What a wild ride! Two weeks ago, my original doctor told me to stop tx due to a low wbc: 1.4, low platelets: 33 and ANC of 500.
I didn't stop and saw another doc. I just got last Friday's results and my platelets are 46, wbc is 2.1 and my ANC is 900 AND that is before I started Neupogen!
I am so happy. It reinforces my decision to change doctors. It felt right and I think we have to follow our intuition. Its hard when you know something needs changing but you feel too sick to do anything.
Thanks to everyone on this forum for your support.
Great! Amazing that your counts were so increased before the nuepogen. Power of positive thinking or reduced interferon? Whatever, it is working. You will probably feel great when the nuepogen kicks in.
What are ANC's? I do not seem to be being tested for these. Do they also call them something else?
For me week 20 vl report 521. Slow but steady. Glad I am feeling well. Ocean.
Ocean, I am always wondering about your name. Do you live at the Ocean or on the Ocean? Are you on a ship? Are you a dolphin under the sea?
The whales are migrating as are hundreds of crows I watched flying south today. And I am still acting like a nut, yelling to every red tailed hawk circling in the sky.
hahaha on yelling at every red-tailed hawk in the sky! I can't blame you. I would be too - and probably yelling happy things to even the crows to pass along to the hawk. Your platelets went from 33 to 48 and your ANC is now 900?! That is wonderful! Very happy for you. I know you are bound to feel a huge sense of relief and accomplishment and gratitude. It's news like this that deserves to be shouted to the universe :)
Well it worked. I'm in! Wait while I wipe my feet and shut the door. I thought you only had injected 1/2 your neupogen and I was too lazy to switch back to the community to try to find out. It's a hassle! Not complaining tho!
I have a mental picture of you yelling at the red-tailed hawks and it's pretty funny! What do you say when you're trying to get their attention? Do the other birds look at you like you're crazy? Not something I could get away with where I live! I'm a little jealous of your scenic life, glad you are feeling good enough to enjoy it!
Glad to hear things are better, I have a couple of questions if you dont mind. What week are you on and what was your platelet count when you started? I ask because hubby just started 10 days ago and I worry about his platelets he started at 75,000 doc said it might get real low. Though he said he would keep him going until he gets to 30,000 maybe 25,000.
Before you did 1/2 the shot? I might be thinking of someone else, it has been about 5 minutes since I read that someone didn't inject their entire shot. My short term memory is < short term it's non-existent. And that's purely medical!
ANC - as SF girl explained to me a couple of nights ago, is the
Absolute Neutrophils Count. (Should be in your lab report)
OH - great news about your counts.
My doc called me again today to tell me my WBC was 1.7 and I had to go for another neupogen injection.
I have an appointment with him tomorrow.
On the phone, he said I would probably have to start going for neupogen at least once per month.
But when I saw the hematologist today, he said that's not usually how they do it (1x per month, I mean)
All I can say is it's a good thing a took FLMA as I'm either at the lab, or the gastro, or the heamtologist, or my primary care doc 4 to 5 times per week.
When would I have time to work even if I DID have the strength?
(To all, I'm still fighting for short termbut haven't received a penny from anywhere sionce my last paycheck, 1/15).
Sent you another little something. Check you email.
That's a drag about the insurance battles. And now the fire on top of it?
You are an inspiration.
Yes, you are correct about the ANC (Absolute Neutifil Count) on your CBC. It is part of your WBC. You should not base whether you get Neup on your WBC, but on ANC. It should be lower than 1.0 or 1000, at least! before you get Neup. There are sx from Neup, so you don't want to take it if you don't need it.
You are correct, normally you would not just get Neupogen/Neulasta once a month. Now I did get my Neulasta about once a month, it is longer lasting than Neupogen, with more sx's. CBC's should be done once a week to tell if you need to get your Neupogen or Neulasta. Ask your Hemotologist what # he wants you to go with ANC before you recieve the rescue drugs. If possible, try not to stay on the Neup/Neulasta the whole time. I quit having to have them several month ago. I had awful sides from the Neulasta, but it works to keep you on tx!
Bug, If you mean half a shot of neupogen, then yes, I did on Saturday. I goofed. I was supposed to do the whole thing, no problem.
If you mean half the shot of interferon, then yes, to that too. In fact I am convinced my platetes were dropping so quickly because I was taking too much interferon for my small body. The proof is, everything did start to improve after the dosage was reduced, but not immediately.
Cindy,I have done 8 weeks of tx. My platelets were 98 to start and dropped to 33 in 6 weeks. My doc has a bottom level of 25. Good luck.
Wyntre, I am doing my own injections, twice weekly. The nurse said often people start on twice, drop to once and may even drop to once every couple of weeks. I think its all a balance. I've only had one injection but besides the stiff, achy body sx initially, I felt better on the second day, then I had in a long time. I am still tired but my mind is more active. Its amazing what a few wbc, can do.
glad to hear of your good news. i too am considering changing docs. this came after i went to the lab to get bloodwork and realized my GI didn't even include a LFT or PCR, only cbc and tsh. and this was a 6 month standing order. hello... hope things stay on the right track for you!
I am so silly. When OH was still hanging around yelling at us for dinner, I realised her call sounds like "hawwwk, hawwwwk". SO thats what I yell at them! When she first left, I thought I saw her, and ran to get a frozen quail. There I was like a nutcase shaking a dead frozen bird up to the sky yelling,"hawwk, hawwk".
The hawk flew off when we were weaning her and another hawk, maybe her mother?, chased her away. They are very territorial so it is unlikely she will show up right here. Maybe down the road?
We are in the migratory flyway, lots of birds, coming and going, flying through a Maxfield Parrish landscape.
Friole, thanks for the info re. ANC./ On my labs they are called gran. My doc said danger zone is .5 I seem to be ranging from 1.0 to 1.6. They explaind to me that it is a % of the WBCs. But all I have to do is watch this number and don't have to do the math.
Orphandedhawk, info on my name. I live at about 1500 ft., about 1 mile from the ocean as the crow (or hawk flies). Our weather is influenced by the ocean. I would rather be in, on or near the water at all times. Rivers are good too) I used to be a salmon fisherwoman and live on a boat in the summer. That seems like a far away dream now. I love hearing your hawk stories. Thanks, Ocean
Sounds like Hawaii, to me. I lived there for a while, swam with dolphins, turtles, and manta-rays.
I hope someday I can immerse myself in the salt water again without fear of my ascites swelling up.
No hawks yet today but a cool woodpecker scratching itself on the oak tree. And the turkey vultures are stretching thier silvery wings; beautiful birds in the air that look so ugly on the ground.
No, I am a California gal like yourself ( I believe). I dream of Hawaii. Lived ther back in the lat 70's for a while. I know what you mean about the vultures. They are so impressive when they are speading their wings to dry. No birds here today. Just fog.
Stay warm and be well, Ocean.
This is a great thread - from the great news on the platelets and anc, to hawks, fisherwomen, frozen quails (I took a thawed chicken to a rt-hawk once - was in rehab, the hawk was; the quail pop here has diminished to zilch on account of man, hunting, pestacides, farming,... off my box), but anyhow, and I used to take live bream to the osprey in rehab. Love wookpeeekers. Stop picking on the woodpeeekers Bug! I did a note to Myown over on the other side, and my word, "Viral Skum" (I can't spell it or it'll star it out and look like Viral Sheeet. I don't like this new forum format, but I love hawks, wook peeeters, salmon, fish, quail, and OH's platelets going up. Oh, and turkey buzzards too. So cool. I'm going to bed. It's cold, and I want get under the E-blanket.
I've become such a birdbrain since I started tx I didn't even notice the sapsuckker! Oce I tried to write about a chinese herb called Doung ( rymes with kong) Kwai, and the bleebed out the first word.
The bird news today is a beautiful white egret flying along the meridian on the freeway.
Tomorrow I get my vl, info. and find out if I can stop this damn Neupogen. I feel both like a voodoo doll and the voodoo doll's intented. The nurse at the hospital had the nerve to suggest acupuncture...right, just what I need, more flicken holes stuck in me. OOps, here comes a riba rage. Bye.
Bug, I have a good friend who's a wildlife rehabber, animal lover, and investigator for cruelty cases for our county. SHe's been doing it about 33 years. She gets injured birds of prey (hawks, ospreys). She has a lot of rescued horses (court order, confiscated from the owners - neglect / abuse cases.) She's a winner. Her new addition this week is a 9 ounce baby nutria someone brought her - they thought it was a baby beaver.
OH - lmao on doung. **** Kwai. lmao. I needed a good laugh right now. Speaking of sapsuckers and bellies, we have (get this) "yellow bellied" sapsuckers here. I came upon the most beautiful site of white egrets I'd ever seen a few years ago - about 10 of them sitting in a huge cypress tree (white on green). It'll be birds that get me through treatment (IF I ever get on it.) Glad you can stop the neupogen!!!! I bet you do feel like a pin cushion. Glad your belly can take a break. You're gonna get through this!
The bird news here today was the Orioles - they migrate through in Dec and stay for about 4 months, and they love marshmellows and orange slices.
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