Just when you think you are out of the woods, it turns out they were full of poison oak! In the last month, as my immune system recovers from 2+ years of suppression, it decides to go on a rampage of a sort, and I am one giant itch as the WBCs go rampaging from spot to spot. One big constant allergic reaction to nothing! This seems to be related to circulation, as heat really gets it going. I step out of a hot shower with rashes everywhere, so now I am taking cold showers. Benadryl is keeping the whole thing under control, keeping it bearable, and the doc thinks it will subside in some time, but so does breathing. The only other person I know that went through this treatment is still having the itchies, and she ended chemo months ahead of me, so I have that to look forward to. It could be a long hot itchy summer.
The other night my scrotum was on fire with the itch, and I was wondering if I had mentally blocked some wild party with hookers in Reno, but it was just the crazy WBCs going after a hot spot. I actually considered cutting off the whole mess, but then my head was itchy too, and my ears, and my chest, so I can't chop off everything that is itching. I had to bust out a firehose of 2.5% hydrocortisone cream and put it out; back to the damn steroids!
Just to make things well-rounded, the acid reflux thing is back and I have to cut back on my favorite drug, coffee. Jeez. So, the new drugs are Benadryl and Protonix, and Gaviscon when things are really kicking. Right now I feel like something is trying to break out of my rib cage. Things seem to get going about 2 hours after a meal, and I am right on cue. But, my golf game is coming around, and when I am outside the itch is gone, probably because of the cool weather we are having around here. Mac, I played Dayton Valley CC (Nicklaus design) with the boss last week, shot an 84 from the blues. 40 acres of water on the course, and at least 100 sand traps, so I was pretty damn pleased.
Young John is home from school, so the house is a little different. He is running with a game idea I had a few years ago, so I am going to have to help him with it, and maybe we can both avoid real jobs if it works. Stay tuned.
Everything else is pretty normal. School is coming to a close for Mike and Dana, and we need to get some vacation time planned, I've worked over a year with 3 days off. I will probably keep posting until the itch dies so my readers with leukemia that read this can see how it might fare for them. The key to scratching out a living is living, not the scratching.
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I had the same thing happen to me, When chemo ended in feb19th I noticed that I was getting some rashes, especially facial flushing after a cup of tea, or getting out of the shower. Black tea and or vitd caused extreame facial flushing. Resveratrol the red wine pill caused forearm rashes to apear. I stopped taking that for now. Protonix,nexium xtc all caused facial redness. I think taking the supplements so soon after chemo may have been the cause of the rashes.
ReplyDeleteJust had colostomy reversal surgery, more time in the hospital more testS, more pain ,now I am going to be laid up for 6 more weeks it is a good thing that I am worth tens of millions of dollars LOL.
At first I thought my water had to much chlorine in it and that was resposible for the rash on my face and all the spots were I had shingles a year ago.When I got out of the shower the shingle spots all were bright read and would last for hours. I added a chlourine filter in the shower but it did not help much. I have not had to use steroids except on my forearms when the rash was getting out of hand. My plan is after a few months after the surgery to try the resveratrol again and vit d. Vit d was in the news again this weekend with a study showing a 60 to 73% reduction in cancers. A few other studies have supported vit d's powerful anti cancer properties. Type in a Pub Med Search engine the terms resveratrol leukemia and you will come up with close to 600 abstracts on the effects of resveratrol on leukemia. It seems promising as a preventative.
ReplyDeleteJohn Man,
ReplyDeleteI have been absent from the blog for some time.
So sorry about the itch thing but very glad you're doing well.
I hope you had a great summer with the family. It has been HOT HOT HOT in Bama, especially throughout the month of August. However, we have simply fabulous weather now - and so happy to have it.
Good to hear you got to play that golf course. You're shooting much better scores than I am at the moment. I think this old body is going through some changes that do not allow it to turn like it used to. Unfortunately, the mind does not connect with what the body doesn't do.
I'll do a better job at keeping up with the blog.
Stay well my friend and give my regards to the family.
Mac
I came across your blog as i was researching into leukemia as after having visited my doctor for an unrelated matter he has forewarned me following my blood test and a physical that I may have leukemia. If this is the case then no doubt it's early days for me. Any fear I may have is tempered by the fact that a very good friend's son has had his tumour diagnosed at Harvard as an agressive malignant triton tumour for which the prognosis is not good (he's only 21!). It was sent to Boston originally and then to Harvard from Australia.
ReplyDeleteI have enjoyed reading your blog and the humour you have put into it. My friends have difficulty understanding my calmness and injection of humour into what could be a serious health problem however at this stage my philosophy is that I cannot change what is/maybe.
I currently live in NZ although I am an Aussie and I jokingly say it's one hell of a way to get back home for Xmas.
I sicerely hope that you remain well and that the reason for the final entry on May 31 was to wind up your blog.
Regards
Nick
evhgui@xtra.co.nz
I am so sorry for your loss..i was reserching on line to see if i could find a help for my 4 yr olds iching after leukemia and came across this site. My heart breaks for you all..Alexis has the same thing he had..Again i'm so sorry!!
ReplyDeleteI'm sending you and Alexis all my best. Thank you for your sentiments and I hope you will find this blog helpful. John would be please that so many are still reading about his experience.
DeleteLove,
Dana