Anyone seen a rash or open sores from neupogen treatment

[galway]

Anyone seen a rash or open sores from neupogen treatment.

My father has been on neupogen but he is currently stopped it .Hopefully to try a course of Vidaza treatment in New Year.In the last week a rash has appeared over his body mainly head,neck,back and chest with open sores.I wondered has anyone seen this before ?Also what, if any treatment were they give for such a rash.

[marlene]

The first thing that comes to mind is shingles. My husband had them and the rash ran from his spine to around to his chest. He only had one nerve pathway affected. Shingles are usually painful. It first started with some discomfort, then a rash appeared and then the blisters. The doc put him on valtrex for about three weeks.

[KWJ]

Also sounds like Sweets Syndrome. My dad had this, took a week to diagnose. It is a secondary issue that you can get with MDS. It is treated with prednisone. My dad also got it after using nuepogen. His doc discontinued use after the outbreak of sweets.

[campbell]

My husband had sores all over his back legs that looked almost like cigarette burns. He was miserable with these for several years and the Dr’s never dx it. He had surgery and took blood and they just went away. He was dx with MDS/no chrome defect. Is this a pre MDS symptom?? The more I read I think it is.

[galway]

Thank you so much for all the replies.Sweets Syndrome sounds most likely one.But I will let you know what the specialists come back with.

[galway]

I had not realised that Sweets Syndrome was a sign of MDS progression to AML.This is what the doctors are saying at the moment.But they still have not come back with biposy result, so they are not diagnosing yet.Is this what anyone else had experienced ?

[KWJ]

When my Dad had Sweets – he was not yet to AML. But we did feel like the nuepogen shots accelerated it. Also after the Sweets his blasts went up. He was still at 12% several months after he recovered from Sweets. He was at 5% before. Then in Nov he was over 20%. Within a 2 month window he went from 12% to over 20% and AML.

I am sorry for your dad and you. Vidaza did work for my Dad in the beginning. Hopefully it willwork for yours.

[sugarwhale]

This may not even be relevant, but my mom developed an itchy rash from PROCRIT. We later found that, although my mom was not allergic to the Procrit, she WAS allergic to the PRESERVATIVE used in it. At the time they simply switched her to epogen, which she tolerated fine. She needs nothing now–just revlimid. I’m thinking that if someone can be allergic to the preservative in Procrit, couldn’t they perhaps be allergic to the preservative in neupogen? Just a thought!

[galway]

Just thought I’d update you on the rash diagnosis we got.Unfortunately as expected the rash was Sweets and did indicate the progression from MDS > AML.However on a positive note he has started chemo treatment Daunorucibin and Clofarabine combination.Which in UK NCRI reports has shown positive results for putting people into remission.His rash is clearing up and he looks better than he has in months.But he is on alot of antibiotics and steroids so possibly thats the reason.But he has completed his first treatment and has had a few minor side effects so will just have to wait and see.

[KWJ]

Glad he was able to do the chemo! Good luck to you guys.

[galway]

I have been talking to a woman (now 64) who has gone into remission.She had success with chemo followed by stem cell transplant(at age 54).It appears to be one course of treatment that worked for her. in any case.

KWJ your Dad is so young only 64.I would wonder why he is not eligible for chemo treatment and whether getting opinions of other consultants etc might help.I am sure you are trying all this anyhow.But on a positive note – there does seem to be so much research going on.Hopefully they can find some treatment suitable for him asap.

[KWJ]

His health is not good enough for the chemo induction. He was set up for a mini SCT in Nov but then they found he had progressed to AML. He was at the Hutch , a well known cancer center. They sent him home because they said there was nothing more they could do. I agree it is strange because he was approved to do the SCT but won’t make it through induction?? I guess his chances at the SCT were low too.

He is going to try Zarnestra, we are so hoping that helps. His white cells were at 39,000 but they put him on meds for that and now they are at 24,000. He was having a lot of bone pain.

I hope you Dad has better luck with the induction. My thoughts and prayers are with you guys.

[galway]

Hope the Zarnestra helps your Dad.Our thoughts and prayers are with you and your Dad.

[KWJ]

He finally started it Thursday. Took a month to get it all going. A month we really don’t have. He is really weak.

How is your Dad doing?

[galway]

Thank God they have started his treatment.I know everything seems to take an age.When you see your father so sick and weak, it is so frustrating.But I suppose you have to think positively that at least they are not rushing into treatments.

My Dad is doing ok.Some days better than others it is tough for him.He had a few side effects from drugs.But mostly he has experienced a very low white cell count and they were worried his line they give the drugs through was infected.But they have stopped the antiobiotics treatment now as there does not seem to be infection ,so that is good news.

Really time will tell ,they took a bone marrow biopsy yesterday.So we are hoping those results will be positive – post treatment.His rash went completely when on the chemo so thats a good sign.We are hoping he may get to come out of hospital for a week or so before starting another round of treatment.As he does need the break and to get some good old home cooking ,as he has lost alot of weight.

As always our prayers and thoughts are with you both.Try to stay as positive as you can it seems to help my Dad if he is surrounded by positivity.
He has even cracked a smile recently which is good.

[Author]

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