Tx ends for me after 9 wks

[NorthIdaho54]

My body and mind fought a good fight but after a month of "complications" from tx I finally had to throw in the towel.
.
I had a 2-wk drop in HGB from 9.2 to 7.5 and platelets went from 68 to 31 (also within 2 wks).
I found myself in the hospital having blood transfusions last Satruday with no contact or input from my GI doc (I'm not pointing fingers, it was a total breakdown of communication on all levels).

So I'm just here to say I intend to take this time to build up my stength, spirit, knowledge and finances (yep, I'm the one without insurance that thought I could do the "out of pocket" thing).

I feel I went willy nilly into tx without knowing a thing about Hep C let alone tx. I didn't even find this forum until the night before my 1st injection.

So bear with me if I ask questions in the coming months that seem very basic but I intend to use every bit of knowledge this forum has to offer before I attempt tx again.  

Thank you Bill and Pam for all the moral support through the week.

Rhonda

[can-do-man]

Hang in there, you will beat this........ Heres a link for getting free procrit, they are very easy to work with.......... Also theres ways to get the tx drugs paid for...... Best to you.

http://www.procritline.com/

Cando

[eureka254]

Please do report back when you fire your current doc... I would very much enjoy hearing about the satisfaction you get when you give him the aforementioned finger.  ;)  I hope your new GI is more informative and more attentive than this most recent.  Really glad you checked yourself into the ER.  

Can't offer much info in regards to assistance programs, but there are a number of folks with some knowledge about that and they'll hopefully chime in.

Considering your drop in hgb and plts so early in treatment, I would definitely pursue very close follow-up the next round -- when hgb dips below 10 and plts below 90, you should be getting CBCs weekly as to try and head off what you experienced.  Also, it might be a consideration to change Pegs since your had minimal response at 4 weeks.  Just a few thoughts to add to the mix... hope things improve for you from this point forward! ~eureka

[NorthIdaho54]

Both Procrit and transfusions was discused (with my nurse) as a possibility when my hgb dropped but I was waiting for some kind of direction from my GI doc. By Friday night my heart starting doing flip flops, I panicked and checked myself into the hospital the next morning to have the transfusions.

"There are financial assistance programs that you may qualify for".

I would love to learn more about these financial assistance programs, please PM me.

In North Idaho from the info I've gathered, you need to be an unemployed or homeless family, mentally ill, or currently an alcoholic and/or drug addict and unable to work. I'm not denying that all these people need help, AND I DON'T WANT THIS THREAD TO BECOME A POLITICAL ISSUE, but when I read in the local newspaper that a few people are using their cards in cash machines to bail people out of jail, well, I just kind of lost it.  

"I'd be happy to help you look or you could try clinicaltrials.gov and search hcv and the area you live in".

I would love the help in finding a clinical trial. Keep in mind I live in North Idaho and Spokane, Washington is the nearest city but I'd be more than willing to travel to Seattle (6hr drive) or Boise, ID (8 hr drive) as long as I could have my weekly labs done locally.

I have 3 state university's within a 3 hr drive of Post Falls but to my knowledge none of them have medical facilities that could offer clinical trials - But I could be wrong!

Thanks in advance for your support. - Rhonda  

[Anne1717]

Well let's hope for that !

[NorthIdaho54]

Theres always that chance that the most recent labs could show VL as UND. If they are will I kick myself in the butt for stopping tx? Nope. I will however be jumping for joy!

Bill,
I'm putting a bicycle (sans training wheels) on my list of things to buy, I even think I could make it around the block now.

Rhonda

[Anne1717]

Sorry, I was just hoping after 9 weeks you had a chance of beating it.  Well, get em next time!!

Best to you,  Anne

[spectda]

Sorry to hear that it didn't go well.

Next time besides finding a doc that will work with you it would be a good idea if you were able to use procrit when you hgb dropped. There are financial  assistance programs that you may qualify for. The platelets are another issue. It is possible that they would have improved on their own, but if they didn't your interferon would have to be lowered which doesn't appear to be a good idea based on your response this time.

Another thought is to find a trial that would accept you where the protocol does not include interferon but does include riba. It may be a long shot since you stopped because of your reaction to the meds, but I think it would be worth looking into.

I'd be happy to help you look or you could try clinicaltrials.gov and search hcv and the area you live in.

- Dave

[NorthIdaho54]

"Just out of naive curiousity, if you were und at the time you stopped tx,  is there ANY chance of clearing after 9 weeks?"

I'm thinking the chances for me are pretty low, at week 4 my VL only dropped from 5.9 to 5.2.
I had my after care labs done Friday which will included a new VL test so I'll know more by Tuesday.

There are many on this forum that had minimal drops in VL in their 4 wk but came back und at wk 12.

Rhonda

[spectda]

"Just out of naive curiousity, if you were und at the time you stopped tx,  is there ANY chance of clearing after 9 weeks? "

Anything is possible and it has happened but extremely unlikely, especially since Rhonda had a .75 log drop at week 4 and was not undetectable

- Dave

[Bill1954]

Anne-- I think it’s a valid point, and certainly worth checking on.

There’s a guy in our local HCV group who was genotype 1, received a transplant and started treatment a year later. He was intolerant of the treatment drugs and stormed down to his doctor’s office one day, telling them, “you can have these damn drugs back and if you need it, you can take the liver back too, I’m f_cking done with this stuff!”

That was in 2004, he’s still got his liver, and has been SVR since then. This despite cellcept, prednisone, and whatever other antirejection drugs he was taking at the time.

There have been other cases of successful short term interferon therapy too, so while it’s certainly unusual, it’s something to follow up on later, for sure.

-Bill


Rhonda-

I think this took courage but was probably the best choice; especially considering the upcoming options that should soon avail themselves. Trish hit the nail on the head; next time the training wheels come off the bike, and you’ll go around the block by yourself :0)!

Take care,

Bill

[NorthIdaho54]

Thanks for your input Will.

I figure even though I'm at grade 3, stage 3 1/2 I have at least a year to collect enough information for my next plan of attack. By then the protease inhibitors should well be on the market.

I want to be able to "suggest" to my next doc which drugs in combo with SOC might increase my odds of clearing and have articles and info to back it up.

By the way I'm feeling stronger and better everyday - its wonderful not to feel like I'm encased in cement from the neck down with my head somewhere in the clouds.
-Rhonda

[Anne1717]

Just out of naive curiousity, if you were und at the time you stopped tx,  is there ANY chance of clearing after 9 weeks?  

[willbb]

Hi Rhonda...Sorry to hear about your rough go of it on treatment and the experience with your G.I.
   Just  like to say there are a number of us here who have been on a trial run(as Trish so succinctly puts it) because of one reason or another so you aren't alone in that respect.

  Hope you are feeling better soon and  wishing you better luck on the next go around.

WILL



  

[NorthIdaho54]

As far as the GI doc goes, hum-how can I put this.

All week I've envisioned me face to face with him so I could point my finger in his chest and in Donald Trump fashion scream "YOUR FIRED" but he still hasn't contacted me so I haven't had the pleasure.

I'm still in contact with my tx nurse and she is ordering the lab work for aftercare, I just want to say that she was great and she went as far as to call Pegasys to confer with them about some of my sx.

I'll be jumping the border to Washington to find my next GI after I get all my ducks in a row and find a way to get insurance.

Very nice way of putting it Trish - I like the trial run comment!

[Trish77]

Hi Rhonda,

I'm sorry things were so rough for you.  However, I think you've made a really smart decision to stop, step back and go at this differently with what you know now from your "trial run".  A rough 9 weeks but valuable for preparing you for running the actual race, from the sounds of your comments.  

As for questions...I think we all asked basic questions when we first arrived. :)  

Smart to gather as much knowledge as you can for the next round and even to assess if the GI you have is the one you want for next time.

Take good care of yourself to recover from this trial run.  Wish you the best going forward, Rhonda.

Trish