Anyone have severe side effects for a long time?

[pkhend]

My husband is in his 11th week of treatment and has been very, very sick since beginning treatment.  He's lost almost 30 pounds, is short of breath, nauseated, has chills and has absolutely no appetite.  He's extremely weak and has no energy.  He manages to get up about 10, goes to his chair and stays there all day until bedtime.  Just taking a shower is hard for him.  And this is a man who was always full of energy and could eat anything.  He did have a couple of weeks of almost feeling normal after a spinal epidural for his back pain, but supposedly he had only Fentayl and Bupivacaine in his epidural so that really shouldn't have made a difference in the way he felt ( but something did.)  He's in a Roche trial and had RVR at 4 weeks, has remained UDT, and hopefully will be able to stop tx at 24 weeks, but at this rate I'm not sure he'll make it that long.  He stops taking the trial drugs "X" and "Y" after next week biut continues SOC  .  He's really, really sick. He takes Reglan, Remeron and Phenergan to try to help with the sides.  On top of everything else, he has septic butsitis in this elbow and is scheduled to have surgery tomorrow.  I worry that he is not strong enough for the surgery, but his orthopedic doc said the infected bursa had to be removed.  Has anyone had sides this bad and managed to make it through treatment?  He doesn't want to stop his treatment, but I don't know how much more his body can take.  His hemoglobin was 10.5 last week (15.6 when he started).  His nurse said they don't usually give rescue meds until the hemoglobin drops to around 8.  I think his doctor is considering pulling him from the trial, alhtough we rarely see the doc, just his nurse.
Any help will be most appreciated.
ph

[pkhend]

Pdilly--Thanks for the words of encouragement!  We just didn't expect the sides to be this severe.  He's retired so we are blessed that he doesn't have to go to work, because he wouldn't be able to do so, but I work so he's pretty much on his own all day.  
I'm so happy that you are well and it's good to hear that even with lowered dosages, one can still be SVR!
ph

[pkhend]

Hi newleaf--I'm going to look at the potential side effects of the trial drug in a few minutes!!!  We're hoping that the side effects will lessen after he stops them.  His elbow surgery went well, but the side are still ongoing.  We were hoping that some of the sides were due to the infection in the elbow bursa.  He just came home from the hospital today and has slept most of the afternoon which is to be expected.  I'm trying to be patient, but I think if I hear "You just don't know how bad I feel" one more time, I will scream!!!!  I know I DON'T know how bad he feels, but our personalities are so different--When I'm sick I just want to suffer in silence while he feels the need to tell me every 5 minutes how awful he feels. I've tried being sympathetic, firm but kind, and just plain mean when I completely lose it, but I somethimes just want to say, "Either stop complaining with every breath or stop treatment.  You've got a great chance of SVR, so suck it up and deal with it!!!", but of course, I don't want him to stop.  Most of the time I don't say much because of the "RIba rage", but if only he could hear what I am thinking:)  Thanks so much for the encouragement and hopefully, some of the most severe sides will end with the last of the trial drugs.
ph

[pkhend]

Hi Chemister,
He's trying to hang in there and the prognosis is good. I'm glad you did well .  It's kind of strange that you mention the strong pain killers because he was in the hospital this past Friday and was given morphine for his elbow surgery and felt better while in the hospital.  But unfortunately, the side are back now that the morphine is out of his system.  He does take Roxicodone for his back pain, but it doesn't seem to help with the sides.  Thanks for your encouragement!
ph

[Pdilly]

I got very sick and even had to miss a week of treatment.  Then I had to do 1/2 doses for most of th weeks.  Thank goodness I was SVR and to this day my tests come back good.  It has been 3 years since I have stopped treatment and I still get those yearly test jitters.  Hang in there it is rough.

[newleaf09]

I was very sick after the 6th week and throughout treatment, as bad as you describe.  Thank god I did not have other issues at the time like your husband's back & elbow.  I know it's hard to pile misery on top of misery.  In the Schering Plough trial I was in, it was at the trial doctor's discretion to use procrit and they set their lower hgb limit at 10 and got patients back up to 11.  11 is still pretty miserable but beats 10 by a lot.  

The good news is that your husband only has one more week of the trial drugs.  People in my trial who stopped the trial drug and continued on SOC alone felt a WHOLE lot better after the trial drug was stopped.  Look at the potential side effects for the trial drug (found in your informed consent).  If lowered hemoglobin is a potential side effect, his hemoglobin should rise after the drug is stopped and he will improve a good deal.  He will still be sick but it will be much more bearable.

[chemister]

I was like that in start of the treatment. At week 6 I start to be very ill, and I lose 25 kg in 6 week. I would not stop the Tx because I was a RVR, with very good prognosis.
They put me at the hospital in 4 days with all kind of test, and they start with strong pain killers. After that I went better, I gain back my weight. I believe that the first weeks the body had to find out how the new medication was, and get use of them. These first horror weeks went never back. Try to do something with your doctor’s help. Special if you have good prognoses to fight the virus.

Good Luck.....

[pkhend]

Thanks, nygirl, for the encouragement!  It makes me sooo sad to see him so sick, but I try to be upbeat for him.  I feel better knowing that you made it and am very  happy for you!  He's often grumpy, but I know it's the meds so I don't take it personally. I just want him to be well!  Thanks again for taking the time to write and make me feel better!
ph

[nygirl7]

A lot of people have sides that are this severe - especially since he is now suffering hemolytic anemia.  A drop from 15.6 to 10.5 will cause you to be extremely short of breath and have severe lethargy.

It's too bad they won't let him have procrit until he is down to 8 - that is very severe and will feel like hell to him and is barbaric in my opinion but trials do have all sorts of rules.  One of the drawbacks - you do get to UND quicker and treat shorter but they take away the meds that make it tolerable quite often as they are so restricted.

The anemia will go away once he is done with treatment and he will feel better just getting rid of that in no time.  He can take it - its not forever and many of us were in the same boat and now our hemo's are right back up where they should be.

I treated for 72 weeks - it was hell but I have been cured for 3 years. Fortunately I was able to take the Procrit but my anemia was extremely severe and I was not in a trial.

I'm a baby if I could do it he can too.  He's  very lucky to have someone as understanding as you - believe me many wives do NOT understand at ALL.