Who to tell and help with sides from tx at UAB

[pkhend]

I am so thankful for this forum and for the people who take the time to help others who are with Hep C.   I've only asked a couple of quesitons, but each time several people have responded--what a blessing you are!  My husband is in wk 11 of a clinical trial at (UAB)  University of AL, Birmingham (SOC + trial drug or placebo.)  He's had a VERY tough time--weight loss of 35 pounds, nausea, exteme weakness', fatigue, horrible sinus congestion, no appetite, hemoglobin drop from 14.9 to 10.2, shortness of breath, and dizziness.  He obtained RVR at wk. 4 and will stop trial drugs at wk 12. but continue SOC for 24 or 48 wks depending on which trial group he's in. Here are our questions:  Although he wants to continue treatment, he's so weak he can hardly get out of bed.  The trial allows rescue drugs at the doctor's discretion, but the nurse says they don't usually give Procrit until hemoglobin is around 8 (Yes, 8!) Would you advise him leaving the trial after wk 12 and trying to see another doctor to continue SOC?  I don't even know if another doctor would accept him as a patient under these circumstances.  Secondly, do you have a "recipe" of anything that might he might eat to slow down the weight loss?  He says the very thought of food makes him sick.  Are there meds to increase appetite (he's already on Reglan and Remeron.) Last, he hasn't told anyone about his treatment and doesn't want to do so.  However, all our friends are naturally worried when they see him and keep asking what's wrong.  What do we tell them?  Both of us are very honest people and don't want to lie, but we live in a small town and we feel many people wouldn't understand.  And naturally, I don't want to add rejection by "friends" to the mix of all we're dealing with.  Please just give us some suggestions for any or all our questions if you have any ideas.
God bless!
pk

[pkhend]

Thanks so much for the suggestions and advice!  We've decided to simple tell people he has hemolytic anemia and is undergoing some treatment for that.  He is trying very hard to eat and is existing on whole milk, peanut butter and crackers/toast and occasional milk shakes.  He used to love sweets, but now says they are too sweet.  I finally had to say, "Either you eat or the doc will take you out of the trial." so he's trying very hard, but it's still difficult.  Hopefully, some of the side effects will subside when he drops the two trial drugs after this week and continues with "just" SOC.  We go next Monday for wk 12 bloodwork, so say a prayer that he's still UDT.
Thanks again.
pkhend

[stg088]

There is a medication used for appetite stimulation called Megace.  I have no idea whether it would help with loss of appetite from Hep C treatment.  I've seen Megace used with elderly people - sometimes it works great and sometimes it does nothing.

As others have already said, drinking liquids may be better tolerated when solid foods are not "doable".  Smoothies, milkshakes, etc are possibilities.  Fruit juice, milk, anything with some calories and nutritional value is better than coffee or tea in someone who isn't eating.

Good luck

[orphanedhawk]

We all have a chance to educate people about hep C, that it is not just a disease  affecting drug users. Many people have no idea how they got sick.
What I found once I told people is they replied by telling me of others they knew of with the disease. If people ask how he got it say,it's hard to know but its spread via blood contact. My husband got it from vaccinations at boot camp.

However, you know your town better than I.
You could simply say, your husband has a liver problem and is having bad reactions to the treatment.

As far as his appetite goes, mine was very odd during tx. I lost weight until a friend brought me a cheesecake for my birthday. I tasted one piece and couldn't stop. I ate the whole cake. For one month I ate a cheese cake a week and gained weight. Normally I eat one small piece a year!
My point is, anything you can get him to eat is better than  nothing.

You also may have to get tough with him. Tell him to think of food as medicine. He HAS to eat!!

If he won't eat, will he drink?
How about fruit smoothies? Put fruit in a blender, add flax meal ( its very fattening and healthy) add whole milk yogurt, and blend. Pour to drink.

What about homemade soups?  Boil chicken add vegies and pasta. Serve with garlic bread.  

Good luck,
OH

[can-do-man]

Sorry to hear about your husbands sides, i had alot of those in my first tx. My doctor suggested ice cream, (malts and shakes) and also fruit smoothies using real ice cream and high fat milk..... They were a life saver for me.

I think i would ask to speak to the doctor about procrit, sometime you need to go over the nurses head. Letting it drop to 8 is just unreal plus it takes some time for it to kick in.

I can understand you not wanting to tell everybody. Hang in there things will get better and before you know it will be over........ Wishing you both the very best.

cando

[nygirl7]

Many of us have said we were on chemo (because it's true) but it sounds like you have some very nosey people and they'd say "what kind of cancer does he have" (I always just said Oh I don't like to talk about it but once in a while someone would insist - that would make me angry).  Perhaps you can say he has hemolytic anemia - since he does and they won't know exactly what it is...and it would cause the lethargy, weight loss, shortness of breath all that stuff?

You do have to use a lot of wisdom in deciding on who to tell and not tell.  And really it's nobodies business.  You learn how quickly that doesn't matter once you are on treatment people can be down right rude.  Personally I only told my direct bosses and my family really to start. Now I don't care anymore but this is well after 5 years and I am cured.

Like I said before 8 is barbaric.  Just barbaric.  I don't have any brilliant answers for these questions, I wish I did.  One of my doctors did tell me that if I lost too much weight (I was very skinny to start so they worried about it endlessly so I gainned a bit before I started) that there were antidepressent type meds that actually cause weight gain and they could put me on one of them.  I looked like a skeleton but really didn't care - eventually all the weight came back after treatment. But that might be something to look into. I don't know anything except pot that might stimulate his appetite - but you already said that was not an option.

As for continuing unfortunately that is something only you both can decide - but I wouldn't ever want to have to start over and go through this again from the beginning and then longer. Plus - I do'nt believe at this stage he could get the PI trial drug again...youd have to wait for FDA approval and nobody honestly knows when that will be.  All of it is a guess as to if and when they get to market.

Good luck PK.