Hello, all,
Gordon in Atl here- just out of a week-long hosp stay for 2nd round of chemo. Seems main problem so far is mucositis.....BOY!!! I've learned a lot from these boards on how to deal with various side-effects and feel that I'll be okay for now. (at least until I begin RAD)
I came across someone's post mentioning a portable infusion pump....is this common? I've had to stay in the hosp for 5-7 days for continuous 5fu (Cistplatin on 1st day). While I am grateful for effective treatment I really have a bad case of "cabin fever" toward the end. I was not offered an alternative....I'm on medicaid/m'care- does that have something to do with the fact I've never been offered a portable pump, or does it have to be administered by nurses? Thanks!

Gordon,
Hello...my husband had a continuous infusion pump of 5fu when he did his chemotherapy. He had chemo at his oncologist's office the first day(Taxotere and cisplatin), then they hooked him up (you need to have a mediport to do this) to the 5fu and sent him home for 4 days of continuous infustion, he returned on Friday to have the pump unhooked. He did four 28-day cycles of this type of chemo. I'm not sure it's for everyone, could it be that they wanted to keep a closer eye on you? not everyone handles this therapy well from what I hear...
best of luck with your treatment, hang in there.

Thanks, Jan! You-all have really been through it with so many treatments. How is your husband doing at present? I'm not due to go back into the hosp for another 7day treatment until 30Jun- Does anyone else have relevant info before I go back in?
Also to begin radiation in Jul- am VERY anxious about that- I don't want a PEG tube, although I know it'll probably be for the best, and want to save my salivary glands if possible. Seems very "iffy" and MANY unknowns-
Any responses greatly appreciated.

Hi Gordon,
Your best chance at sparing your salivary glands is if you are a candidate for IMRT and it is available at your treatment center. You may have to lobby the doctors for it. The radiation was tough but you'll get through it. It is really important to keep a positive mental attitude. I took anti-anxiety medications for quite a while early in treatment and it helped me a lot to maintain my emotional balance.

I also did it without a PEG tube but in good conscience I would recommend getting one since I lost over 60 lbs and it slowed my healing process down. In hind site, I would have gotten it. Most people have said it's not a big deal and maintaining your health (and weight)is an important part of recovery.

They also have some very effective pain management drugs so you should be able to get through this with an absolute minimum of suffering.

Gordon,

Jim (my husband) is doing pretty well right now, but yes, it is a very difficult treatment, particulaly the radiation. Jim is 6 weeks post radiation now and though he is only able to swallow small sips of water currently, we hope he will be eating again soon. He did end up getting a G-Tube (similar to a PEG) about 2 weeks into his radiation treatments, and because it became "urgent" due to his inability to drink or eat we had to have it done surgically. I think in hindsight he should have had it placed before he began radiation, as it is he lost about 22 lbs. Anyway, he is feeling better every day and his strength and energy is slowly returning...we are now preparing for the modified radical neck dissection which looks to be happening in July. I wish you the best, and I hope you have looked through the site index here because there is an incredible amount of helpful info for you. Hang in there.

Thank you, Gary and Jan for the encouragement and info. I go to the hosp for bloodwork this Mon (Jun30) and if white cells are okay, will check in for another week of (chemo) treatment. Side effects from that haven't been TOO awfully bad, although mucositis (mouth pain) isn't a picnic. I've lost a little weight-I only weigh 150 lbs-but am MUCH more anxious about beginning RAD in JUL. Will keep you posted and am doing my "homework" to know what to expect. I'm REALLY going to lobby for IMRT!!! Thanks again!
Gordon

Hi Gordon,
The radiation effects come on pretty slowly also and you will have plenty of time to deal with them as they come up.

My hospital has an "advice nurse" that I can call 5 days a week from 9:00 to 5:00 and that has been very helpful in keeping a lid on things.

Remember - it WILL pass! You will get through to the other side. Take it one day at a time and don't worry about tomorrow stay in TODAY! I am NOT embarrased to admit that I asked for and took anti-anxiety meds for quite a while.

Hi Gordon,

I don't know if getting a portable infusion pump is covered by medicaid/care, but I do know you don't need a nurse except probably to initially set it up and turn it off. Heather was offered the same set-up Jan described, but was unable to take advantage of it because she ended up in the hospital before she was able to start the chemo.

Now that she's home, she won't have a pump for the chemo because she is not doing the 5 day infusion. But she has 3 portable pumps for other medications. The nurses came out a few times until we learned how to use the pumps. Now we take care of all 3 ourselves. The chemo, of course, is a little different. Because of the toxicity, I would think you would need a nurse to do the initial set-up, either at home or at the dr.'s office, and then again to unhook it when finished.

Jan did have a point, though, when she said they might want you in the hospital to monitor you better. You should at least ask about it. If you're not having any major problems, I would think it would be feasible to do it at home. And it would be a heck of a lot cheaper for the insurance company, so you'd think they would allow it. Good luck!

Rainbows & hugs,
Rosie

.....UPDATE.....
My WBC was too low still to go into the hosp last week, so will go to clinic tomorrow 7/7/03 and check into hosp on Tues. I asked about portable pump, and yes, they do need to keep a closer eye on me, as I have pre-existing HIV for which I've been taking 6 different drugs 2x daily for 14 years. (with good results, btw) Thank God for modern health care professionals-there are actually some people who care enough to try to forsee potential problems and "head 'em off at the pass." Will definately find out about IMRT radiation, as this will be my last week-long chemo treatment, and then I begin the dreaded RAD.
Am still doing my homework. Thanks again for all the support and non-judgemental advice once again. These boards have really been a major source of info and inspiration.
Will post week after next when I come out and the mucositis keeps me from working (and EATING)!!!
Gordon