Aa
I'm getting my Neupogen!!!!!
I'm a little over-excited .. I've been very concerned and ready to take whatever action required if they continue with my interferon reductions and ongoing refusals for my request fo neupogen. SO much happening at once and the doctor had refused my request for neupogen. Things have just been very *thick* lately...alot to deal with and I've been just hunkering down and doing that.
Test results just got back ... and I'll cut to the chase first!!! I'm thrilled!!!! My doctor has reconsidered my request and agreed to give me the neupogen!!!!!!!!!!!!!!!
So.. in order....and then the best for last!!
Today...my hgb is at 10.1. I re-started exprex/procrit last week and now we'll continue weekly and then maintenance dose it til I'm done treatment in January. They now know I'm not going to stay up without it. I'm happy with that, it makes more sense than stop and start.
My CD4 test is even lower at 160 which is not a good number BUT .. they're not pulling the interferon like they said they would if it dropped below 200 because, apparently, it gets pulled if my lymphocytes are below .2* .. and they're at .3 .. so.. I'm *safe* on that one!!!!
My ANC is at 1.3 .. so it's up from 1.0 last time and okay if I'm on SOC which I'm not as most will remember.. I'm on the trial which forces a dosage reduction of the INF at 1.5. I have been on interferon reductions of 25% for 6 of the past 8 weeks and getting very worried about that and asked my doctor for neupogen to get me out of this dosage reduction range. He is my favourite aggressive doctor and he said no for various reasons. I was not happy about that, not at all, I see the neupogen as my only option to get all my white counts back up again.. my CD4, my lymphocytes, my ANC.. it all amounts to neutrophils and white counts and neupogen is all I've *got* and he said "No".
Well. I just got off the phone with the nurse...INF reduction again this week BUT .. the doctor must have been thinking about this ... and I have no idea why because he has resisted and resisted the neupogen....and I have continued to express my request for it getting firmer and firmer .. and last week was my firmest request yet and his firmest reponse of "No" so far.. and this week, the nurse tells me that he has reconsidered and they are processing the paperwork for the neupogen and as soon as it can get through and get approved, I get to start!!!!!!
I am *thrilled*. I'm happy I don't have to change docs, seek out other options.. I'm happy he's willing to take some chances and risks...I'm happy he heard me and he listened... I'm just .. *happy*. Happy, happy, happy. The implications of him saying "no" again were not going to be pretty, including having to change treatment options and docs and I really like him alot.
She tells me he doesn't take this lightly and I assure her neither do I. I also told her they've both made me very happy as I see this as my ONLY option to address my various white count / immune issues. I agree with them there is alot going on but I also see that everything is being addressed and monitored and handled and I'm holding up pretty good.. as long as I feel everything that CAN be done is being done......and that we're avoiding UNNECESSARY dosage reductions.
I have no idea what changed his mind but I'm thrilled at this totally unexpected development. And I'm happy.
I see the endocrinologist on Tuesday. I went for my blood test last Monday for my thyroid again and I got the call that he wants me in right away..kinda scary but hoping that's just him being diligent and we'll see.
Just in time for our Canadian Thanksgiving this weekend. I can tell you .. I am going into this weekend VERY VERY thankful.
Thank you ALL for putting up with me as I keep forging my way through all these bits and pieces and I wanted to share this with you!!!!!!!!
Trish
Test results just got back ... and I'll cut to the chase first!!! I'm thrilled!!!! My doctor has reconsidered my request and agreed to give me the neupogen!!!!!!!!!!!!!!!
So.. in order....and then the best for last!!
Today...my hgb is at 10.1. I re-started exprex/procrit last week and now we'll continue weekly and then maintenance dose it til I'm done treatment in January. They now know I'm not going to stay up without it. I'm happy with that, it makes more sense than stop and start.
My CD4 test is even lower at 160 which is not a good number BUT .. they're not pulling the interferon like they said they would if it dropped below 200 because, apparently, it gets pulled if my lymphocytes are below .2* .. and they're at .3 .. so.. I'm *safe* on that one!!!!
My ANC is at 1.3 .. so it's up from 1.0 last time and okay if I'm on SOC which I'm not as most will remember.. I'm on the trial which forces a dosage reduction of the INF at 1.5. I have been on interferon reductions of 25% for 6 of the past 8 weeks and getting very worried about that and asked my doctor for neupogen to get me out of this dosage reduction range. He is my favourite aggressive doctor and he said no for various reasons. I was not happy about that, not at all, I see the neupogen as my only option to get all my white counts back up again.. my CD4, my lymphocytes, my ANC.. it all amounts to neutrophils and white counts and neupogen is all I've *got* and he said "No".
Well. I just got off the phone with the nurse...INF reduction again this week BUT .. the doctor must have been thinking about this ... and I have no idea why because he has resisted and resisted the neupogen....and I have continued to express my request for it getting firmer and firmer .. and last week was my firmest request yet and his firmest reponse of "No" so far.. and this week, the nurse tells me that he has reconsidered and they are processing the paperwork for the neupogen and as soon as it can get through and get approved, I get to start!!!!!!
I am *thrilled*. I'm happy I don't have to change docs, seek out other options.. I'm happy he's willing to take some chances and risks...I'm happy he heard me and he listened... I'm just .. *happy*. Happy, happy, happy. The implications of him saying "no" again were not going to be pretty, including having to change treatment options and docs and I really like him alot.
She tells me he doesn't take this lightly and I assure her neither do I. I also told her they've both made me very happy as I see this as my ONLY option to address my various white count / immune issues. I agree with them there is alot going on but I also see that everything is being addressed and monitored and handled and I'm holding up pretty good.. as long as I feel everything that CAN be done is being done......and that we're avoiding UNNECESSARY dosage reductions.
I have no idea what changed his mind but I'm thrilled at this totally unexpected development. And I'm happy.
I see the endocrinologist on Tuesday. I went for my blood test last Monday for my thyroid again and I got the call that he wants me in right away..kinda scary but hoping that's just him being diligent and we'll see.
Just in time for our Canadian Thanksgiving this weekend. I can tell you .. I am going into this weekend VERY VERY thankful.
Thank you ALL for putting up with me as I keep forging my way through all these bits and pieces and I wanted to share this with you!!!!!!!!
Trish
TeeVee ..uncharted territory for me, but plenty of company here thankfully. Shall see how it goes.
KBM...thanks for that, will post the results which I hope are simply "status quo"
Trin.....I'm sorry, I've been a little wrapped up, I can't recall if I posted in your thread regarding your visit with the doc and your treatment plan for your 72 weeks. If not, congrats on getting all that sorted out and for your tenacity at that. We each have our different variables to play with and it's alot to work with. I'm very pleased and relieved for you also. Can't say I take it in stride .. I do get my shorts in a knot about things sometimes. Been very quiet lately because I've been really deep in thought and engrossed with things at hand.
Rita thank you so much for your constant encouragement, means so much. How are you doing anyway? If I'm at Week 32, you must be getting very much closer to done? Are you in countdown mode yet? Hang in there....you're almost there!!!
jasper.....glad to put a smile on your face. Have fun with THAT. :)
Isobella....my dear friend. :) So glad you are up and out of dosage reduction range finally yourself. Such a simmering worry and such a relief and I hope it holds. Dunno if the mushrooms have helped but they sure haven't hurt. Thanks for the cheers. No neup as yet, paperwork takes awhile like a couple of weeks so still dealing with the reductions and anxiously awaiting the arrival. Being....creative. ;->
Sigh Jim...I'm staying out of political threads HERE but not totally...what are you trying to do? Reduce my QOL quotient?? For the first time, I doubt your sources, Jim. Now if you'd said they exacerbate the hemoglobular process...maybe a little more credence there.
As to CD4, perhaps...I think, again, it's the thyroid situation, rising liver enzymes and dropping white counts that prompted it and the ongoing impact of the trial drug on the lymphocytes and the role they play so there are multiple factors I think that have prompted that one and I think they're simply looking to get a fuller picture. I'm okay with that one based on the things I've read. I think, however, the introduction of neupogen will cover a multitude of "sins" so to speak. Thanks, Jim.
Trish
KBM...thanks for that, will post the results which I hope are simply "status quo"
Trin.....I'm sorry, I've been a little wrapped up, I can't recall if I posted in your thread regarding your visit with the doc and your treatment plan for your 72 weeks. If not, congrats on getting all that sorted out and for your tenacity at that. We each have our different variables to play with and it's alot to work with. I'm very pleased and relieved for you also. Can't say I take it in stride .. I do get my shorts in a knot about things sometimes. Been very quiet lately because I've been really deep in thought and engrossed with things at hand.
Rita thank you so much for your constant encouragement, means so much. How are you doing anyway? If I'm at Week 32, you must be getting very much closer to done? Are you in countdown mode yet? Hang in there....you're almost there!!!
jasper.....glad to put a smile on your face. Have fun with THAT. :)
Isobella....my dear friend. :) So glad you are up and out of dosage reduction range finally yourself. Such a simmering worry and such a relief and I hope it holds. Dunno if the mushrooms have helped but they sure haven't hurt. Thanks for the cheers. No neup as yet, paperwork takes awhile like a couple of weeks so still dealing with the reductions and anxiously awaiting the arrival. Being....creative. ;->
Sigh Jim...I'm staying out of political threads HERE but not totally...what are you trying to do? Reduce my QOL quotient?? For the first time, I doubt your sources, Jim. Now if you'd said they exacerbate the hemoglobular process...maybe a little more credence there.
As to CD4, perhaps...I think, again, it's the thyroid situation, rising liver enzymes and dropping white counts that prompted it and the ongoing impact of the trial drug on the lymphocytes and the role they play so there are multiple factors I think that have prompted that one and I think they're simply looking to get a fuller picture. I'm okay with that one based on the things I've read. I think, however, the introduction of neupogen will cover a multitude of "sins" so to speak. Thanks, Jim.
Trish
Congratulations and stay out of political threads. A new study suggests they inhibit the Neupogenic process.
-- Jim
PS As to "CD4", as stated before, sometimes I get a feeling your medical team is looking for trouble. Is this a Canadian thing????
-- Jim
PS As to "CD4", as stated before, sometimes I get a feeling your medical team is looking for trouble. Is this a Canadian thing????
Congratulations on getting the neupogen! I am so happy for you. :-)
Our numbers are almost identical....my hgb is 10.1 and my anc is up to 1. Today I got the call to go back up to my full dose of peg.
Yay for us!!!! I think there is alot to be said for the face time we get with the trial docs...to let them see how determined we are :-)
Good luck...hope the neupogen kicks in soon for ya!
Our numbers are almost identical....my hgb is 10.1 and my anc is up to 1. Today I got the call to go back up to my full dose of peg.
Yay for us!!!! I think there is alot to be said for the face time we get with the trial docs...to let them see how determined we are :-)
Good luck...hope the neupogen kicks in soon for ya!
LMAO, I read you post and tried to be serious when reading it; Congrats btw and hope you feel better when it kicks in after getting it, but I got stuck in the middle so I reread it again and tried to absorb the whole context of the post but as with the first time this suck out in bold print and then thought hum… this is a switch, not that I mind a man standing up for himself but did think it was a little strange, I always thought it was the other way around.
I have continued to express my request for it getting firmer and firmer .. and last week was my firmest request yet and his firmest response of "No" so far..
ROTF
jasper
I have continued to express my request for it getting firmer and firmer .. and last week was my firmest request yet and his firmest response of "No" so far..
ROTF
jasper
I'm very relieved for you. What a journey so far but you take it in stride and keep on going - always determined. You make things happen and that's how we beat this virus. Push until they quit pushing back, or least that's been my experience. Hoping you feel better soon. Go Neup - Go antibiotic - get this women back on track!!
Trin
Trin
Trish,
Glad to hear they have finally reconsidered. Hopefully you will start to feel a bit better once your start. You are a fighter!!! I like that you will not take NO for an answer!
sending good things your way!
peace
rita
Glad to hear they have finally reconsidered. Hopefully you will start to feel a bit better once your start. You are a fighter!!! I like that you will not take NO for an answer!
sending good things your way!
peace
rita
I'm also happy for you.ONLY You know what your body needs.Sounds like you hit the soft spot on your drs. mind.He thought hard about what you said to him and made a rational decision.It's a good thing to have your mind at ease with your body.Now eat well and get sleep.Sounds like you have a plan and No One can Stop you.Keep on keepen on towards your goal.Do the things you need to do to not have to look back.Be sure and let US know what happens with your last blood test for your thyroid.
Tammy
Tammy
I am happy that you are finally getting the Neupogen! It might take awhile until they decide how much to take each week. I took 3 shots each week throughout tx. They almost upp'ed it to 4 at one point and I was glad they didn't.
Anyway, persistance paid off and the Neup will do the trick!
Enjoy your Thanksgiving!
TV
Anyway, persistance paid off and the Neup will do the trick!
Enjoy your Thanksgiving!
TV
..to combat the CD4, they're putting me on a sulfur drug, I guess a pro-active measure to keep me safe from potential infection. I happen to have an infection in my tooth, a nasty one and I start penicillin for that... I'm on quite a concoction but each drug is for something specific going on and there's alot going on but it's all getting managed and I'm managing myself to keep up with it all .. now that I know I'm getting the neupogen... I can be at peace.
A step at a time...but at least I know that everything that can be done is being done and I'm very happy with my doc that he was willing to step outside of his comfort zone and give this a shot. He's my favourite doctor and I'm happy he's keeping his rep of being my favourite aggressive doctor.
Okay. I'm done now...deep, happy sigh of relief.
A step at a time...but at least I know that everything that can be done is being done and I'm very happy with my doc that he was willing to step outside of his comfort zone and give this a shot. He's my favourite doctor and I'm happy he's keeping his rep of being my favourite aggressive doctor.
Okay. I'm done now...deep, happy sigh of relief.
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