Can't you convince him to let you try upping the Neupogen or something (I don't know about whites I never had trouble with them).
This is so not fair. Why can't they do something aside from quit tx? Isn't there anything!
My understanding is that many doctors allow platelets to drop to 30-40 before backing off the peg, or temporarily discontinuing treatment. I believe Goofy's went south of 40 at one point, but he still remained on full meds. My Neuts have been as low as 325 and the doctor let me keep going without Neupogen.
If you're uncomfortable stopping treatment, and can't convince your doctor otherwise -- you might want to switch/consult with a different hepatologist (liver specialist)who might allow you to continue treatment with the numbers you currently have.
Sorry dale, I know how bad you want to continue. Jim is right , maybe you should get a 2nd opinion.
I am so sorry. What a shock that must have been.
Obviously this should be your decision in conjunction with your doctor and I'm with jim on this one. If you aren't comfortable look for another doc that might offer a different protocol.
I wish I had something better to say to you to help you feel better. I hate this disease and I hate this treatment!!
Hey Debbie. From what I am being told there are no rescue drugs for platelets. I've noticed over the past few weeks that I've been bleeding alot for shots, blood draws or scratches. He told me that with the count as low as it is to be careful shaving and don't have any accidents. I don't know if I can pause and restart. I do know that I will not do the treatment again. No assurance that the platelets won't cycle up and down and 48 weeks turns into 96 weeks of stop and go. Quality of life has to be figured in there somewhere. My white count isn't a problem if I double the Nupogen. It will take a week to 10 days and it will go to the high side of normal. Extremely disgusted right now with turn of events. I hope everything keeps going well for you Deb and you whip the thyroid issue. Take care. Dale
What the doctor is telling me is that when platelets go to low that there is a danger of internal bleeding especially in the brain and he will not pull me until he see todays results but it the decline in the platelets have continued down I would have to cease the Pegasys. Temp or permanent - uncertain. He said the treatment was going really well until this problem. My white are easy to fix with the nupogen. Dyce you and I were suppose to finish this thing together hep free. I'm pullin for ya! Dale
so tator do you have your issue resolved yet or are you still having problems getting what you need??? tator, last i heard from you, you were still in need of shots...and having a hard time connecting with folks here...please let us know if it worked out tator...
goof/jm/others... is it all settled then??? does tator have her 3 shots??? i could give up my last shot for her but if others are taking care of it then i will hold on to it...
please let me know if it is still needed or not...i have treated so long now i really doubt that i absolutely have to have that last shot... but if others are covering it then i will hang on to it and take it...
i'll check this in the early am so i can get an overnight package sent if i need to.
ps. remember also that mkandrew i believe was trying to help folks in situations get meds...perhaps jm can send it to him and he can get it to you... you could try contacting him too if you can't get what you need here...he may have ideas too...
i'm praying for you tator to get the 3 shots you desprately need to continue with out a hitch...please let us know if you are covered or not... you can email me directly if you want...you have my E-address right? i see snook has something for you, so that's nice... let us know if all is working out so we know what to send you and if you still need it...
i tried the email you posted but i'm not sure it got to you...can you tell me if it did...thanks.
chev, you know anything???
I ditto what NYGIRL and JIM said, there has to be a way. I think it's to soon to pull you off meds. There are alot of options but I find many Dr. don't try, I guess their afraid of law suits if some thing goes wrong.
However, there are many options and you need to tell the Dr. to find a way to keep you on the meds, God knows I did. With all I have been through with my HGB dropping as low as 7.1 and a transfusion I told the Drs. that stopping meds was not an option for me and I was firm. So they found a way and I'm still on full meds.
I think for many Drs. it's an easy way out.
JEZ this is not good I mean curing the hep is one thing bleeding in the brain another - that will kill you way quicker and that's how I'm judging things these days LOL. God knows some of us really don't react well to this Interferon junk.
I would see if there is another doctor who has any ideas. What week are you on now? Maybe you can cut the dosage and see if that helps and then wean back up or something?
I mean if you are UND at this point maybe you could do a maintenance dose and see if that would hold?
I am so sorry - I wish I knew more about this. I'm going to google around at lunch and see if there is any info I can find.
I just refuse to accept it. No way.
I am so sorry to hear this news. I will pray for a good blood test for you. Would a transfusion help you?
I'm so sorry to hear this. Hopefully, a new treatment is on the way that will be easier for your body to handle. Hang in there. Everything will be ok. I think you should come to the support meeting in a couple of weeks.
When my platelets dropped to 70 my doctor said if they got below 50 he would take me off. I am on Pegasys. They dropped real fast the first month or so, then stabled out. Try to get another opinion or see if your doc will monitor it real close for a few weeks.
Tell the doctor Sailin's info maybe it will help by some time while your body adjusts! Anything!
I am so sorry to hear this. I think you have gotten some good advice here. I don't know how easy it is to come by, but I know that they can do platelet transfusions. I don't know any specifics though. I am thinking of you. Please keep us updated!
I'll be brief cause I'm in a hurry. 30 is the worry number for most informed Hepos, unless you have special circunstances. Heck - I've been off tx for 3 weeks and I haven't seen 70 yet. A protime (sp) test checks to see how well your blood is clotting. Neumega is rarely used for us. Neupogen works for WBC in about 24 hours, then the benefit starts to erode. You need to be over 50 in platelets for surgery, not for shaving!
Bottom line? No reason to stop or dose reduce. I was under 50 for 6 mos of tx.
i don't know nothing about this,except sure don't want to see you pulled from a sucessful trx....sounds like doc is being bit too cautious?Don't give up(sure ya won't!!) and be firmly proactive w/ doc......I am Rooting for You!!!
I assume you've gone in for the blood work.
Good grief - we can't have you bleeding in your brain. You don't have anymore cells to lose!!!
I know of a couple other people pulled off meds cause their bodies just couldn't handle it, but I've not known anyone personnally.
I just feel so bad for you Dale. Can we do anything? You can have half my brain....I've haven't been using all of it lately.
READ GOOFY'S POST AND TELL THE DOCTOR (NICELY) TO SHOVE IT YOU AREN'T GOING OFF!!!!!!!!!!!
just wanted you to know i'm pulling for you...
Best of luck, maybe if fishdoc would loan you her pitchfork he just might see it your way.
Messed up my links above. Try again:
Google low platelets for more....
<a href="http://www.clevelandclinicmeded.com/ccjm/april04/george.htm>One article on low platelets</a>.
<a href="http://www.cancerbackup.org.uk/Treatments/Supportivetherapies/Platelettransfusions">Another that says this</a>:
The normal platelet count is between 120 and 400. A slightly lower platelet count will not usually cause any problems, as there are plenty to spare. However, a very low platelet count can sometimes be serious. Signs of a low platelet count include nosebleeds, bleeding gums, heavy periods, bruising and tiny blood spots in the skin (known as petecheia). Very rarely, more serious bleeding (for example, into the brain or the digestive system) can occur.
Serious bleeding is rare if the platelet count is above 10, although it may happen at higher levels (perhaps up to 30) if you also have a high temperature, due to infection. Therefore, it is important that you contact the hospital if you know that your platelets are low and you develop a temperature above 38
Mrs. O: Thanks for the offer to give me the half of your brain not in use. I have space available.
Goof: I'll use your info on Friday when he calls me about today blood work. My doctor is the overly cautious type. I intentionally pick him out because he is reverse to me. (careless)
Beagle: You ever had a day where your ears and nose drug the ground all day.
Chevygal: Thanks for the advice on the drug. I've written it down and will show it to him.
Sunspot: Dana I appreciate the offer of the blood transfusion what day can you be in Memphis with the tubes. This ought to be interesting.
Beamishboy: Hey my friend I appreciate the thoughts and the support all of you have given me. Thanks for putting up with me.
Alady: I was just at the hospital a little while ago and meant to stop by the information desk and get the information on the next group meeting. I will get that done today. Thanks for inviting me.
Sailinlady: That is good to know that you could go down to 50. Same info from Goof so that helps a bunch. I've made it 4 months on treatment and then they dropped. I wonder if the whites could have any affect on Platelets?
Amommy: I don't know about the transfusion thing. Sunspot/ Dana is on the way to Memphis to give it a try. Doctor has told me that in my case that the only thing he could do is cease treatment if they fall to far. At least I have questions to ask now thanks to you guys.
Kalio1: You are right why not reduce the dosage instead of just stopping it. Anything would be better than nothing I would think. Good idea - don't think that would have crossed my pea brain.
Nygirl: Debbie if I keep hitting the wall with my doctor I'm going to have you call him. You make much better arguments on subjects than I do. I may walk in with a fudgecicle and say Debbie said? He might not understand but it would give me a chuckle. Thanks, Dale
Hey there, my platelets were below normal range on 2wk, 4wk blood work, and I go in tomorrow for my 8 wk. Had a tiny cut yesterday that bled like a stuck pig. I am sure draggin,so I am anxious about the results, especially since I only do a monthly...I'm with the others, find a consult, maybe the online hep doc for a second opinion?? good luck,, and best wishes.