Nurse Giving Me Some Attitude & WBC Critical #59

It just goes to prove how it's a miracle to stay on this treatment. My white blood cells are what she called critical. I don't know what my Neuts are and she kind of mumbled over them, BUT if they are the same as they always were I should be OK for a bit. Everyone I know will be banned from getting near me. My neuts ranged around .7 or .9 the last few tests and even though they are grossly low I still have some protection. There is a drug to bring up white blood cells, but they will not offer these "rescue" drugs here. They will reduce the interferon first. Not a thing I am keen to do.

If I were anyone else, Nurse told me on the phone, she would instruct me to reduce the interferon (injection) from 5 to 4 and see if the WBC will come up, but she knows I won't do it if she asks. I told her she was right so she compromised and will give me another two weeks to see if my bloods come up. My hemoglobin is 9.3 (should be minimum 120) and my blood sugar is low which is strange for this treatment. However, I was told that any pre existing problems prior to starting treatment would probably be worse on treatment. I always had a tendency to have low blood sugar and it's a problem with this treatment for me. I was gloating that the blood sugar had come up you regarding my Sept 4 tests. I’m really thinking that having my blood tests done every eight weeks isn’t enough on this chemotherapy. The clinic is so cost efficient it’s nauseating.

Well, if my bloods do not improve in two weeks I'll agree to reduce the interferon for a couple of weeks. Then I'll try to go up to full dose again to try and get the last weeks in on full treatment. I'll deal with that battle if it comes. Nurse is mailing me my test results. She is also sending me blood tests to have done November 12, but I won't get them done until the Friday of that week on the 14th and that will give me another few days. She won't get the results until the third week. I also intend to get my script for four more weeks refilled a bit early so I have them in the refrigerator. Just as a precaution, but I expect if the bloods don’t improve I’ll have to take the interferon reduction.

There is nothing I can eat or do to bring them up. It's chemotherapy without rescue drugs. It’s like riding a motor bike at warp speed and not wearing a helmet.

I managed to get myself into another conflict with nurse.
I’ll give some background here.

Because the clinic is very stingy with PCR testing I was “allowed” one standard test prior to starting tx to determine my viral load and then I was tested at four weeks into treatment to see what my initial log drop would be on tx. It was determined that I had to do 72 weeks of chemo following that four week PCR test because I didn’t have the two log drop. The clinic would not test me until 24 weeks and I came back undetectable so I continue on from 24 weeks to 72 weeks without a PCR test to determine if I am still undetectable. It’s not logical, but it’s cost effective for the clinic without any regard for the patient who might have had a breakthrough in the virus and is taking this insecticide and rat poison chemical for nothing. I’ll not sugar coat this situation...treatment is harsh and brutal.

My argument with Nurse was regarding my end of treatment PCR (if I make it to 72 weeks) and what is the point of it? Here they don’t give a “rat’s ass” about you being undetectable from week 24 to week 72 and that’s a long time to leave someone on treatment if it’s not working and you have a breakthrough.

I questioned if I am “allowed” one PCR test at the end of treatment then I should be able to wait until at least 12 weeks following end of treatment to have the test to see if there is a possibility that the virus is back. She went on the defence mode and indicated that it was procedure and protocol of the clinic to do an end of treatment PCR. She told me to “stop reading and she is the trained professional and I should let her do her job and I should be the patient” in so many words.

I asked if the PCR test has to go on a different piece of paper and she said...”I’ll escort you down to the blood lab and watch you get it done.” LOL I have her running and I am the “fly in the ointment” for her. I think it’s so stupid to worry about whether I am undetectable at the end of treatment when they can check me twelve weeks later to see if I am still undetectable. I know it’s for the clinic’s own records. However, their treatment is flawed because they give no check for the hapless soul who has had a breakthrough during treatment, but they refuse to check it until the end. Going 4 weeks to 24 weeks is a stretch, but leaving someone 24 weeks to 72 weeks is just too stupid for the sake of cost. Forget the stress on the patient’s body being left on treatment so long.

I’ll post this on the forum for input regarding my conflict with nurse.