I'd like to ask for your indulgence in advance. I am in an incredibly whiny mood and am quite sure I'm overreacting so I'm hoping some of you can either validate my mood or help me laugh at myself.
I am treating with a GP in a rural area. The treatment is working so maybe I should just accept that keep plugging along. I had trouble getting the results of the five week PCR sent to me and finally my husband went to the office and picked it up. While he was there he asked if I was ever going to see the doctor. We had never made any follow up appointments, he wrote prescriptions for the medicine, set up blood work every two weeks, and that seemed to be it. I had to beg by phone for the PCR that he authorized at five weeks.
At the appointment we didn't really discuss much except the blood counts. I asked for another PCR at twelve weeks and he agreed. I asked why there was no ANC number on the blood tests and he said he could tell me that. He did some math with numbers on the standard blood work (and if anyone can tell me that formula I would be grateful!} and said ANC is 2300, at the low end of normal but OK. He said to start going for the blood tests every week.
So the next Friday I went. The nurse called that same day and said everything is fine and I do not need another blood test for a month. I told her that the doctor had indicated I would need one every week and that I have a PCR coming up in three weeks. She said no, no tests were necessary for a month.
I don't need to tell anyone here how hard it is to decide to treat. We start in feeling fine and they give us toxic chemicals that make us feel like CR$%!!! Is it too much to expect that a close eye is kept on the effects this stuff is having on us? Am I unreasonable in my expectations?
I'd appreciate any thoughts on this because I am obsessing and feeling neglected. How often do those of you treating have blood tests?
And if I'm just being a big whiner please tell me that too. Sometimes it's hard to have a realistic perspective.
It seems to me that this is still considered an orphan disease - although an epidemic - as such, there seems to be a wide variation in application of what should be an accepted protocol. Generally, cbc should be done x1/wk the first month with pcr at week 4 - then monthly unless there are problems with cbc such as dropping hemoglobin etc. Keep fighting for what you feel is right -- no one else will do it for you. Good luck
Here's the online calculator for ANC, if you open the link below :
"Since percentages might be misleading in some patients, absolute values of the various types of WBCs can also be reported, such as the absolute neutrophil count (ANC), also known as the absolute granulocyte count or AGC. Absolute values are calculated by multiplying the number of WBCs by the percentage of each type of white cell and can aid in diagnosing illness and monitoring therapy."
See if you can arrange to receive hard copies of all your lab results. You'll feel so much better about things when you can hold your own results in your hands.
I think what's annoying here is the conflicting input you're getting from the doc and the nurse. Talk to the doc about this and make sure the nurse is on the same page.
I found I could make extra arrangements directly with my nurse, like having my results mailed home. (It's an advantage if the nurse is on board with you, as you can often reach her more quickly than the doc.)
There seems to be a fair amount of difference as to how often people do routine labwork, depending on the doc. In your situation, though, your doc is saying one thing and the nurse another. That would really bother me.
Personally, my CBC's and biochemistry were tested every week for the first twelve weeks and then once a month. That seemed often compared to some others who were treating at the time I did.
The great thing in all this is you persuaded the doc to do a four week PCR (was that just before your fifth shot?), as well as the more standard twelve week one. If you're doing forty-eight weeks of tx, see if he'll also do a PCR at week twenty-four to rule out break-through, which is rare.
You're definitely not being a whiner. The doc and nurse should coordinate their message!
Couldn't have said it better than portann above. I think above all else, give yourself a pat on the back for being a proactive patient and demanding the care you deserve -- but don't lose your sense of humor either! I just hope your doc and nurse can get on the same page with you.
At the start of treatment my husband had bloodwork scheduled for every 2 weeks until week 12 including PCRs at weeks 4, 8, 12 (and 24). He was initially scheduled to draw blood only monthly after week 12, but after a change in circumstances, he has had CBCs every week starting at week 16. After a couple of "unnoticed" test results, I learned it's much easier just to ask to be carbon-copied on all labwork results so you can see them for yourself. I tend to obsess over my husband's care and worry about him being neglected, but then, he wishes he didn't have to draw blood every week!
And amongst friends in hepperland, sharing a glass of whine or two is a necessary thing :). Good luck with getting it all hammered out. ~eureka
I managed to get the PCR on the day of my sixth shot. I tried hard for the day of the fifth shot and felt lucky I convinced him that couldn't wait till week 12. I'm 2b genotype and <43 at week five. Things are looking good for me and yet here I sit obsessing. It must be the medicine!!! And the miss communication. Thank you for the formula, Susan. But I'm still not sure, the formula is ANC=[(neutrophil% + band %)] x total WBC, but I can find nothing that says neutrophil % or band %. Here are my options on %s: HCT, LYM, MONO, GRAN, EOS, BASO. Any ideas?
When I look around here and see all the people who went 72 weeks or longer and some are still looking to go again, and I'm on week 10, likely to be successful, and whining like a three year old at times, I bounce between shame and gratitude that you put up with me. You're such a compassionate bunch. I'm counting on joining you in your calm support of newbies when I gain some helpful experience.
I'm not sure but think bands can be ignored. Anyone else know for sure?
"Technically, the granulocytes or neutrophils are considered the total of segs + bands, but bands are usually so few in number that they may go unreported."
I hope one day everyone, no matter his or her genotype, will succeed the first time with shorter treatment time.
In the meantime, geno two's like yourself are almost always what I'd call dream geno's and have simply terrific response rates to treatment. Hang in there - I'll bet the house that you have this beat, as long as you continue to comply with your tx meds.
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