Factors surrounding transfusions?

[GrandOak]

The thought of undergoing transfusions as a part of tx is a bit unnerving for me right now.  Considering that several here have gone through this, and it probably has or was old hat by now, I was wondering if you might share more about this procedure?

For instance, are there things one should be doing/considering in preparation for it?

What kind of post procedure sx's can one expect to experience?

How long did post sx's last?

Do anemia and/or neutropenia sx's go away or lessen in severity following the procedure?

How long before anemic/neutropenic sx's return?

If performed multiple times, what was the frequency that procedure was used?

It would be interesting to see personal experience responses and see if like IFN/Riba tx that sx's differ from person to person.

[DougV]

Tried calling FDA, managed nothing but did get email address so have sent question that way.  Not going to hold my breath.  Mr. Beagle I didn't get around to calling Valeant today, please let me know if you hear something via email.

Did get a note from someone who was participating in Scherring's clinical trial over on Hepatitis Neighborhood.  She was undetectable at week 8, week 12 VL back up, even higher at week 16 and they pulled her off the study.

Should anyone want to read it link to message is as follows:

http://www.hepatitisneighborhood.com/boards/ShowPost.aspx?PostID=75253

Probably have to join to read it?????

Doug

[sfbaygirl]

Split pea soup is great! Geez, you have been through the wringer, I can see why you would want a break. I liked reading your long story, and posts.

I had cataract surgery years ago. It's wonderful to see again! As far as the teeth, I had to crack up because one of my mantras when I was single was that I didn't want some old man's teeth on my bedstand! Implants, while expensive, sound great. I have a few bridges and hope my teeth don't fall out on tx! I have a younger husband and I am sure he doesn't want some ol' ladies teeth on his bedstand either! LOL

With all that great stuff you cook, why not use the cuisinart and blend up your dinners? That's what I used to do for my babies.

[Mister beagle bailey]

LOL, I'm right behind you.


Beagle

[DougV]

Don't count on being first on the list, second maybe, but not first. <grin>

Doug

[DougV]

Oh, I understand and thanks for the thought.  I actually could afford to handle the costs if I had to, and maybe I should have.  I just completed my first round of tx in late January this year.  (48 weeks pegintron/RIBA) and showed replapse on 12 week post PCR.  That was in late March.  I culd have gotten immediately into a Phase I study that was going on in Tampa but neither my doctor nor I felt the product had a snowballs chance in well you know where of succeeding.  (It didn't.)  I could have also gotten into Scherring's Maintenance study, Phase III.  As of Nov. 04 my liver state was 3/3.  However treatment hit my body pretty hard, I never felt bad though, I was anemic to the point of needing two transfusions and staying on the bubble of needing more virtually the entire time.  Minor scratches would literally take weeks to heal, bruises months.  My teeth are now shot and I need cornea TP in both eyes as well as cataract surgery in both eyes.  Dentist did not believe my teeth could handle another round.  So I decided to take a year break in treatment in order to allow my body to heal and to get as many non-critical issues dealt with as possible.  I'm sitting here now feeling like the toothless wonder, 12 teeth removed Monday and pretty sick of eating soup until I can get partials put in this coming Monday.  (Now tell me, what dang kind of blenderized soup tastes good for breakfast?)  I'll be doing major periodontal work for the next three months starting in two weeks.  Go to get scheduled for eye surgery in two weeks, hopefully one eye will be done in early October and the next in November.  Due to that I may postpone until Feb or even March.  If I can wait that long perhaps I can sneak in getting at least some implants done before I do tx again, otherwise I guess I'll have to live with partials until then.  I know it is really stupid on my part, but in all seriousness, only one thing has ever made me feel like I'm getting old and that's store bought teeth.  And odd as it may seem getting implants so the dang things ain't removable is a major thing to me.  I just do not want to pass from this world without teeth firmly affixed to my head.  Hey spiders and snakes don't bother me, but removable teeth do.  Shows you can't pick your neurosis, huh?

That added to my insurance (I pay my own for me and my family, man that stuff ain't cheap.) has a max out of pocket on prescription costs of $2500 per annum.  By at least ordering the meds no later then the 1st of Feb I can fit all 48 weeks in one calender year which saves me quiet a bit of money.  Really not significant in the scheme of things but I can think of better things to spend money on.  (I keep hearing a sports car call my name.)

Finally I also intentionally planned on seeing what happens at year end with the new drugs in development.  I'd love a shot at a clinical trial with Vertex for relapsers and non-responders and they keep assuring me that's going to happen either later this year or early next.  Being in combo with RIBA scares me as I don't know if a clincial trial doc will allow me to be as aggressive in terms of keeping blood chemistry adequate for life and I sure would not want to be kicked off.

Anyway, sorry, more info I'm sure then you wanted.  Even though I'm knew on this site you may have already noticed I can be pretty long typed.  Besides I need to start phone calls as soon as my wife releases control of the phone.

Oh and hold off on dinner to at least next week, as my teeth are late I'll probably not do as much this week as I refuse to watch someone eating prime rib while I drink my soup from a cup. <grin>

And again, thanks for thinking of me.

Doug

[Mister beagle bailey]

LOL night of the living dead, we could have all been in that movie and it wouldn't be acting. It would have help to pay for our tx.
I just e-mailed valeant Pharm, for info on their next trial.

Beagle

[sfbaygirl]

Hey, but you will have to get your beagle Halloween costume out. You won't be able to look like the Night of the Living Dead, at least naturally! LOL

[Mister beagle bailey]

Doug thanks for the web sites, I will go on it later to see what I can find out.  If you here of a trial using viramidine let me know because I'm game.
Yes, if the new drug is not FDA approved the ins co will not pay for it, however I was told that the FDA will be approving viramidine(Taribavirin) and it should be ready for treatment as early as 2007.  Ans you know I 'll be first on the list.

Beagle

[DougV]

Got an off the wall ideal for you.

Viramidine aka Taribavirin has completed Phase III in both Europe and the US.  I know it's not yet for sale and that won't happen until sometime next year, and I also note is was not as effective as RIBA, but also tests weren't weight based so that possibly could be adapted.

So the off the wall idea is apply for special exemption with the FDA, which having already passed Phase III should not be a problem.  I'm not sure of the process but I bet your doctor would know considering his expertise.  He could almost certainly calculate the proper dose for your weight.  Very possibly could eliminate the anemia totally.

Just a thought.

Doug

[sfbaygirl]

Great idea! There are several people that can't tolerate the Riba on the forum. Beagle went through many transfusions and had a really low Hgb the whole time. He just relapsed. He was talking about this drug the other day. I didn't realize the FDA would do this!

[sfbaygirl]

Have you thought about that idea of getting a waiver from the FDA to start sooner? Perhaps you like the idea of a rest, I sure would, but thought that was an interesting idea.....Geez, I said idea 4 times...will my spelling, grammar ever come back?  LOL

[DougV]

Here's Valeant's Customer service phone number:
1-800-556-1937  5:00am-5:00pm PST. Website in case someone wants it:  http://www.valeant.com/contactUs/index.jspf. They use the name Taribavirin.  I'll try and give them a around 1:00 EST hoping that is after someone who might actually know something will be in and post-morning coffee and see what they can tell me.  Another possibility is that it is already available in another country in which case it could be pretty easy to get, unless of course it is sold currently only in Iraq.

A research doc might be able to get supplies too.  My doc doesn't do research but might be another end around that way.

FDA exemption may be called Hardship exemption.  Anyone know an oncologist?  They may know something as well.  I'll try and call the FDA tomorrow too, 1-888-463-6332 or 301-827-4570 8:00am -4:30pm.  I've checked their website but can't find anything.  I dunno, maybe it's not done anymore, but if it is out anywhere in any country there's a way to get it.

I'm looking as I plan on doing tx again this January, due to insurance and their max out of pocket in one year routine.  I know anemia will be coming almost immediately and sure want to avoid it.  I'd sure go for VX-950, Viramidine, and IFN.

Say, another question, anyone been on a clinical trial and do they allow the use or Procrit or will they stop at first sign of trouble?

Stupid thought, but I wish there was a hep site specifically for non-responders, relapsers, and for those whose liver is say 3/2 or worse.  In other words only for us desperate folks.

Doug

[sfbaygirl]

That's really nice of you to make those calls!

Can you get on tx drugs through Committment to Care? I know many here, even with insurance, get the drugs free. I sure couldn't imagine having to pay for the drugs myself. I am on Cobra and it will hopefully get me through tx. We are going to have to look for a high risk policy soon to cover us when cobra ends.

There seem to be so few good hep sites. I dunno, maybe I am biased! LOL There do seem to be lots of relapsers, non-responders that post here.

[sfbaygirl]

I forget who it was who was going to get a transfusion and then the procrit if the Hgb went down too low. But if you were at 9+ and got a transfusion you would feel better immediately, and then wait for the procrit to come and give the shot etc. That is what I meant by that.

I agree, I am amazed at how much suffering people go through getting down to 9 before getting the procrit. Luckily my dr. gives it to me at 11+ and has since the beginning. That first was the worst b/c of the 5 pt drop. Now I am at 12 and FINE (f'ed up, insecure, needy and emotional) LOL. No I can handle it much better, I think. Of course it is all relative to all the other sx. I think people should carry that study you refer to their docs and make them listen. It is ridiculous!

[Mister beagle bailey]

Yes, viramidine is suppose to be out next year and my doctor is very excited about it as it doesn't bring down the HGB like riba does.  This would allow people like me treat longer on tx without possibly having to take procrit or do trandfusions.  As it stands now, I can't retreat because of my HGB being so low.  Doc said my body could not take it again so I have to wait for newer  drugs.  From what I've read this drug looks very promising.

Beagle

[sfbaygirl]

That is such good news that it (haven't learned to spell it yet) is here! At least you can spend the holidays without feeling like a truck ran over you. There are some positives here...You being stage 0, you won't have any problem waiting until 2007, liver wise.

[Mister beagle bailey]

Yes, this is good news and I have know problem waiting till 2007, but I'm going to try and get myself in a trial.  Will look on the site tinight.

Beagle

[DougV]

Not sure about committment to care, but until actual FDA approval it cannot be SOLD.  So if there is a way to get it the costs should be nothing.  That's why if someone has an in through a research doctor that might be the easiest way.

Doug

[sfbaygirl]

sorry for the confusion again. I was talking about YOU getting tx drugs from Committment to Care, so you could start before January. I'm not sure you want to, but it is just a thought.

You can get Inf/Riba free if you make less than $70,000. a year, I hear. Also there is a plan for rescue drugs.

That does bring up a good point, if the drug is not FDA approved would any ins. pay for Virdramine? Perhaps that company would give it for free.

[cuteus]

it does make sense to do the transfusion first if they let the hgb drop too low. What gets me is that they don't have to wait until you are in the danger zone, they could start the procrit before you hit 10 or 11, (they do it at 12 in some studies) and that way the person does not have to get too low. but if it is someone for whom epo is not working, that is another story. I agree with NYG, I would not have made it without Procrit...and Vicoprofen.

[jmjm530]

If the doctor walks in wearing a long, black cape. Run :)

[cuteus]

I don't believe transfusions help with Neutropenia as it is mostly red cells.

[DougV]

Howdy again.

Most important thing to do is take a book, CD player, or whatever, it takes awhile.  No asprin or blood thinners, Vit E, garlic, or whatever 10 days prior although at stage 4 I assume that's not an issue.

Here's the routine.  Usually done at hospital in a room they keep set up for walk in IV med injections.  They may take blood the first time to type and match before sending up up.  Once they type and match they'll insert the line and flush with saline.  Normal routine is then to wait and wait a little more, until they manage to find somebody to bring up a unit of packed RBC.  Hook up and slow drip.  Takes about an hour and a half, much depending on your veins and what they can take.  At least at the hospital I was in I was free to wander around just as long as I carried my friend, the RV bag and it's spiffy wheeled cart.  When it's done it's done.  You will immediately notice a change in skin color, say within 30 mintues or so, and has you suffer symptoms of anemia should notice an improvement in symptons within no more then two hours.  I spent much of my time going outside smoking or hitting the resturant where they often had fresh baked cookies going.  (No butt exposing hosptil gown required.)

Only prep needed is let HGB hit 7.0.

Only possible sx's post would be rejection but that is extremely rare.  As to what that entails I don't know, I think initial symtom is rash and it is apparently not hard to deal with, but again I am uncertain there, they told me but I ignored them.

As to how long before sx, depends on two many factors to guess.  Your weight, how high you rebound (ranges from 4.0 to 2.0 increase in HGB average, for me right around 2 and I weighed at the tiem 190, FWIW.  Also depends if Procrit starts to take effect which can delay fall or eliminate it as it did after number 2 for me.

For me and the couple other people I know that had it done, lasted for me 1 month, for a couple others six weeks to two months.  After the first time they will check to see if you have developed antibodies to the blood type and match they use.  That never happened to me but it does happen.  Not to worry there is a work around but I am unsure what it is.  Didn't ever seem to be a big concern for the techs though.

If you are like me you'll be both nervous and looking forward to it.  If you have subsequent ones you'll only look forward to them.

Obviously it is not without risk.  Remember it was one of the more common ways to get hep.  However blood supplies are screened well and if something pops up 30 years from now as a result, well I'll have then celebrated my 52nd 29th birthday and don't think I'll give a dang.

Oh, I drove myself there and drove myself home.  Can't say I enjoyed it but I sure enjoyed the aftereffects.

Doug

[NYgirl]

you know all they do is put in an IV line and then hook up a bag of blood right?  It's not a big procedure or anything...you won't even know it's going on when it does if you don't look.

At least it would be a WAY faster way to get the hgbs up initially rather than wait for Epo or Procrit.  To me it's not GETTING the anemia that is the bad part it's the waiting to get to the doctor to get the script approved to have it come in to THEN waiting 2 - 6 weeks for it to work that killed me.

But I thank GOD they did make Procrit...I honestly couldn't have stayed on tx without it.