Hi Lea

I have heard of several that got shingles after BMT. Hopefully his case will stay mild.

Hugs

Karen

Hi again Lea. I got shingles last July, about 19 months post transplant. Shortly before then my doctor discontinued my anti viral medication, that's probably why. I've since gone back on it. While the shingles sores cleared up in a few weeks, the shingles pain has persisted for me, I still take gabapentin for relief at night.

Whenever I've gotten a cough it's taken me forever to get over it. Tony's numbers look great, much better than mine at 13 months. It appears he's doing very well. Good luck.

Lou

Thanks Lou, I should've mentioned in my original post that his doctor wanted him on antivirals for at least the first year which would've been through July but I found out that Tony just stopped taking them in May (on his own accord) as he confessed to me and the doctor last month, simply stated she said today, that could be why we are. Hoping his case stays mild, no pain yet, praying no phn pain after this.
The rash is the only symptom so far, and is in a very inconspicuous rear end spot.
They're treating him w oral valy(3G) and luckily since we had some on hand when I discovered the rash (not yet knowing what it was)
two nights ago he decided to take the correct dose of treatment Valy

Lea,

In so sorry to hear tony is dealing with shingles. It sends to be a common theme post sct. Isn't there a vaccine for shingles? Along with lou, I think cliff had dealt with this as well. Praying for minimum symptoms for tony.

Blessings
Julie

I did not get shingles and I would strongly recommend for everyone to get the vaccine -- even though they might not give it to those who are younger -- I think it was age 60 or something like that. I had a close friend who go it and it was really bad (not an AML or chemo patient) -- but that convinced me to get the vaccine, and my Onc gave me permission I think it was about 3 months after chemo -- that would be back over five years now. Apparently there are several things that can trigger it that go along with AML and chemo -- so all survivors need to get the vaccine ASAP -- it is given at the drug stores in Alabama.

Once it gets you about all you can do is tough it out and take pain pills. I feel for Tony and will pray for him -- it would really be great if it stays a light case. -- daveB

Omg. I have had shingles twice. First time was not bad. Second lasted 6 months with phn. I pray Tony has an easy case.

Lou
Were u treated w Oral antiviral pills or were you admitted for IV? Doc says if it spreads to more areas he needs to be admitted for IV antiviral therapy! How long did rash last? it seems to be getting worse before it gets better I think :(
Praying he can stay out of there, he's so stressed now. It's his birthday tomorrow and pretty bummed.
Dave
I wish he could've but Transplant patients can't get the vaccines unfortunately.

No, Lea I never was admitted for IV antivirals. I really don't remember what the treatment was besides painkillers and some creams for the rash. I think they put me back on valycyclovir but I forget the dosage. Now I take a 1 gram pill once daily. I actually had a fever for a week or so, usually not a symptom. I had the rash on the back of my neck, back of my head, over and behind my ear. But most all of it was under my hair so the extent of it was hard to tell. And it may get worse before it gets better, but it will get better. Tell Tony he has been through worse than this, it will be OK. And Happy Birthday!!!

His mild occasional cough has gotten worse over the course of weekend. Doctors thinks it's sinus related (izzy just had 3 week sinus infection)so as a precaution they put Tony on a Z pack when she got sick but it still persisted and so we assume that it's viral not bacterial as antibiotic did nothing. now it seems like symptoms are worsening
It's tight and "barking" like when child has croup, keeping us both up all night, mostly all coughing spells at night and right when he wakes.
I've read that shingles can spread to lungs and into pneumonia in immuncomprimised pts.
It if the shingles are mild, this is prob not likely, right????

Lea, did he just go off the acylovr. (Sp sorry). They warned me that I may get shingles after going off it but haven't so far. As you know I was very sick with cough and flu symptoms and it took me at least 6 weeks to get rid of it. With similar numbers to Tony's. Sorry if someone already covered this, didn't read the whole thing. Glad you guys are doing well otherwise
Dave J

Dave- yes, he did just go off (against Doctors recommendations :/ ) I actually just found out that he decided to stop taking the acyclovir on his own in May. She wanted him on anti virals thru July at least to protect him from shingles!
He's so damn stubborn, but learned a hard lesson this time. anyways, his case is mild compared to some of the others who have suffered from post transplant shingles. I hope you avoid it as you've been they a lot w the flu bout.
We're not outta the woods yet though. His cough is really mostly at night (sparked by lying down) and so hoping it's nothing more than viral/sinus! Time will tell. Had his O2 stats checked, all good so no worry on the lungs just yet
I'm glad you finally kicked the flu though!

Oh Dave, I also Should mention try to keep stress down! So, besides being a bit run down and stressed at work again, last week his mom had to have a lung biopsy due to a mass detected and moderate uptake on a PET scan, this stressed Tony out terribly, as he is very close w his parents and his father was recently diagnosed w a rare lymphoma and his mother is a breast 30+ year cancer survivor abd his 2 aunts and one uncle all died within the last few months very quickly. It's been a dark time for his family and I think he's feeling it more and more.
All things out of our control of course, but the constant sickness and medical worry weighs heavily on our minds.
Not trying to be a downer but I do this stress plays a role w shingles sometimes

Dang, when it rains it pours it seems (literally up here lately), I'm sorry to hear of his dads Lymphoma, moms potential problems, and aunt and uncles passing. And of his shingles. The stress would be a big factor in getting them I think. I ride away the stress on my bicycle, makes me feel good and young. I was always (still am) to scared to do anything but exactly what they told me to do as far as medications. He knows better than that.

They did all kinds of testing on my lungs when I was having the cough including a couple of ct scans, everything was good. He'll get through it, probably just going to take some time. Prayers sent your guys way.

DaveJ