It wasn't what I expected....I'm still holding off on my interferon. My Lymphocytes have dropped below 500 and they're running the CD4/CD to see if my T cells are below 200. That takes about a week to run the test so I won't have the results until at least Monday.
Because my friend Dorene has just gotten the news that they've pulled her from tx due to low Lymphocytes I figured I'd try to give it a stab to see if I can try to explain what this is all about....although I may not have a total picture and I can only explain it in layman terms(I am NOT a Doctor).....
Lymphocytes are made up of 2 different types - T-cells and B-cells.Both cells work to recognize foreign invaders like bacteria or a virus. Once the infection is recognized, B cells work to neutralize the infection and T cells produce toxic granules to induce the death of the bacterial or viral cells.
I'm sure there's a whole lot more to it than my sorry little paragraph explains....but that's the gist of it.....as I know it.
When our blood has been tested over these past few months since tx began, they've been watching our Lymphocytes because the trial drug caused many of us to have low counts.(Some of us where pulled from the trial at 12 weeks and some of those are still waiting for their counts to go back to normal.) The test that they usually run is an absolute count. If the absolute count falls below 500 they run a CD4/CD count. This test specifically measures the percentage of CD4 T cells in the blood. If the CD4 T cell is below 200 life becomes a little more dangerous. The bodies ability to recognized and kill off invading bacteria and virus' becomes compromised (much like an AIDS patient).
When the count is less than 200, interferon has got to be stopped because interferon itself can suppress the bone marrow from producing Lymphocytes.
......That's how I understand it. I may be wrong, so let me know if I am.
Anyway, this is not the first time that my Lymphocytes have come back below 500. But when they did the further testing I was above 200 so tx continued.
I realize that this time may be different since I have had 2 ear infections back to back in a very short period of time.
If they decide to pull me from tx....so be it.
I'm hoping that I've already slayed my bastard of a Dragon since I was undetectable at week 2. I didn't want to gamble by stopping tx 7 weeks early....but I think the gamble of playing with totally screwing up my immune system versus the now low risk of not clearing the virus......it's just not worth it.
Hopefully Monday will come and they'll tell me that my count is still above 200.
No matter how I look at it I am blessed. I'm happy and surrounded by a beautiful loving family and an incredibly wonderful Husband.
I am thankful.
Happy Thanksgiving Day Everyone!
3 comments:
Morning Laurie, thank you again for the explanation. I wanted to let you know that I was told that when my lymphocytes went below 500 then it triggered the CD test which has to be at least at 200, mine is at 173 and looking back at all of my blood work I can see where this has happened at least 3 times since we went off the trial part of the drug. I assume that Roche thought that our lymphocytes and then CD would go back up but when this test was done on blood drawn last Friday 11/21 then my office got a call late Wednesday. She said she had others to call so I wonder if this is another "change" in the protocol. I wonder if we were not on a trial if this would be a problem. I am not a doctor so don't know, wish there was someone to ask. Thank you again for sharing, I do appreciate so much
Love
D
Dorene,
The CD is marker that they use to identify the different types of Lyphocytes. ie. T Cells and B Cells.
So in essence, the "CD" is the count of Lymphocytes.
173 is way too low! A normal body has 800 or higher....Yes it is a real problem.
Let me explain it to you this way - You are already running on low Nuetrophils. Nuetrophils are a type of white blood cell and is your bodies first defence against infection. Regular tx causes the Nuetrophil count to go low.
Now your Lymphocytes are low also. Your body is getting to the point that it has next to no defence against Desease.
Right now, it's why you're so sick with your ears and throat. It could get worst, you could very easily wind up Pneumonia with a count below 200.
With an already low Nuetrophil count and also low Lymphocytes you have next to no immune system to speak of. You truly can not live without that.
This is not a new protocol for the trial. Under standard care they'd yank you too....although standard care doesn't usually cause this to happen. Standard care doesn't usually hit both Lymphocytes and Nuetrolphils so hard. The Trial drug has had a major impact in all of this.
Roches Protocol on this actually changed at week 10. That's when they dropped the first people off of the trial for low Lymphocyte counts. It's when they first realized how much impact the drug was having on patients.
You are not making a mistake by ending tx. You have already got a bad infection....you are witnessing what your Doctor see's in you blood counts. Your Doctor wants to kill the virus...not you.
Please, Dorene, if you go to the HepC forums right now looking for answers from them...please do not take everything that they have to say too seriously. First of all the majority of them don't know what a Lyphocyte is and almost all of them are on and have been on Standard care. I hate to say it this way....but really most of them just don't know what they're talking about. Go to your Doctor or research nurse, ask them to please explain all of this in layman terms to you. Even print off my posts and take them with you if you need.
This Is Serious.....You Are Doing The Right Thing and so is Roche and your Doctor. After researching all of this I believe that 100%.
Take Care My Friend,
((Hugs))
Love
Laurie
Dear Laurie, I love you so much for taking the time to explain everything to me. And knowing me like you do I did go to Med Help and I saw that Trish who started about the same time you and I did was pulled off the end of October. I got to read her posts and her struggles with just continuing the drug and what if the trial protocol was stricter than the SOC and she was told what you just you told me, they will not even let her "flip" off the trial to a SOC. I am so upset, guess I just had that "
warrior" thought in my head that I must do 48 weeks or it doesn't count. YOu are right, I woke with a fever, throat ear is killing me, will go to my regular dr Monday as the trial people don't really seem to take care of sx. Thank you Laurie so much, I do not think I could make it through this with out you and all your friends. I will wrap my brain around this and I will realize that I did the best I could and I will take the 6 weeks worth of meds back and be done with it.
Thank you Laurie, you are the most wonderful person I have ever met on the Web. Thank you for always always being there and taking the time to explain everything and never making me feel stupid.
Love
D
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