Fatigue, shortness of breathe, dizziness are back again but stronger now.

[Pauly Boy]

Afternoon All,
Well, just when I thought I had this thing on Auto Pilot and I was cruising home, Bang!!! Type 2b, in week 18 of 24. On Peg 180 and Riba 1200. I started Procrit 1mL a week in week 4 due to shortness of breathe, fatigue, dizziness, after labs showed a 3 point drop in HMGB. After a week or so I started feeling better and was able to deal with any sx left. Last week, my labs all came back A-OK: HMGB, Thyroid, T-4, but I started feeling some of those same sx coming back, a day of feeling better and now second day of same sx but more intense. I'm going down for labs now, I'll check in later. If anyone has any experiences to share, Please do... Thank you,      Later,       Pauly

[Sweetie6852]

Hi - my diabetes is really under control - AIC is 6.5 and 3 shots of Novalog a day.  NP just emailed and said they are ordering Procrit from insurance - significant anemia - this is what she wrote the red blood cell count was 3.34 -hemoglobin 10.1, hematocrit 29.9.   I have to look it up somewhere to see what this means and how bad this is and my PCR takes a week to come back she said.  If anyone knows off the top their head saves me trying to figuring it out - that'd be great.  Thanks Kyle

[FlGuy]

Enjoy your coccoon for a few more weeks.  The fact that you were undetectable since week 4 and that that you've been staying at at least 1000 mg the whole time is great and a reason to be very optimistic about the results. Sleep well, and often.  It will all be over soon.

[phantom66]

Hi Pauly Boy
To boost your appetite, ask your doc about Megastrol if you've tried it. Megastrol comes as tablets and as a liquid to take by mouth. It surely helped me alot.

Hi Sweetie6852,
I'm also diabetic. During my first tx, I continued to take the same pill, the same dosage, and totally neglected checking my blood sugar. For a period of time, I felt like I couldn't move around the house, absolutely no energy! I blamed it all to my depression. Guess what? My wife, an RN, suspected something else wrong with me. She asked my family doc to test for my fasting blood sugar as well as HbA1C. The blood test result shook up everyone. My fasting glucose level was 525! My doc said I was lucky because I could have gone into coma. She wrote me a rx for insulin right away. I've been on insulin since then, 4x a day: novolog 3x, lantus 1x.

Good luck to both of you. I could go thru it 2x, you guys can do it, too. Think about your family. I have two little ones, 10 and 12, so I do whatever I can for them, and of course for my very patient, supportive and lovely wife.

[Pauly Boy]

Thanx for all the support and info regarding my post. Where else can I go, get all of the help I do and imagine: Not even a copay!!! Went over and had blood drawn, results tomorrow. FlGuy, I had 4 & 12 week UND and dropped my riba down from 1200 to 1000 when I started taking Procrit. Since I had this type of sx with the dropp in RBCells and wondered if a drop in white blood cells would give the same sx: fatigue, etc.
Deb, That's exactly what I expected when I started the procrit: some type of a rush of energy; old habits, etc! It has stopped the drop in the HMGB and along with that the extreme sx. I'm committed as you to see this tx thru, come hell or high water. No way I'd go this far and quit. Even if I had to go into a cocoon, I can do anything for 5 weeks!!! And I have!!! Maybe I'll explore the possibility of increasing the Procrit dose...  I didn't know you would be tailgating me thru tx, it feels like we've been doing this for a long time. It does suck, but nothing compared to the options!!! Right?!!! Thanx, Again'
Thanx, KAMO and phantom, I'm fortunate that the Procrit has
helped up to this point. My doc told me to eat more, too. Who the hell wants to eat: everything tastes like cardboard. Yummmm.
Glad to hear about your success,phantom. You had to really work it to get it: like nygirl. I like those happy ending stories..
Sweetie, prayers and positive beams to you for good news tomorrow. Keep the faith. Yes, I laugh to myself because sometimes this tx feels like sometype of a weird experiment on the island of Dr. Moreau ( spelling?). Thanx for keeping an eye out, I do bear a lot of watchin'!!!   Thanx All...............
I'm going back to bed now, nightee night!!!       Pauly  

[Sweetie6852]

Hi PaulyBoy
Well I went for my first visit back to the Dr. since starting tx and same thing - wiped out, shortness of breath, the Nurse Practitioner says she's sure I'm anemic and Procrit material but will know by tomorrow morning.  Also with the ups and downs and inability to handle just about anything - we're also going to try Prozac.  I've never been on any real medications for anything my whole life except for diabetes so this is definitely been a learning experience.  I also had a 4 week PCR done as well.  She expects to give a call in the morning about the Procrit.  I also told her about this forum - sent her the website and told her how supportive and great everyone's been on here.  I told her the real world has no clue what goes on - and today I'm wiped.  I explained today as a day just full of left turns.  Thanks for the support and PaulyBoy - I'm keeping an eye on you.

[phantom66]

I've been there and done that, so I under stand how you feel. You only have a few weeks to go. Try to eat more, if you could, to regain some strength. Yes, I know you don't feel like eating anything... I myself went through 6 months the first time. It was clear for 4 months after the tx, but it came back. The first diagnose was genotye 7C. I had the feeling something was wrong. I requested for a genotype test; it turned out to be genotype 1B the second time. My Doc prescribed interferon and rebetol for one whole year the second time. My RBC and WBC went down and down. Like you, I relied on Procit for RBC and Neupogen for WBC. I had to switch to three antidepressants before I felt better. Check with your Doc to see if you're in depression. I've been virus free and clear, knock on wood, for 8 months now. I'm still on antidepressant. Keep up you guys. You're NOT alone.

[KAMO]

I know I can feel the sx of anemia a few days after the inferon.  It usually takes a day or so for my body to adjust to the drop, then I feel fine.  The only time I haven't been able to adjust is when my red count is below 8 and right now I'm at 6.6.  I have all the things that go along with low count and I have been on Procrit 80,000 per week for about 4 months.  I know lots of people here rave about Procrit but for me, it's not raising my counts - maybe it prolongs the drop?  I'm going tomorrow for my second blood transfusion since starting tx in April and really looking forward to it.

[NYgirl]

ps hang in there Pauly - you ARE almost done. When you get down remember me...on week 53 and NOT stopping no matter HOW Much and desperatly I have wanted to.  19 more to go for me STILL...but I wont quit if you wont!  :)

[NYgirl]

Pauly...Procrit usually takes about 2 - 6 weeks to really work.  You start feeling better when you start taking it and your hemo might have gone up a LITTLE but it's unlikely it went up all THAT MUCH from that short a time period.

Its not an instant energy shot or anything it has a huge job to do - going in to your bone marrow to create more RBCs.

So I think you still are having the SAME side effects of the anemia that you were before...nothing really different.

The good thing is it WILL get better.

I was on 40,000 Epo once a week and it kept me from dropping any lower but it wasn't until they put me on 2x a week @ 40,000 that my hemo actually went UP.

So you will need to CAREFULLY monitor your CBC to make sure it's going up AND also that it doesn't go to HIGH.

Sorry...it does suck.

[FlGuy]

Have you had an undetectable pcr?  What week? And, have you been on 1200 mg riba the whole trip?  You're getting down to a small number of weeks, not much longer.