Well, I've stayed with the board and reading a lot; I am a cg to my husband who finished radiation a year ago February 14th. February 22nd he thought he had pulled a groin muscle and MRI showed the cancer had moved to his bone. Dr.'s went in on 3/6/08 and removed what they could of the cancer, wrapped the femur in a metal plate to stabilize it so that the radiation and chemo with Erbitux wouldn't fracture what is left of his leg - he lost his leg in a motorcycle accident years ago below the knee. Now it has been 2 weeks and he is still in a great deal of pain; post surgical - he starts radiation/chemo on Monday.

Now that you are caught up on what has been going on, can anyone help me understand this rash? I have read/seen dreadful information, but still cannot figure out if it is very painful, itchy, uncomfortable, intolerable or what. Will this venture be as rough as the 33 treatments of radiation & chemo to his neck/throat?

Also - what are caregivers doing about planning for the future...I'm having a very difficult time with this. We had a trip scheduled to go to England in March to see my dying brother (cancer again) and it had to be post-poned...Now we are trying to go in mid-April, but I'm not sure of how sick my hubby will be with this new drug? Can anyone give me some information on this new drug?

There are several people here who have experience with long term use and side effects from Erbitux both from a CG and patient perspective. This includes remedies. Hopefully you will hear from them soon. You could also search the forum for Erbitux and see what pops up. (I had it only once, so I cannot really comment).

M

My husband has had 7 rounds of the Erbitux and the rash that comes with it. For the most part it is just annoying with no real pain. The worst part is the cracking of his fingertips and feet. His skin is really dry and onion like at this point. We just keep antibiotic cream on the split parts and he uses the Biafine cream on the rest. His hair is also thinning and getting dry. He kept his full head of hair even through the chemo he had in December. In his opinion this is better to tolerate than the radiation. He just gets very tired the next day. As for planning for the future, we really don't make long term plans. We do however plan on going to the beach for a week at the end of June. To me that is as far out as a can go time wise. He will have another scan soon and we will have a better idea of what we're still up against. It's as though you really have to take one day at a time and don't make plans that will cost too much to cancel if need be. My husband also has a PEG tube and we have to allow for that ie supplies and the pump. Feel free to send me an email if you have any further questions. Hang in there, Sue

Hi -
What kind of chemo will he have, cisplatin? I had 6 rounds of cisplatin with Erbitux at the same time(this was for a recurrence, so it was about 6 months after the head and neck radiation). It was not nearly as bad as the original treatment with radiation. Not even in the same league. Please let me know if this is what your husband is having and I can give you more details about what's it's like.
As for the rash, I agree totally with Suemarie, it's more of an annoyance, dry skin, cracked fingers and you really have to keep up with lots of lotions and creams.


Take care
Melissa

p.s. Hi Suemarie- sounds like things are going ok, I'm glad you guys are going to get to the beach too!

Thanks everyone for responding to me. He is only having Erbitux with his radiation and today was his 3rd day (he had Cisplatin the first go round and didn't tolerat it very well, so they stopped doing it after the 3rd treatment). For the last 2 days he has been complaining of a massive headache...of course, I fear the worst, but I give him tylenol and it seems that benadryl is helping with his "hot skin"...when I touch his skin it is hot, but he has no fever...I hope it's because of the combination radiation/Erbitux.

At this point, I'm overwhelmed - before he was diagnosed again, we had put a contract on a house after selling ours and we're supposed to close on it April 25th...by trade he is a contractor and is a perfectionist! Of course, we bought a fixer upper (HUD home) and now I don't want to go forward with it, but this is where he gets his greatest rewards - he does the most gorgeous and beautiful work. I don't know what to do at this point...move forward on the house, while he undertakes the fight for his life and also a major remodel...I'm so lost and scared - I don't talk with my fears with him because he always puts me first and when I did talk to him about this he says...everything will be fine - I'm fine and I'll be fine. His goal is to get me closer to my work and not have a 2 hour commute each day. We've been married for a little over a year - in fact we escalated our marriage when he was diagnose. He had never been married & doesn't have any children...his family is wonderful, but I don't want to stress them any more than they already are with my feelings and fears - so y'all are it:-)

I read the board all the time and have over the past year...just don't say a lot as everyone has such good advice and I thank the Lord that there are people out there that truly understand what the patients and care givers are going through...I hope that one day we can all meet in a central location and see and talk with one another....Thanks you guys and gals out there!

Unfortunately the Erbitux side effects will probably get a little worse further on into treatment. You'll see in the previous posts on this thread that skin cracking can get bad. Your husband might not be up to fixing up a house or maybe he will just have to take it more slowly than he would like. Ditto on keeping your fears to yourself. My husband's parents are wonderful but I don't want to stress them even more. My father in law told my sister in law that he doesn't think I'm telling him everything. I don't think he really wants to hear it. He didn't want to hear it when I told him my husband's cancer had spread to lung. According to the doctors he cannot be cured, only treated. Even my husband doesn't hear it. I guess we can only process so much information that we really don't want to hear. This is the best place to come to for coping. I think this site saved my sanity. Feel free to pm me about the Erbitux.
Sue

It's hard to say whether he will be up to the house or not. For a lot of people, having something "normal" to work on during treatment is really helpful. You will probably know more in a few weeks after you see how the Erbitux goes.
I keep a lot of my feelings either to myself or just with my husband or counselor(thank god for her taking insurance!). I found that sometimes telling my family members too many things caused me more stress because I have to worry about how they will react to things too.
Melissa

Hi,
My mom had the Erbitux rash--her skin was painful to touch, it looked like onion skin, and oozed--she stuck to her sheets, pj's, etc. Her Chemo doc gave her a precription for minicyclene (Sorry, can't recall the spelling) and we used Aquaphor all the time. Once we had the script/aquaphor combo things calmed down within days. She does have a slight scar where the skin peeled...I call it her medal of honor!

The rash will get worse and cause other aching problems. I'm glad none are serious and there isn't any itching from it. I keep rubbing Aquaphor Healing Ointment on it. I do this about anytime it appears the Aquaphor has dried out or gotten rubbed off. It helps a great deal and I believe it has helped clear up some of the Rash.

Well, the rash is beginning to appear and Jim is in a very bad mood. He is in extreme pain in his leg - walking with crutches still. His radiation Dr. says it is too early for him to be free of post-surgical pain let alone the fact that the radiation takes a while to reduce the tumor. Jim says that he feels tumor pain now...not post-surgical. He says there is a difference. I am soooo afraid. He is very edgy, gripy and short. I happen to have 2 hernitated discs in my back and it is very hard on me to lift the countless bottles of gatorade, water and liquids out of the car to bring them in...I am so tired and feel so guilty about even writing this, when he is in the fight for his life. My girls and mother have abandoned me because they keep saying suck it up "you knew he hand cancer when you married him" - anyone in their right mind would never have done such a thing; so I try to be strong, but tonight is just really tough.

We're proceeding on the house so that hopefully this will keep him busy and give me something to look forward to. I hate cancer...my brother is in London dying from it and I cannot go see him because my husband is in the fight for his life, too. The only time I talk to anyone is on this board. Thank you all for listening -

Paula