do you ever feel like you are on a merry go round? up and down up and down

[jonney4141]

wbc 7.5 platlets 60. THE doctor called me yesterday personally and told me to stop riba immediatly, and to not drive or do any streneous activities???? he wants to talk more on monday and i know this has been going on too long, they should have already come up with game plan... he also said i am at risk for heart attack or strole (makes you feel real good for the week-end? anyways will keep you all informed..

[eureka254]

Hopefully you followed your doc's advice, took it easy, and have the issue resolved satisfactorily by now.  I know it must have been hard to have them pull the Riba, but if it IS your hemoglobin at 7.5, that IS dangerously low, and you'd be surprised how quickly it can drop even further.  

My husband dropped from 8.0 to 7.4 in less than a week, and he was given a blood transfusion, which immediately made him feel 100% better and allowed him to continue the treatment.  He's taking Procrit regularly now to maintain his blood counts, but it didtake Procrit some time to work (my husband responds slowly to procrit and it took close to 4 weeks to kick in with him).  

Hang in there, you have company with you on this merry-go-round.~eureka

[newleaf09]

A stop will bring your numbers up but it's much better to increase the use of procrit than to reduce the riba.  A temporary stop won't hurt your chances, nor will reducing your interferon, but riba needs to stay up at your standard dose if at all possible.  Hope you and your doctor can get everything worked out today.

Procrit causes the bone marrow to produce more hemoglobin cells, which are destroyed by the riba.  It takes a few weeks for the procrit to do it's job and then bang, after about 4 shots, you suddenly feel a whole lot better.  Let us know how you are doing.

[IMstacie]

It must be the hemoglobin, otherwise the dr. wouldn't be concerned about a heart attack.  I think it is a concern when the platelets get low along with the ANC and/or hemoglobin.  Maybe you could talk the dr. into just a reduction with the helper drugs.  Good luck.

[Bill1954]

Wow, Jonney; I wonder if there is a misunderstanding; could it be your hemoglobin is at 7.5? This would support his concerns, if that’s the case. If so, you probably feel like cr@p. They typically transfuse at that point.

Do they give you copies of your labs? This would help us talk about your condition in here a little more efficiently.

If they haven’t offered Procrit /epo yet, it’d be a very good time to discuss this issue; it might keep you from having treatment disruptions like this as well as help you feel better maybe too.

Keep on pulling as best you can, and let us know what you guys decide on Monday. In the meantime, not much you can do but try to relax, and enjoy the weekend as best as possible.

Take care—

Bil

[jonney4141]

no he explained to me, but i usually see his nurse or whatever she is, i have only met him 1 time. my blood has been going down and up up and down, i have had to stop riba and i don't understand why they don't just get me the medicine to help the blood, i am undetectable at 6months and at 3 months gen 1b. i feel comfortable with them what they say jives pretty much with what you all say. for him to call me personelly was not the norm, its always either the pn or her nurse. he said he was going to have someone contact me on monday and then wants more blood work. i really don't understand what is going on but will get to the bottom of this. the nurse called me thursday and told me about the platlets, and then yesterday is when the doctor called and said my blood work was 7.5 which he said is too low.

[Bill1954]

Jonney, did the doctor discuss these concerns with you, or did he simple tell you this without explanation?

There must be other factors for his concern besides the labs you just posted. How is your hemoglobin holding up? This, not WBC or platelets would be the item to watch if they are suggesting holding back ribavirin, I’d think.

Platelets at 60k are low, but by no means in a danger zone for someone who is otherwise healthy.

Do you feel comfortable with your doctor’s expertise in managing your treatment? I know you’ve had trouble with insurance all along; what a shame you continue to fight this.

Let us know how things go—

Bill