I didn't stay in teh hospital after my second chemo (it wasn't offered as an option) but I did go to the med oncologists office for extra IV hydration every day during that week and so they could fiddle with the anti-emitics as well. If you do't go to the hosp., you might see if you can make that kind of arrangement ahead of time. Of course, I was dealing with nausea from the amifostine too and so I ws sick from that, even when the nausea from the chemo seemed to be held at bay.

I think in your case, the hosptial might make sense, though, since you have been having such a hard time of it. How is your white blood cell count? Hopefully there are good precautions in the hosptial protecting you from other diseases. That is the only thing I'd worry about, is catching something else there.

I'm glad you're feeling batter and had a chance to actually get out a little, and to see your parents too--but do keep track of your WBC when doing things like that too. believe me, the last thing you want is coming down with some other kind of flu/infection/virus just becaue your WBC is low. That could really throw off your radiation schedule.

Good luck, Michael, I'm thinking of you and Seth.

Nelie

My father was totally fixed after his hospitalization. He does get admitted for the overnight when he gets his Cisplatin. Yes, we dislike it, but we bring in our own lighting, a big screen laptop with wonderful speakers and movies. Luckily, we are able to get a private room and they roll a bed in for me that I adorn with chenille and faux fur blankets. Its all good. The continuous IV fluids are awesome too. We have NON hospital food delivered, although we eat it out side the room so my dad doesn't have to smell it. He is finding that the smell of food is really offensive. The downside is that no matter how comfy and like home you make the room, you DON'T get any sleep at a hospital what-so-ever. Loud beeps, loud RN's lauging at the desk, overhead pages, random staff wandering in and out, you know. I would suggest asking about a home care infusion RN to come out and bolus you with some fluids-It's no big deal, they just pump fluid into you.
10 more rads to go for us, it is SO awesome. You'll be at this point too---

Michael, I'm glad you're feeling a little better. I've been worried about you too.

I find it interesting that you said the Integrative Center at Sloan is like a 5 star spa. The Integrative Center at Moffitt just opened this year and they've colocated it in the same building (separate from the main hospital building) with psych services. They mainly offer acupuncture, therapeutic massage, and yoga classes as I recall. They were just in the process of hiring an acupuncture doctor when we stopped in to see them last February, but we did get the benefit of all their interviewing and Jerry hooked up with the acupuncture doctor they intended to hire even though she wasn't on staff yet.

Thanks for sharing all the information you've picked up traveling to different centers across the country and meeting with different doctors. I like to hear what they are doing at the #1 CCC in the country as well. I find it fascinating (and somewhat troubling) the different treatment options and standards from center to center.

Good luck next week. I'm sending healing thoughts your way.

Connie

Hi Michael and Seth,
Don't see either one of you logged on the last couple of days and neither of you has posted. Little worried about what is happening so give us an update when one fo you gets a chance.

Hoping your are feeling better and the GAGGING is under control.

Take care,
Eileen

Hi Michael, I am like Eileen, a little worried, haven't heard back, are you doing okay? Carol

Ditto-

Ditto, ditto

Hi Everyone this is Michael's sister Heather using Seth's screenname since I am visiting him this weekend... Just wanted to give all of you an update since Michael has been so sick.

Michael has been vomitting from the the gag reflex and phlegm. However, last Friday marked his halfway point in treatment. Total weight loss to date is 30 lbs. His hearing test yesterday showed hearing loss in his left ear. He is losing his hair and his goattee. He also tried acupuncture a couple of weeks ago and is going to try that again! That sounds horrible to a person that is PETRIFIED of needles!

Nothing seems to help the gagging. He has tried everything... anti-spasmotics, Neurontin, Adavan (Sp), Compazine, Raglan, and Zofran. They are helping w/the intermittent nausia, but NOTHING is helping with the gag issue. I saw him eat part of a banana this morning, but he has not eaten anything else all day. They have been using the peg to keep him hydrated. I am very worried.

He has not gotten up all day. He is completely exhausted and wiped out. Tonight he was had severe chest pain and is now concerned about his heart. He gets chemo starting on Tuesday. We are all very concerned because he is already so ill. I don't know what to do. He says that nothing tastes like it is supposed to. At times, even the mention of anything makes him sick. My brother is very weak. This is extremely difficult to see Michael like this. He is the person that I run to for support and now I feel almost entirely helpless, like there is nothing I can do to help him feel better.

I want to thank all of you for your continued prayers and support. I know how much all of the advice and support means to Michael. His spirits seem alright considering. I just wish there was something that could help w/the gagging. Once again, thank you all for all of your support. I will try to post again tomorrow.

Oh Heather and Seth -- I do not know what to say -- continue to be strong for Michael, yes, but I think you also need to sit down with his medical oncologist and discuss a Plan B if he gets too sick -- is this a reaction to the cisplatin? (I have heard of a couple of similar situations with cisplatin -- (one recently elsewhere on this forum) -- a birdwatching friend in Australia is also going through a rough time with HNC chemoradiation using cisplatin and we just heard that they had to put him in the hospital on IV for a number of days as he was so constantly sick.

Encourage Michael to try the acupuncture again -- he might have to do it 2x a week for a while -- I asked our medical oncologist and she said that they have had good luck with it in cases of nausea or pain not responding to the conventional drugs.

We will keep you in our thoughts and prayers,

Gail and Barry

Barry: Dx: 6/21 Stage IV right tonsil, base of tongue, HPV-16+, in 4th week of chemoradiation (tomo-IMRT and carboplatin)

Hi Heather, Seth and Michael, Hang in there. All of you. This too shall pass.

I am concerned that with all the bad reactions he is having otherwise to Cisplatinum, his blood cell count may also be low. How is he doing with that? I had pretty bad nausea with cisplatin, and some gag reflex nausea too, but not nearly the problems Michael is having, but it turned out the biggest issue was the cispatinum pushed my WBC so low (to the point of neutropenia)that my second treatment was delayed almost a week and my third would have been delayed at least two weeks--at which point (raidation had ended a week and 1/2 before) both the rad oncologist adn medical oncologist agreed it was not worth doing (especially since I was just recovering from a fever from some unknown infection at that point).

So, like Gary who often posts here, I only ended up with two chemo treatments though I was supposed to have three. I'm not too worried about this, but that's in part because I had a stage II cancer and the chemo recommendation that I followed was thought to be (at least on this side of the Atlantic), super-aggressive treatment for a stage II to begin with.

In Michael's case, I would think it's much more important he get three chemo treatmetns so the chemo can keep acting as a radiosensitizer and he will get himself the max. benefit from radiation. So what Gail said, I second. Talk to his medical oncologist about what Plan B would be.

You all are in my thoughts.

Nelie