[Janice Sheppard]

Thanks michael. I’m sorry you’re having so much trouble. I’ve seen a dermatologist and its treated but is spreading. I dont have any infections though. I’m just wondering if other people have experienced this, I’ve never had a problem with these skin conditions until now.

[Janice Sheppard]

My appointment was yesterday. The doctor does feel that this is an autoimmune problem, possibly chronic aplastic anemia. not congenital though, i have been tested up the wazoo for genetic reasons, all negative. he thinks maybe a virus did it. he did not suggest taking a steroid at this point. interestingly, in the last month i was started on clobetasol shampoo and hydrocortisone for my face and scalp after what is thought to be an allergic reaction (i don’t think it is allergic, i think it is autoimmune, but i have to go through the process). anyway, my neutrophil count was 3 x higher than it was on december 11 (0.43 to 1.2 – higher than in the last at least 2 years. i asked if it was possible the topical steroids were responsible for that. the feeling was that there isn’t enough absorbed topically to make an impact, but they couldn’t say for sure. maybe a coincidence. honestly, i think it did make a difference and is the reason for the improvement. thanks for your input david.

[Janice Sheppard]

David, thanks for your reply, i don’t remember seeing it before. i’m going to mention this to dr. steensma when i see him on friday. i saw an immunologist and she did an autoimmune work up which was negative and she seems pretty much done with me. the hematologist had me matched for a bone marrow transplant – if and when i ever need one – so in his opinion i need a hematologist.

• This reply was modified 5 years, 3 months ago by Janice Sheppard.

[Janice Sheppard]

i had an autoimmune workup that was completely negative. i have, however, developed a case of eczema and just read that it can be a complication of severe neutropenia. my last neutrophil count was 0.43. why don’t doctors know this, or at least say so? the immunologist just shrugged and didn’t explain it but said it’s an immunity issue. the dermatologist said nothing about it, but knows my history. i don’t know if they are sparing me from information that they think will worry me, or just don’t know wtf is happening, but i want my doctor to be open and frank with me period. i’m an RN and i research like a fiend when something presents itself. i’m seeing Dr. Steensma at Dana Barber in Boston on Friday and will have more blood work done. i hope he will get on the same page with me. i hate worrying about this all the time, it’s like it’s the corner stone of everything i do.

[Janice Sheppard]

i’ve had 4 bone marrow biopsies, none of them with any sort of sedation of medication. i don’t remember the first 2 being traumatic, but that was a very long time ago. i had one done by the hematologist 10 years ago and he crucified me, it was an absolute nightmare. the last one was done by a nurse practitioner that does all the bone marrow biopsies in the office and she did a FANTASTIC job. i was told ahead of time that her patient satisfaction rates are excellent. i sobbed from relief after it was done. so, i guess my recommendation would be to ask who’s doing it and what their patients say about their experience.

[Janice Sheppard]

i’ve developed itchiness out of nowhere kind of everywhere, starting on my face, in december, accompanied by small bumps on my belly, arms, face. face is the itchiest, then scalp, then my body. finally saw dermatologist on january 3 who is calling bumps folliculitis (i have no hair on my belly – she asked me if i sweat), and the rest of it an allergic reaction. i hope that’s all it is. i have clobetasol shampoo, and hydrocortisone ointment for my face, but can’t use that stuff forever. i don’t think anyone so far thinks its MDS related, but neut count was 0.43 in november. i looked up grovers disease and the bumps do look like that, though a much milder presentation.

• This reply was modified 5 years, 3 months ago by Janice Sheppard.

[Janice Sheppard]

My BMB states reactive process and not MDS (doesn’t meet WHO diagnostic criteria). last neutrophil count was 0.43. I would love it if the offending agent could be eliminated and recover, but they have no idea what is causing this. I’m going to Dana Farber next month for a second opinion.

[Janice Sheppard]

Someone finally called me back today and I see Dr. Steensma in a month. I live on the northshore so its convenient for me. Re transplant, I’ve known 2 people in the last year to die after a transplant, so honestly who would look forward to that. One of them for sure had GVHD, the other had return of disease. I have matches, but the prospect of GVHD doesn’t appeal to me at all. I’m 52 now. Who knows when I’ll need one. Maybe I’ll age out like you. Best case scenario I guess. No one so far can tell me why this is happening. I’ve had hypoplastic macrocytic anemia for at least 25 years, trisomy 8 for at least 10 years. Now I have severe neutropenia. But my BM results show that I dont meet the WHO diagnostic criteria for mds. Suggests reactive process of some kind. Makes me wonder, if they knew what that was and treated it, would that fix it. In a perfect world….

[Janice Sheppard]

My doc is at MGH north in Danvers. I am waiting to hear back from the new patient coordinator – I had to call a second time. So far I am not impressed. The first time I called they took down all my info to give someone and then gave me the number to call in case i didnt hear back. Today I called that number because I hadn’t heard back. it was the Dana Farber pharmacy number.
And I was also not in the system for a call back. I was assured today that I am now. I still havent gotten a call from the coordinator.

I didnt know there are satellites. I’ll have to look into that. I’ll go wherever the right doctor is. Are they telling you bone marrow transplant donna? Have you been matched yet? I have been matched. I dont need one at this point, but they expect i will eventually. Km hoping theyre wrong.

[Janice Sheppard]

Hi Donna. Thanks for your reply. Yes I live north of Boston and see a doctor at MGH north. When I look at the centers of excellence on this website I don’t see MGH listed, but I guess that doesn’t mean they aren’t excellent. I’ve called Dana Farber and I’m waiting to hear from the new patient coordinator. My situation is on the ambiguous side. My bone marrow biopsy suggests a reactive process vs MDS. My doctor is siding with MDS. I’d like to explore reactive process.

[Janice Sheppard]

hard to know what everything means until you get all your results back. they may want to do a bone marrow biopsy. i know you’re worried and anxious, i completely understand. hang in there for 2 more days. let me know how you do <3

[Janice Sheppard]

your neutrophils are quite high. have you had a bone marrow biopsy yet?

[Janice Sheppard]

Angela, I am a patient, but i’m also a nurse. not an oncology nurse so keep that in mind. did you get normal ranges with your results? what is your total WBC count? What did your doctor tell you?

[Janice Sheppard]

can you post numbers? it will be difficult for anyone to interpret without numbers.

[Janice Sheppard]

also, i am in the boston area so a center of excellence is close. the doctor i see is with MGH, but i think the center of excellence is dana farber, which is on the MGH campus. it’s a little confusing, i think it’s part of the same network. anyway, my doctor’s name doesn’t come up on the dana farber search, and the transplant specialist’s name doesn’t either. does it make sense to access a COE when it’s kind of the same hospital? i don’t want to waste anyone’s time.

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