At the same time I can tell that it's going to take a while for these drugs to filter out of my system. The fatigue still hangs out in the background telling me that this is not over with yet....don't push it too hard.
That's ok, because it's not flooring me. Outside of the bone aches from the Nuepogen last night I feel pretty good! After I grab the Ibuprofen to help get rid of that I should feel even better.
With the Holiday I'm thinking that I won't hear from Hershey to restart until Friday.
Tonight I'll bake the pies, pumpkin roll and make the stuffing. My daughter is coming over to spend the night to help me cook tonight and tomorrow.
This will be the first time in my life that the holidays will not make me long for my own family (Mom, Dad, Brothers and Sisters)....this virus and treatment has finally, after all of these years, made me realize that they are and always have been gone. I think that I can be ok with that.
It's Thanksgiving and I have sooooo much to be thankful for.....Life is beautiful.
Have a Beautiful Thanksgiving Everyone!
4 comments:
Hi Laurie I hope you have a wonderful Thanksgiving, just reading your cooking made me hungry
I got a call today, Roche has taken me off the study, they say my number got under 500 (.50?) which triggered a CD4/CD? test which has to be at 200 and mine was 173. I have a feeling that there are decimals in there some place :) It was my Lymphocytes or Neutraphils, sorry brain fog really bad right now. I am in shock, I only had 5 more shots to take. She said if I were to continue I could get a very serious infection. Sorry to be a downer after your mouthwatering blog :).
Lots of good thoughts and love coming your way
Dorene,
It's your Lymphocytes. It's the reason that Roche scrapped the trial drug and are starting over from scratch with it.
My interferon is still on hold because mine have dropped below 500 also. We're waiting to hear the rest of the blood test to find out how low.
The initial test for Lyphocytes test the absolute Lyphocytes. If that test falls below 500 they go forward and do the CD4/CD. That test breaks down even more to test further to see which type of the lymphocytes have the low count. I'll post more on the front page....
You've made it 43 weeks. That more than likely will be good.
At what week did you go undectable?
Good Morning Laurie, thank you so much for thanking your time to explain all of this. I am just shell shocked right now. I also went back and found that I have had Lymphocytes under 500 a few times since we stopped the trial (ProDrug) and 3 times where the CD3/CD/4 was under 200 but maybe that was all closer to when they they were hoping our numbers would go back up and now it has been 5 months since stopping the produg and I am still not coming back up. I am so torn! I wanted it to be over, I have had a terrible ear ache and sore throat for a week but at the same time I was so proud of myself with sticking with this treatment and thought I would not survive unless I did the full 48 weeks. I know that is silly I know that in this trial there are people who, if they were undetectable at 4 weeks could stop at 24
Oh, I was UND at 7 or 8 weeks.
I really appreciate your words of advicre I don't know if I am happy or not since I feel sick and I just stopped the Riba last night and this Friday will be the first time I have not taken the shot since Feb 1st. I would like to feel better but more important I want to kill this disease. I don't know if I am making any sense and I apologize I am just crying, so thankful for you. I could not have made it this far without out you and I hope that some day I will walk in to your Pub with my husband and I can meet you and Jimmy
Lots of love coming your way
D
p.s. do you think there is a rescue drug I could take if I were not on this trial so I could continue the Peg and Riba?
Dorene,
UND at 7-8 weeks!!! Good for you!!! You really probably have already completed your battle.
The last 5 weeks are not worth the risk to your immune system.
Rescue drugs?
If it where your Nuetrophils then you could take the Nuepogen....Procrit if it where your red blood cells like platlets.
But for Lymphocytes?
Gee I really don't know.
I did hear that they gave someone who went off of the trial early something for the Lymphocytes but I don't think they ever said what the name of it was.
You are off the trial now and I'm pretty sure that they can give you whatever you need.
Thing is that before they go starting you on yet another drug, they'll probably take the "wait and see" road. Your Lymphocytes may just return on their own just as fast as taking something. Especially since anything that they give you will probably take a week or two to even begin working at all.
The Lymphocytes are produced in your bone marrow just like the Nuetrophils. Whatever drug they'd give you would be one that would coaxe your marrow into producing....the drug itself wouldn't produce them for you. Your body still has to do the work.
With Nuepogen it causes me bone pain at full dosage so I have to split it into 2 dosages over 2 different days....then it just causes bone aches.
You really may want to wait to see if your body will take care of itself before you have to start taking something with new side effects.
I know it's ruff. I know you're feeling like hell right now. I also know that you've got an infection in your body that's bound to drain you not only physically, but emotionally too. Not to mention that you've just gotten this unexpected news to top it off.
I know there's not a whole lot that I can say to make you feel much better....But you have been through an incrediable battle and you now need some time and rest to heal those wounds.
Cry....get it out....and then sleep.
Don't think about it anymore. Just concentrate on making your body get well again.
My thoughts and prayers are with you.
Take care my friend.
((Great Big Hugs))
Love
Laurie
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