ChristinaMarie

This is the sister in law of a good friend of mine. I really HATE this disease!!!!

My husband had bad lesions on his scalp from Tarceva...A rag dipped in Domeboro and warm water solution really seemed to help. Another thought though it seems minor... many pillowcases were ruined from when some of his lesions would start bleeding at night (they bled a lot of blood) so I bought white pillow cases so I could bleach them. This may not happen to you but I thought I would throw that in there... I know you travel a lot so its something to think about if you stay in hotels. What really seemed to aggrivate his rash was sun exposure even in small amounts. Otherwise I think you have your bases covered. I wish you much luck with Tarceva... My husband actually felt pretty good on it, much better than he felt on Alimta.

I am so very sorry to hear this.

Thats a great idea... I probably bought the book already though, based on your recommendation! Is it "Seven choices...finding daylight after loss shatters your world"? I have been reading it and I really like it so far. I like the Choices I am having to make, it makes me feel proactive about my grieving.

I am so sorry to read this... I had been following her blog and was dreading this news

after 16 months. His cancer took a turn for the worst, spreading into his spinal fluid. He was dizzy and always vomiting everytime he stood up. He was also in a lot of pain. He was in the hospital all last week only to come home for the weekend and go right back in on Monday. I am lost. I have not hit rock bottom yet so to speak, I am still in funeral planning mode. Ask me in a few weeks when I finally work up the nerve to return his Christmas presents. I don't know what to do with myself. I am 28 years old and a widow now. I have yet to go to my house. I am staying at my inlaws right now. Not to mention this big snow storm is preventing most of my family from coming up for the funeral. OF COURSE this would happen, that is the way my life rolls lately...

I am so very sorry for your loss.

I wouldn't be so quick to judge "shrinks".... I see a counselor and she doesn't even have authority to prescribe anything but she has been the best thing for me. It sounds hokey but sometimes it really is better just to have someone to talk to, to let you know what you are going through is normal. My counselor has been an angel to me. Find one that is right for you. And, be easy on yourself. Like you said, its only been 29 days....

Gosh, Michelle, I am so very sorry to hear this news. I will keep you and your family in my thoughts and prayers.

Congrats on your good new Bruce!!!

Im a caregiver, but my husband was diagnosed 14 months ago yesterday with stage IV with mets to the bone and later devloped liver mets. We recently received a good scan and for the most part my husband's quality of life has been great. He's got a nasty rash still, but that is not stopping him from doing anything.

I am so sorry to hear this. Sandra was the first person to reply to my first post here when this whole nightmare began. I hope she is finally pain free now and I will keep her family in my thoughts and prayers.

Ditto Ned. Thats why its so important to have all your prescriptions filled at one pharmacy, too. I use to use 2 different pharmacies, one near work and one near home, I try to just use one now.

Hi! My husband was also a non-smoker, diagnosed at 39. Unfortunately there are a lot more of us out there than people like to believe. Good luck with this, I am glad you found us, these folks are a great bunch! Christie

I am so saddened by this news. My heart goes out to her family.

I am just wondering if anyone here is considering getting this vaccine. We got the regular flu shot last year and will probably do it again this year, and the Oncologist is recommending the swine flu vaccine when its available for my husband. If you are getting the vaccine, will your spouse receive it also (or vice versa if you are the caregiver)?

Thanks for the replies. His is already on Minocycline and uses clyndamycin... He says the clyndamycin feels like it almost irritates the rash even more. I will see about trying that Domeboro to see if that helps at all. In the meantime I have stocked up on white pillowcases so I can bleach them. Thanks again folks!

Can anything be done about these? My husband wakes up with blood all over his pillow every morning because somehow some of the scabs are rubbed off during the night. Do you think that liquid bandaid stuff would work? There is a lot of blood every morning. He doesn't really use a shampoo because he doesnt have much hair and he washes his head with Dove sensitive skin moisturizing bodywash.

I'm sorry, I don't know anything about Medicare. My husband has been on Tarceva for about 10 days now and has a grade 3 rash. Its all over his face, head, back, shoulders. He has pimple looking things all over his upper body along with the rash. If he accidentally scratches something it bleeds. He was miserable for a day or so but we think that him being in the sun (for a whopping 10 minutes) exhasberated things and now he isn't so miserable. We went to the oncologist yesterday and everyone was very pleased with the rash. The oncologist says "the uglier you get the happier we get". So hopefully his discomfort will be worth it. We did get a script for a topical ointment and an oral antibiotic that will hopefully reduce the rash. If the rash gets super unbareable they said they would quit the Tarceva for a couple days then start at a lower dose. Also, the rash seems to be different for everyone. I know a lady that is doing really well on Tarceva and didn't get a rash at all.

We totally thought Alimta would be a cakewalk compared to Carbo/taxol/avastin but that was so not the case. The fatigue was just getting to be too much even when my husband went to bed at 9:00 every night. Then there was the stomach issues... He didnt feel full blown nausea, but his stomach just doesnt feel right. He just felt yucky all the time instead of just a few days like he did with his first line treatment. He actually told me he was almost glad that there was progression on it so he could switch to something else. Of course we would have liked to get more mileage out of Alimta, it just was not in the cards. Now he has been on Tarceva for a week. Its great to see his energy come back. Unfortunately the rash has reared its ugly head but that is supposed to be a good thing I guess. It still doesnt keep him from getting flash backs to his acne days though.

My husband's blood pressure meds were making him cough. Apparently the ones that are ACE inhibitors can give you a cough. If you are on BP meds (he needed them because the Avastin gave him high BP) you might want to discuss that posibility with your doc. Good luck!

Double post sorry!

Right, but courts infact did allow them to try the alternative treatment and after the scans showed growth while on this treatment is when they ordered the chemo, according to what I have read.

Hi Judy. My husband had his first Alimta treatment last Tuesday and is doing pretty well. He was constipated for a couple of days but that has worked itself out. He was having some muscle soreness but I might atribute that to the fact that he was not taking enough folic acid (his multivitamin had enough in it but I did not realize he was only taking 1 multi when the "serving size" is 2). We have since corrected that and he feels fine. His head was quite red for a couple days after, like he was flushed or something. He is also having nosebleeds as well, more than when he was on Avastin. We will discuss these things with the oncologist next appointment as I am not sure if these are to be expected. Overall, I feel he is tolerating this quite well. Still riding his bicycle several miles a day when he can so fatigue has not been an issue yet.

My husband has bone mets, a spot in his pelvis and a few in his ribs. After 4 infusions of chemo with zometa his scans how that the bones are "healing nicely". I have no idea what that means, I do know that one met on his rib was causing pain, but now is not. Also, his PET showed a "devoping met" on his spine, however the follow up bone scan after treatment did not show anything.