Ready to begin triple tx with Inc on 5/25

[Allison1965]

I posted this to a previous link I had, but I was not sure if would come up as a new post, so I decided to re-post here.  Sorry if this was  not the correct way to do this . . .

Well, we found a doctor at the University of Arizona Medical Center in Tucson that was willing to try triple tx with Inc for Gary.  It took all of 5 weeks to get the drugs prescribed and prior auth approved through Medicare.  We received the medications for treatment yesterday . . . a very expensive package!  But we got it!  So at a milestone . . . Gary has been feeling stronger, even though his platelets are still low 80, all other counts have gained to either normal low or normal.  So I guess he is about as healthy as he can be for the beginning of this tx.  He has prepped his skin with lots of lotion over the past week and he continues to drink lots of water.  We registered with the support nurse program through Incivek and with the medicine package we also got some starter kit stuff.  I think we are ready to begin.  The 20g of fat diet we are working on and I am thinking that if I try to keep his diet high in fiber, maybe the diarrhea and irritated hinny may not be so bad . . . but I am going to have on had the supplies that may help.  I noticed the medication Zofran for nausea.  At our appointment on Friday, I plan to ask about that.  

Are there any other items besides baby wipes with Aloe, that anyone suggests we ask for a prescription of or pick up ahead of time?

We have also found a new pcp here in Tucson as our pcp back in Vermont is finding it difficult to help Gary while he is here.  We are also meeting with an endocrinologist in two weeks to help Gary with his diabetes. In fact, the pcp we have now here in Tucson is suggesting an insulin pump for Gary.  I don't know if we could take on something new and complicated the 2nd week into tx.  We will see....

I just wish I had a crystal ball to tell us if this the choice to dive into the triple tx is worth the risks.  Even with 135 dose of peg- and 800 mg of ribo, his blood counts were so low, he needed neopogen and procrit . . . I am worried, but I am ready.  He is ready too, and he wants to "go for it", so we are off and running . . .  

I haven't posted much lately but I do read lots of your posts.  You are all a big inspiration to many with out even realizing it!  Thanks to every one of you for sharing your stories, giving advice, support and suggestions.  It REALLY helps!!  

PEACE~HOPE~TRUST  
Allison

[catmagic0406]

I was just reading your list and wondering about Tylenol.  Isn't that the big "no no" over the counter analgesic for us?  Or maybe it doesn't matter if we're doing tx?  

[angel216]

o yea...the pill organizer is a life saver! but even then yesterday(thursday) i noticed i had taken tuesdays.  Lol!!!  O the brain fog...yikes

[Revalation]

You might want to set some alarm clocks and you phone to remind you
when to take meds until you get in the routine. You don't want to miss any doses and that's real easy to do when first starting.

Reva

[BoceprevirGal]

That must be really hard. But the main goal is for Gary to have a sucessfull Treatment, and having his Diabetes stable is important, concerning that.
   Especially with Incivek, because of the dietary requirements. Good luck!

[Allison1965]

We just got a call from the doc's and they are worried about his diabetes.  Two weeks ago, his sugar levels were hi, 600+, so we have changed his insulin doses and now for the past week his average has been about 250.  So the doc's are deciding if that is good enough to start.  They may want to wait another week and see how his numbers are.  Gary is upset about that, but I know that we need to have him in the best medical condition possible before we start so the success of the treatment is higher. . .  Psychologically, we both we prepared for today, and the thought of putting it off for any length of time is unsettling...  

[1fish2fish]

Like yourself I also put a nice care package together to battle sx. I'm into week 7 and everything still sits on the shelf unused. Stay positive don't hang around and let sx get into your head. Good luck.......

[working dog]

when i was on tx and had to drink lots of water i couldn't get it down in a bottle with a small cap...also i needed room temp water...too cold and i couldn't drink it fast enough to get it down...i bought h2o blue bottles from walmart...they had a large mouth and were easy to get that needed water in me...make sure to take the incivek on time that is so important!...the first shot of interferon was the worse for me...btw...i love vermont i'm driving down 91 today...the back way to ny......beautiful......good luck...have him stay out of the sun!!.....billy

[Allison1965]

Thank you.  I have purchased a 3x's a day 7 day pill box.  The nurse at Incivek support suggested that Gary take his Ribo with the first two doses of Incivek.  Making sure not to take it close to his bed time, as Ribo causes insomnia.  I did not know that and previously, he was taking his second dose of Ribo with his bed time pills!  So that phone call was well worth the time!  He already is taking 11 other pills a day three times a day and we use another pill box for that.  So now there will be two pill boxes, as he is so familiar with the first one, I don't want to take that away.

We are eating a nice dinner tonight, anticipating a poor appetite coming up.  Gary has very bad short term memory, so I have been telling him every day about the sx of these meds.  Reminding him to moisturize and to drink LOTS of water.  We are living in our RV at Lazydays campground in Tucson, AZ.  It is beautiful here and we love the heat!  Vermont was so cold for Gary.  We are right by the pool and the ice maker, so life is good!   Our daughter moved here to go to college and since our original plan was with The Mayo Clinic in Phoenix, we parked here to begin with.  As it has turned out, The Mayo Clinic told us they decided not to treat Gary and suggested we go back to Mass General.  I refused to believe that was our only option and I started calling, asking, searching, talking to our hep doctor back in Vermont and we found a WONDERFUL team right here in Tucson at the U of A.  They are only treating one other post transplant patient, but were willing to work with us to try and help Gary.  It is very scary, but we have hopes that this may help him.  Here we go . . . lol

[WmoMitch]

Good work in preparing so well.  A 7 x 4 compartment pill organizer will also help a lot.  Best.  Wm

[Allison1965]

Thank you so much!  I will jot all that down and take to our appointment tomorrow.  I really appreciate your time.  : )

[pooh55811]

I suggest having the following items on hand when a person starts treatment but be sure to check with your treating doctor before taking them. There may be some reason Gary's doc does not want him to take certain meds, even over the counter meds.

Tylenol (I use 325 mg)  for headache and general muscle aches
Benadryl caps for the rash and itching
Preparation H suppositories
Preparation H hemorrhoid cream
Loperimide tabs for the diarrhea
Huggies baby wipes with aloe (to keep the buttocks extra clean)
Hydrocortisone cream for the rash
Gel type cold pack (this comes in handy for headaches and itching)
Toilet paper, lots of it, LOL.
Hypoallergenic lotion or very mild unscented lotion


If he gets a bad rash the benadryl and the over the counter hydrocortisone cream are probably not going to work very well. (They worked for me when I had a bump here and there, but once I really got a rash, they did nothing.)
I found Hydroxyzine 50 mg every 6 hours to work wonders. It is the only thing that really cleared up the rash and the itching and keeps it controlled. I also used fluocinonide ointment which will work locally, but the rash is caused by a systemic drug reaction so the rash just moves to another spot.  I also used clobetesol soln (for the scalp rash).

Best of luck to both of you.