a visit to The James :)

Monday was my 4 month check-up with my hematologist at The James. Hard to believe I've been going there 11 years.
My platelet count is up to a whopping 21k, I only have to get labs every two months now, and I don't need to visit him again until April (6 months). After 8 months on generic Cellcept, I have stabilized in the 11k-21k range. That is sufficient.

Perhaps some day UNICEF will start handing out Promacta like candy at Halloween and I can return to that treatment.
Meanwhile I get along just fine with the treatment I am able to pay for.

Life continues.


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Boo.....wish you could be back on Promacta! Are you feeling ok or achy and tired all the time?

Jack,

How are you feeling with the change?

Jeffrey

Seriously folks, it's all good! This was intended to be a celebratory post.

I am happy with 21k....it beats 11k, no real bleeding, a few bruises, a dot now and then...not really a big deal.
I'm back to getting labs only 6 times a year, going to The James twice a year, and I'm able to pay for it all. That is wonderful!
I can't think of anything to moan about. I always have my doctor's number on speed-dial if anything comes up.
As The Blues Magoos so aptly put it way back in 1966, "Life is just a cher-o-bowlies".
Or perhaps a James Brown reference may be more recognizable, "Yoowww, I feel Good!"...dada dada dada daaaa.

Promacta kept me in the 45k-55k range mostly. Generic Cellcept keeps me in the 11k-21k range. There really isn't that much difference between the ranges. I am personally fine with platelets in the teens and my hematologist is as well.

There are a couple of future possibilities which could be worrisome:
1. Cellcept could simply stop working. I went through that with Cyclosporin a few years ago.
2. A meteor might land on my head, just as I am being hit by a bus and struck by lightning. Hey, it could happen...........


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Jack,
Thanks for the encouraging update.
I love your upbeat attitude! I can just imagine you & Jeffrey doing a road trip together :silly:
Best wishes
mj

MJ,

We will need a driver! LOL I don't think Jack is too far from me! LOL Maybe we will show up at your house!

Jeffrey

Do you mean to say that this ISN'T a road trip? :ohmy:

If I may be so bold as to quote Robert Hunter, "What a long strange trip it's been"....(Truckin' / Grateful Dead).


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Jack, I agree with you! Even in the 11 to 21K range, I think you'll do just fine, especially with not much in the way of symptoms. It means you are stabilizing which is good! There are others on the forum within the same range, and they, too, are doing fine

Good luck to you,
Dee Dee

Glad to hear it went well. Enjoy!

Jack! What did I miss? I know I haven't been around much but what happened to Promacta? How come you aren't taking it anymore?

"I know I haven't been around much but what happened to Promacta? How come you aren't taking it anymore?"

You didn't miss much. The quick version: My wife lost her job in 2012. We switched back to my work's insurance. New insurance is crappy and has 'infinite-loop-hoops' for pre-approval of drugs like Promacta. Generic Cellcept is cheap and keeps me in the 11k-20k range with no approval hoops.
To keep ITP treatment from blowing the family budget, I have been taking generic CellCept and getting labs at LabCorp instead of The James. Now that I have labs back to 6 a year and doc visits back to 2 a year, it's only about $500 a year for everything (after insurance premiums).
I can once again afford to have ITP.
And I feel much better knowing I am not racking up thousands of dollars in medical bills.
My hematologist and The James staff have been exceedingly supportive in this endeavor.


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Jack,

I'm glad you don't have that horrible fatigue/achiness. For me that is the worst part of itp. I feel the way you feel about The James about Cleveland clinic. We are lucky to have great specialists in Ohio!

Jack!

Dare I ask? Are you a DEAD HEAD? Sweet! I was doing yoga tonight to the Hendrix "Are You Experienced" cd and then to Lovin Spoonful and then to Dave Clark 5. It was an a loud and really unthemed workout! Tomorrow will probably be Cream or Led Zepplin!

Jeffrey

>>>"I'm glad you don't have that horrible fatigue/achiness."

I don't? Would someone please tell my old body that.
Sure I have fatigue (between meds and ITP)....Although I think my aches are just part of existing for 6 decades.
I know I tend to repeat myself with one thought; That after several years of ITP, much of the symptoms and treatment side effects cease to be as big of a deal as they seemed to be in the beginning of the adventure. Welcome to the new normal.

>>>"Dare I ask? Are you a DEAD HEAD?"

Not sure I qualify as a Deadhead. I never actually followed them around. Although, I love the Dead's music...and Hunter is one of my all-time favorite song writers. The song 'Truckin' was one of my theme songs while I was traveling around for some years. That 'long strange trip' began with a one-way flight to Australia in Jan,1971, back when I was 17 (photo is below).
Lovin Spoonful? John Sebastian has always been one of my favorite artists. Rock'n'roll autoharp...who'da thunk it? We just won't go into where their name came from.
I grew up as a folkie....Woody Guthrie, Pete Seeger, Kingston Trio, Glenn Yarbrough, Chad Mitchell, Peter Paul & Mary, etc. actually the first concert I ever went to was Peter Paul & Mary in Cleveland (Harry Belafonte came out and did a couple songs with them too!). I slid into rock'n'roll and Blues during the late 1960s & early 70s.
Briefly played disco in the late 70s....I had to earn a living...it did not leave any permanent scars. Although to this day I cannot get the lyrics to 'Boogie Oogie Oogie', Stayin Alive, and 'Groove Line' out of my head!.... "Ooooowah Oooooooo!"
I listen to & play most everything; Blues, classical, swing, roots rock, reggae, Bakersfield country, rap, etc......music is music.

March 1971 - a 17-year-old Jack on a train somewhere in Tasmania .... trying to grow a moustache....

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Jack,

I agree with you regarding the fatigue and achiness. It does stay with you--but you learn to live with it and go on with life! I like that picture of a "young" Jack. You do know how to make the best of life--and that's what's important!

Dee Dee

Whew, kinda! I thought there may have been a problem with your reactions to Promacta. I'm sorry about your wife loosing her job. Times are tough now, with no sign at all of an improvement. Are you relieved at all to be off the Promacta? Or are you upset about it?

>>>"Are you relieved at all to be off the Promacta? Or are you upset about it?"

Don't know if I am upset. Given the option in an affordable manner, I would go back on Promacta instantly. I liked Promacta. It was just sort of in the background, side effects were tolerable, and I stayed in the 50k zone. I do miss the weight loss that I got from Promacta. Generic Cellcept is easy to use as well, but the resulting platelet count is lower.

If I am upset at all, it is more like frustration with insurance companies for the idiotic hoops required to get the most effective treatment. And not just for ITP, but across the board.

Now.....if we only had a healthcare system in the USA.....you know, something affordable.
NOTE: "Healthcare" and "mandated insurance coverage" are in no way the same thing.

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Weird jack,

I'm with you on that one! Everyday I'm very grateful for the insurance I have and my company who pays a huge cost to allow us to have it. Unfortunately not all Americans do. My sister battled cancer two years ago and what a nightmare battling the insurance was. Having illnesses and disorders is enough but a better healthcare system could greatly benefit so many.

I had insurance earlier this year. When my hemo prescribed Promacta, the insurance said they would cover 10 pills- thats it, maxed out. Come on, that would do more harm than good! haha