Shingles, 70, M, 11, unmutated, DX Jan of 16, W&W

[Songster]

Have had shingles for 8 days, started on Valacyclovir just yesterday. Until this misery, I have been very active and had no infections for more than 7 years. I have slightly enlarged spleen and lymph nodes at stage 1. When I when for a colonoscopy, the Dr. examining me said my liver was enlarged (had not been in Feb of this year with I had a scan). So now i have had another scan, results not yet back. I know that the norm is three weeks or so for this to run its course, with the potential for weeks longer and then the lingering neuralgia. I do have a Cll specialist at Siteman Cancer Center in St. Louis scheduled to see her next month but have good communication with her. I don't have specific questions but welcome questions/comments.

[neurodervish]

Hey Songster, So sorry you're going through this. It sounds terrible.

Glad to hear that you have a CLL specialist, though. The more I read on this forum, the more I recognize how essential that is to our health outcomes.

Did you happen to see CLLCanada's post from yesterday? healthunlocked.com/cllsuppo... about 11q and Ibrutinib? It was an interesting read.

I wish I had words of wisdom or solace to offer. Please know that we're all here if you need to vent. (I'm playing my copy of Billie Holiday singing St. Louis Blues in your honor.)

Hang in there!

[Songster in reply to neurodervish]

I seem to have reached the point where no more blisters are breaking out, just dealing with the healing process. Yes I read the post regarding ibr and 11q, that is good news for sure. Having added enlarged liver to my symptoms inches me closer to need treatment.

[Seven6]

Hi Songster

Sounds as though you are in a low place with lots happening. I had ophthalmic shingles in June, it is miserable, I was treated with Acyclovir for 14 days, once I started the antiviral the blisters stopped spreading but the neuralgia pain was pretty bad. I had to attend eye casualty at my local clinic as the blisters were making my left eye swell. It had not spread behind my eye, so this was good, and had to return to eye casualty after 7 days as a follow up. The Doctor there said that hopefully once the blisters have healed the neuralgia would ease. This did happen and I felt much better after about three weeks, the blistering on my forehead is still visible but not painful, just a slight twinge now and again.

I write this as a positive outcome to shingles.

I am stage A cll, mostly healthy and in w & w.

Seven6

[Songster in reply to Seven6]

I have a friend who had shingles involving her eyes. That is scary, glad you have made a good recovery. My shingles are one side of m buttocks so sitting is my worst enemy. I guess the neuralgia is the unknown factor. Talked with a friend whose SIL has had pain going on four years.

[Seven6 in reply to Songster]

Thanks for your reply. It sounds challenging and I hope you can sit down in comfort before too long. I was concerned about the long term neuralgia and wanted to send an encouraging message that this may go away once the blisters heal. Take care of yourself and hope you soon feel better.

Seven6