Hi Debbie,
I'm hoping and praying the pain will be controlled and Jo
Can be treated for the shingles. Jo has been through so much, I'm keeping you both in my prayers.
Hugs........Sandra

Debbie,

I am so sorry to read that Jo continues to suffer with yet another complication. She certainly has endured more than most. I continue to keep both of you in my prayers.

Blessings,
Julie

Well, they have now said it is not shingles. They are unsure what it is. It was much worse yesterday morning and the pain was even worse. They have admitted her to the hospital and the doctor has called in a dermatology doc and an infectious disease doc to take a look. She went willingly to the hospital yesterday without a fight so I know that she must be in a great deal of pain because she usually does everything she can to convince them to let her stay at home and try to treat whatever is going on. Please pray they find out exactly what it is soon and get it treated as quick as possible.

Debbie

Well, they have now decided that my sister has Sweet's Syndrome. I have to give a thank you to Lovemydad because when this popped up with my sister, they first thought shingles and then tests said it was not shingles and they were unsure of exactly what it was. I remembered reading her post about her dad's skin rash and told my sister to ask the doctor about Sweet's Syndrome. The doctor came in last night and told her he had been researching the syndrome and he is 99% sure that is what she has. They started her on really strong steroids last night and he said she should start feeling better within 24 hours. This site and the experience of others really can help and my sister said to give a big thank you to Lovemydad for making that post right when she needed it. Hope your dad is doing better. Our prayers are still with you and your family.

Debbie

Debbie
Happy they figured it out with the help of lovemydad and that Jo will be feeling better soon.

Karen

Hi Debbie,

How is Jo?

Blessings,
Julie

Hi Julie,

Jo, health wise, is doing good. They never definitely determined what the rash was that she had. The oncologist here in town was sure it was Sweet's but her doc at MDA sent her to a dermatologist there and he could not determine one way or the other if it was. Biopsy of it was done but was inconclusive (whatever that means.) It has put her chemo on hold for another 2 weeks. She is anxious to finally get through with them which was supposed to be January but will now be later due to close to 4 weeks with no treatment due to respiratory infection and then rash. She still has three more rounds to go.

She did lose a friend recently that she had made when she first started treatment at MDA who had gone through 2 transplants and he passed away about a month ago. It took a lot out of her with them having mentioned the possibility of transplant down the road for her. It was the first time she mentioned that if she relapsed, she didn't want to do anything else. I'm hoping it was just a really low point for her at that time. We try to keep her positive and pushing to get to the end of treatment.

Hope all is well with you and your family. I don't think too many really like this new format :(

Debbie

Debbie
Thank you for the update. Tell Jo to keep fighting and to never give in.

Glad to hear she is doing better.

Hugs
Karen

I'm really worried about my sister. Her rash had cleared up with the steroids but is now back again. She has not been able to have another round of chemo since the end of September. Her platelets were up to 220 but last week when she saw doc at MDA they had dropped to 179 and this week when she had them done they were down to 149. Since no chemo in the last 4 weeks, they should not be dropping! Right? Nurse at local oncologist's office is a little concerned but said it could be due to the rash that has returned. Anyone have platelets drop like this and was everything actually ok?

Debbie

Dearest Debbie,

You know I'm the queen of low platelets. I'm at 3 years of treatment and my platelets have never reached the normal range. Platelets are the most fickle of all. Any virus, infection can cause them to plummet. I focus more on ANC. I'M so sorry jo is struggling so much, so cruel.

Even more than counts, i rely on my PCR for inversion 16. Is jo being regular PCRS?

blessings
Joe

Sorry,

Julie

Hi Debbie. Like my good friend Julie, my platelets are notoriously fickle. About 9 months ago I had a series of blood tests that were consistently lower than I would have liked. My doctor was not worried, she also said there were many things that could affect counts in general and platelets in particular. She mentioned viruses, even a minor cold or sore throat could throw things off. In my case we think it was ordinary moderate alcohol consumption that caused the drop but it could have been any number of things. One thing that was positive and reassuring was that my whites were always solidly within range. I would look at that as well as the other usual suspects - hemoglobin, hemocrit, ANC. An across the board drop is more concerning but not necessarily a definitive indication of a problem either. Keep us informed. Good luck.

Lou

Thanks Lou for the encouragement. Jo's rash is clearing up with another round of steroids and they have decided to start another round of chemo now. Let's hope when she stops the steroids it doesn't return again. Her platelets have gone up so maybe the rash was causing them to drop after all.

Julie, Jo's PCR always says no minimal residule AML but the MDA doc says when they go all the way down to the chromosomes, it still shows persistent disease. Jo's body has never been able to handle the really strong chemo they wanted her to have so she has only gotten about half what they wanted her to have. That's why it's almost 3 years from diagnosis and she is still having chemo treatments. She will hit the 3 year mark in January. That's a long time of chemo treatments. Her body is breaking down. She needs gall bladder surgery and two shoulder surgeries. All of which the docs attribute to prolonged chemo. I'm not sure how much more she can stand. If these last few treatments don't do what they hope, I'm afraid she will need a transplant and I'm not sure she will be willing to do it. It scares me so much. She's had a very hard road and she has done it like a trooper but she is so tired of it all and there is nothing anybody can do to make it better for her.

Debbie :(

Well, they have determined that Jo does have Sweet's Syndrome. The rash kept coming back and the MDA dermatologist confirmed it now. They have told her that usually it is indicative of either a reaction to meds used to bring up white counts (which they ruled out with her because the one they use with her does not cause Sweet's) or a relapse of AML or cancer elsewhere in the body. Now she is having to have a mammogram, colonoscopy, pap smear, and bmb to check all those possibilities. Please pray that all comes back negative! BMB is this Wednesday and other tests to follow that procedure.

Debbie

Debbie

Hopefully all the tests will come back with good results. I will keep Jo in my prayers.

Hugs
Karen