tony's magnesium and calcium levels. These are two ions that need to be in the normal range to help avoid the cramping issues.

Now here is something to aspire to, instead of worrying:

Yesterday was my 3 year post-transplant visit to Sloan Kettering. I should have known that it was going to be a good day, because instead of taking 2.5 hours to drive the 38 miles and park (yes, that is not a typo), I zoomed there and was actually seen on time for my exam, blood work, cardiac echo, and pulmonary tests. My blood work was absolutely normal as were the other tests. I did not even see my transplant doctor, but rather a very nice Survivorship Nurse.
They do not want to see me back for SIX MONTHS, and I will probably try to stretch that. I used to hate going there even more than I do now, because I feel so good when all the people with the no hair, pallor, etc. see someone who looks healthy with all of my muscle back, with all of my hair and with a constant smile (please ask Tony how to get rid of my pot belly, something I managed to avoid for 60 years). Whenever I can (which is almost always, because I talk too much), I tell them that THIS is what they can look forward to. I am afraid that one of them might ask me if I am referring to my pot belly!! It feels so fantastic when I see them smile (under the mask, of course, but you can see their eyes crinkle).

I am wishing both of you good luck with the tests. You have nothing to worry about.

Cliff

Lea,

Praying fervently for great results today.

Blessings

Julie

Lea and Tony, I've been thinking of you both today and praying for a clean bmb.

Sal had a bit of a skin rash earlier on, mostly his arms and hands, which went away. He had a mild cream, but I think it went away on its own.

Cliff, great news on your 3 year appointment!

xoxo
Monique

I would get a rash on my legs after each round of chemo for treatment for AML (Dx Dec.7, 2012) that looked kind of like razor burn - each hair follicle was red but no irritation and not itchy. So, when it occurred again about a month or so after my BMT(April 2, 2013) I just told the nurses and docs that that happened every time after chemo and they didn't seem concerned. But when it soon covered my entire body except for my feet and head, they were alarmed, did a skin biopsy (simple procedure) and sure enough it was GVH and I was put on high dose steroids. Not fun at all, but I eventually tapered and am fine today, 18 months post BMT.

Margaret thank you for sharing, I like the analogy that Jimmy just sensitive (and prettier) now!!!!!

Cliff- so glad to hear the 3 year check up was so smooth!!!! We aspire for the same one day. I Love that you make the patients smile, of course you do!!!

Monique- thank you, always thinking of you and Sal, how are things going, is he off the immunosuppressive a yet?

Sogel-That sounds terrible, I'm glad you are doing better now! Tony handles the skin stuff really well, but I would be a total mess, I'm a picker, scratcher, itcher, yuck, i would be a mess.

Update- Wednesdays clinic visit was exhausting. The team saw Tonys rash, which under clinic Florescent lights was very visible, bumpy, red and angry looking. The entire team thought gvhd, sent him directly to Derm, the doc thought gvhd also so took 2 biopsies. He also had his 100ish day bone marrow (actually day 83) too so was quite the lab rat with multiple holes punched- poor guy.
Both biopsies came back today aroubd 6 pm. Prelim bone marrow morphology looks great, w all 3 hemeotopetic lineages looking good still waiting on chimerism and cytogenetics though
Blood counts
WBC 5.3
Heme 13.3
Platelet 124
ANC 3900
Skin biopsy came back (Derm path) inconclusive - possible drug rash, but Derm doc still thinks early gvhd -
They rx him a light steroid cream but the rash stated going down thurs morning before I even applied the cream, and much better by tonight after applying - so I guess we will see...

As of last week the dermatology results were inconclusive but they had Tony hold off taking his Bactrim to see if it was a reaction to that drug for with an inhaled version of it and he tolerated that fine the rash had subsided within a week with the use of a light steroid lotion
And then a few days ago after not using the steroid lotion for a day or two it started to come back very slightly and so our thoughts are it's def not a reaction to Bactrim since he hasn't had it for at least two full weeks now and that it probably is a very mild case of GVHD
We see his team again on Wednesday.
As long as the skin rash is very mild and does not get worse they will proceed with the preemptive DLI study we signed up for at the end of the month

Lea,

So glad it seems as though Tony can proceed with preemptive DLI.

Praying for all favorable test results

Julie