got a count yesterday.....

I dropped by LabCorp yesterday on the way home from work to get a platelet count.
My hematologist just called to let me know the magic number.
Drum-roll please; 15k this month.

Counts in the past 12 months have ranged from 9k to 16k, with one 21k spike in January.
Currently using 1,000mg Cellcept daily for treatment.

I'm into ITP-year-13 now, so it is no big deal......life continues.


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Thanks for the update, Jack!

do you have any symptoms at these types of counts for you?

Yep Amber, I have symptoms. It comes with the territory.

Perhaps I've become jaded in the past 12+ years, but I try not to let symptoms get in the way of life.
Or maybe 'jaded' is a misnomer....'accustomed to' may be more accurate. I'd rather have some bruises and take a little care, than spend time in The James hospital. It is a wonderful hospital (a brand new 21 story building now)...but I don't like hospitals.
From past experience, I know what warrants a call to my hematologist and what doesn't. Luckily, he does as well....and we trust each other.

I can deal with the symptoms other than I get emotional. I know its because I'm a female but I'm not a crier and that's all I want to do when I have low numbers. I had backed off of my Xanax but it looks like I'll have to get back on track with it.

Jack
Thanks for the update. Seeing your great attitude gives me strength with my low count as well. I'm at 14.

Jack what are you going to do with all those platelets
Were you eating Spam to bring the count up - ha ha

A man here kept a count at 5k if I remember right - our ITP group went by the wayside unfortunately so I don't know how he is doing. But when we were all getting together he was doing well.

I am glad you are coping so well it is always good to see people who have such a positive outlook even when it would be easy to wallow.

I hope your counts stay as stable as they are for a long time or heck even go up a bit

And Amberyard lots of us get down when we get low numbers your not alone in wanting to cry at low numbers

But we got to keep moving forwards the best we can Like Jack

Yesterday (4-20-15) I had my 6-month checkup at The James (The Ohio State University Comprehensive Cancer Center - Arthur G. James Cancer Hospital and Richard J. Solove Research Institute .... commonly shortened to just James Cancer Hospital, officially abbreviated OSUCCC - James, and colloquially referred to as The James). A long name for a wonderful hospital.

Anyway, I had a nice chat with my hematologist. We talked about music, craft beer, shooting, archery...and ITP of course. In year number 13 of the adventure, there isn't much left about ITP for us to discuss. I'm staying with Cellcept as a treatment. It is affordable and it keeps me in the 9k-20k range with minimal side effects.

The good news is; I don't have to go back for a year.

No real point in the 6 month timetable now. It isn't as though I expect to be 'cured'...and that is fine really.
I know my symptoms, Cellcept works okay, I've learned over the years what to do and not do.
If I need anything, I have my hematologist's cell number. Plus, he calls me every month when he looks at my count results...so he is in the loop.
I will continue to get a count every month and do not return to The James until 2016.

Life rolls on.


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Thanks for the update. I hope one day to have your attitude and a glass of wine! What is your cellcept dose?

Quote; "What is your cellcept dose?"

Not a big dosage, just 1 gram a day (500mg twice a day).
I really do not recommend Cellcept. I only use it because it is inexpensive.
Thank you A.C.A. for nearly doubling my insurance out-of-pocket max over the past three years.

Jack, you are truly an inspiration!! Thank you for the update! It's people like you that give us all hope. I wish Deln would read some of your posts.

If I relapse, I plan on doing like you do--and keep the cost down.

Years ago I remember reading about a lot of people who had low counts. There was a young girl who's platelets stayed at 5 all the time (at least for two years). I also met a older man at the Denver conference who's platelets stayed at 10--even though he had tried everything.

Good Luck,

Dee Dee

Yeah, the ACA seems to have been a disaster for everyone I know. They either had their work hours cut, have unaffordable premiums or have deductibles so large ($10,000) that they can't afford to go to the doctor or have tests done. If your deductible is that big, what good is having the insurance? The insurance companies really took advantage of this and healthcare will never be the same again. I don't have any deductible right now but they are denying everything I need (tests, treatments, etc).

Yep Sandi....everyone I know as well....even every doctor I know (and I know quite a few).
I apologize for sometimes throwing that in there though.
Frustration with the current system, is not reason for me to whine about it here.

On a side note; At least my hematologist works with me to keep my costs down.


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Don't be sorry. If we don't know the real stories, everyone will be under the false impression that all is well with healthcare system. It's not. This affects every single person here. I agree that political debates shouldn't happen, but it hasn't gone that far. We've only discussed how it's been affecting people.