Husband on triple therapy (incivek) first time week 3

[Elphie72]

Hello everyone. My husband started treatment 3 weeks ago (takes fourth shot tomorrow). He is geno type 1a, stage 1, c/t, viral load 6,000,000.   We are both very optimistic this will work. I have been reading the posts daily and have found a wealth of information. Thank you!  My husband keeps a lot inside and acts like everything is fine. He is an arborist so he is does very physical work. He works 6 days a week and won't call out.  I'm really worried about him. He swears he will take time off it he needs it, but working keeps his mind off it. He did admit he was short of breath working last week and heart was racing. His doctor is wonderful...I called because was worried about shortness of breath. They told me his labs from about a week ago showed he was beginning to become anemic. He had a drop but was within normal range still. He was scheduled for more bloodwork in a few days, but they had him go right away. That was two days ago so waiting on results. Doctor also wants do do an EKG to be safe. The loss of appetite and nauseau are his biggest complaints (when he complains). He is thin already and lost 8 lbs. He doesn't take anti nauseau because didn't work first time he tried and he thinks more pills in his stomach will make him more nauseous. I wanted to know if anyone had suggestions for the nauseau.  He seems to have good moments and bad moments. Last sat was worse, he had chills and aches and slept on couch all night after work. I didn't want to wake him to come to bed because I was so glad he was sleeping and getting rest. Sorry for being all over the place, just typing as I think. I work in the evening so he is home with our toddler at night. We have a lot of help from his mom, but he really only has her for an hour or so before she goes to bed. We actually have a trip to disney world planned in may. I told him we should cancel but he insists on going (had planned before treatment).  I dont think we should go but he said he could rest in hotel if he feels bad.  The trip is in his 11th week. He'll only have one more week of incivek then. Next week big day, week four labs!  Boy it felt good just to type all that. Thanks again for all the support I get in just reading the posts. I love my husband very much and wish I could help him more. I'll take any suggestions!  

[Elphie72]

Thanks pooh so much!  It took a few days of me trying, but I finally talked my husband into taking the zofran every 8 hrs to get into his system. After a few days it is like night and day. He is able to eat more because the nausea is so much better. He actually cleared his plate at dinner tonight.  Our weekend was semi normal. I'll post when we get his week four labs!  

[pooh55811]

I take the Zofran in the morning about an hour or two before I eat and take the pills at 6 am. This is easy for me because I am always up to the bathroom at night anyway, and with the 4 gallons of water I was drinking every day, I was really up a lot (still am, lol).

However, if he does not wake up an hour before he eats in the am then I would take the Zofran the minute I got up, even before starting to prepare the food.

Then I space the pills about every 8 hours during the day and eve.

I take the Zofran on schedule, whether I feel nauseated or not. Zofran works to prohibit the production of the chemical that causes the nausea, so you don't want to wait until that chemical has already been produced. You want to prevent it from being produced.

For me, I always have a slight underlying nausea, even with the Zofran (but it was really bad before I had the Zofran). (Before the Zofran I had major nausea and major abdominal bloating and some vomiting.) I can tell if I have forgotten to take the mid-day dose because eventually I start feeling more nauseated.


How does Zofran work?

"Nausea (upset stomach) and vomiting are complex processes involving many chemicals in the body and several parts of the body, including the brain and the small intestine.

It is likely that Zofran works in the small intestine, but it may also work in the brain. The medication blocks serotonin, a chemical produced by the body that is associated with nausea and vomiting. Serotonin has many effects in the body and has several receptors where it can bind. Zofran blocks serotonin at a specific type of receptor (the 5-HT3 receptor)."

http://cancer.emedtv.com/zofran/zofran.html


So you can see that it is best to take it as a preventative and not to wait until after he is already nauseated. Once he is on it for a few doses he should feel better and less nauseated. It does not have to be taken with food.

Of course, Zofran does not work for everyone, so if he takes it every 8 hours or however the doctor prescribed it and he is still nauseated, then he may need a different medication.


There is another thing he needs to be aware of. Many or most of us have found that, while on these meds, we have to eat whether we want to or not, even if it is a small snack. We have found that if we go too long without food, that will cause more nausea. I know it sounds strange, but that is what many of us have noticed. The eating schedule is weird on treatment because you have all of these close together eating times and a big gap between 6 am and 2 pm. I found that by 11 or 12 if I did not eat a little something I got nauseated, even on the Zofran, whereas if I ate just a little something to tide me over until the 2 pm food, the nausea dissipated.

[frijole]

Elphie
Pooh gave you good advice about the nausea.  I have not experienced that but I am on Victrelis.  I think you are right -- your husband is an excellent candidate for clearing with this new triple therapy.  But it is hard on us, for sure.  

So your hubby is treating with a GI but they do have hepatologists available?  Just be careful about the hemoglobin.  It is hard to get back to a decent quality of life, if it drops too low.

bean

[Elphie72]

I forgot to add that he goes to a GI.  They have a liver center.  He was diagnosed about 2 years ago.  Biopsy was last year.  We decided to treat now because he is only stage 1, but his liver enzymes are high.  The doctor told us how good the third drug is working for people.  He thought he would be a good candidate, so he went for it.  Hopefully he will be und at week 4 and going forward!  

[Elphie72]

Thank you so much for everyone's comments.  It really helps.  I tried finding the ginger candy at stop and shop (grocery chain here in northeast) but they didn't have it. I was going to check Walmart, they have everything lol.  I checked my husbands anti nauseau meds (ondansetron) checked online and says generic zofran.  My husband wants to know if he needs to take it with food?  He struggles with the fat intake with incivek as it is.  Never had much of an appetite (think from hep c) and now has no appetite.  Also, should he take every 8 hours or just when he feels nauseaus...well that's all the time.    

We are going to wait until 10 days before Disney trip.  We could cancel up til then...he wants to wait and see how he feels.

Thanks again to everyone!  And good luck to all going through this treatment!

[crigger]

Week 11 was a rough week. I could not do Disney. I would have kick Chip and Dales butt if they laid a hand on me. I would postpone the trip or you and the kids go without him.If he feels this bad at three weeks he is not going to feel better at 11 wks. My husband and I were hd a trip scheduled to go to colorado to ski .  HE went and I stayed home. It was kind of nice to have the house to myself.   Hang in there.

[frijole]

Wow - up on ladders.  Your husband needs to watch this shortness of breath very very closely.  This could be dangerous for an arborist.

Make sure you get copies of all the bloodwork that has been done and the one done this week.  Normally a man's hemoglobin (HGB on the labwork) will be about 14-17.  It sounds like his is dropping pretty fast. Do not just rely on a doctor's saying he is getting anemic.  Ask for help quickly.  How experienced is the doctor?  GI or hepatologist?.  If his hemoglobin is in the 10s already, ask the doctor to get insurance approval for procrit.  He may want to dose reduce the riba but you need to be UND first, so wait until you get that first 4-week vl test back.  

I think he has an excellent chance at clearing the virus, but don't let the anemia take over.  I find that the doctors want to play it out and push for doing nothing since the Incevik is only taken for 12 weeks.  Please don't let them do this.  With me, the procrit is taking about 4 weeks to start bringing up my hemoglobin.  For some people is is less time, but be aware of how long it may take.  Ribavirin reduction is fairly quick and I have had to do that too, but I (and this is only my personal opinion) hate to reduce a treatment drug

And welcome to the forum to both of you.  If you click on my profile and go to pictures, I have been keeping stats of members since about last summer with the PIs were approved.

frijole (bean)

[stormy456]

Hi and Welcome!  My husband is on week 16 of triple with INC, and beside some occasional glitches, he's done fairly well.  We actually attempted Disneyland during Week 11, which was a mistake.  The crowds, the energy and all of the walking were really a drag for my husband, and he ended up in the hotel room for most of the 2 days we were there.  Rides were out of the question because of the nausea.  I'm sure he'd be happy to talk to your husband, but it definitely wasn't our best vacation.

You'll get lots of advice here for the nausea, our favorite was candied ginger.  He did end of needing to take Zofran for about a week toward the end of the first 12 weeks.  Once he ended the INC, the nausea completely went away.