Oh gosh Nancy - how can you stand it being permanent??

It's about a 6 on a 1 to 10 scale, and I only had the 2nd round on Thurs/Fri...I won't be able to tolerate this much longer....

Other than that, I am holding together OK.

I am wondering about the PEG. Should I have it removed immediately, or just by any Dr back home a few weeks after the last tx? How long can it stay in safely?

I want to go home so badly, that I think I plan on staying only a few days after my last rads, is that a fair timeframe? If the last tx is on a Fri maybe stay one week after for followups, etc? Of course I'll discuss all this with the docs, but thought I'd get some real world experience feedback here.

Are they going to do more CT/Pet scans etc??

They only did one baseline and a weekly status for position only. How soon, and often should I have scans for possible recurrances?

I've heard several different timeline suggestions.

I don't plan on having the 3rd round of chemo (at least almost for sure not Cispl)!!!

Today I have dry mouth and a slight sore throat, but feel lucky overall re: side effects. Besides the tinitus, we have been able to manage them all to reasonable levels, especially the 2nd time around on the chemo...(Zofran is great!)

My teeth are starting to hurt a little, and I have a couple of minor mouth sores.

The saliva/phelgm is still out of control!! (Where does it all come from !?!?!

I'm almost 100% Osmolite now, and gateraid/water both through the PEG. Not much at all by mouth anymore...

Well...I'm sure that's more than most wanted to know Just wanted to put an update on while I have the energy to type.

Hi Michael,
Wanted to let you know what my husband's experience with the PEG was. His doctor's wouldn't okay having it removed until he could maintain weight without it. For him, that ended up being 5 months after treatment. It's a very easy procedure to remove it.

Good luck on the home stretch!

Anita

Michael --

Our nutritionist says PEG removal varies from 1 month to six months, depending on how dependent the patient has become and also, how well they are maintaining weight (as Anita said).

There is a tinnitus fundation on the web -- the site gives suggestions for dealing with it. However it may resolve -- I was given a drug years ago that caused awful ringing for about a week and then it faded away. The tinnitus I have now (slight) is not related and does not affect my hearing.

Barry now has 10 treatments to go -- pretty soon it will be single digits! His major complaint is thrush in back of mouth (near uvula) which malkes swallowing painful w/o painkillers or using one of the numbing gargles.

Hang in there!

Gail

Hi Anita.

My Mom finally got through to the GI Doc today and he affirms the protocol you stated, and thinks any local GI doc can simply remove it locally whenever it's time.

Gail, I hope you're right about the tinnitus!! It's driving me insane!!!! Still getting worse. Barry had fewer tx than me, I thought? Is that due to Toma service? I'm sorry about the thrush Was he on heavy anti-biotics?

I have 9 radiation tx remaining according to my calculations. I hate to ask to confirm, but I think that's right.

Nine to go! You're on the straight now, dear Michael.

Love Helen

Michael,

I second what Gail said about the tinnitus. It's not time yet to assume it will last at this point. I had an illness a few years ago where I had really bad ringing for a couple of weeks but it went away after. I also had it during chemo/rad--though I don't think it was quite as constant for me as it sounds like it is for you-and I haven't had any since about 2 weeks post-rad, and I was really afraid I would because I have a history of ear problems.

Remember that the rad is a gift that keps on giving and you will continue to feel bad, possibly worse, for 2-4 weeks after treatment, so you should definitely not plan on having the PEG removed before then (you may still be using it three-4 weeks after or longer). I also would consider remaining in NY for at least two weeks after because of this. I ended up in the hospital with an infection and neutropenic three days after the end of rad/chemo so that's another thing to base yor decision to stay/go on. If you are neutropenic or close to the line you may want to stay for as long as it takes to get past that. Not only because you would be *extremely* vulnerable to catching something while travelling but because if you do end up getting some kind of infection, it's best if you can be treated by the folks who have treated you the whole way through I would think.

post script- this is just me, and I doiunderstand loud ringing in your ears is annoying but of you are doing OK managing the nausea this time around, if I were you I'd do the third chemo. If not cisplatin, talk to them about carboplatin.

I look at it this way--this is your one chance to fight this thing as hard as you can and even if you feel like shit right now, it will give you peace of mind later and is only going to add another week or two of feeling bad (when you'll probably be feeling pretty bad anyway).

If there was any way I could have done my third in a timely manner, despite the constant vomiting, etc., I would have--but my WBC was just too low and they wouldn't let me.

Just my 2 cents- of course it is your personal choice-but I do think people need that two cents soemtimes when they are where you are (and I have been there). I was really not wanting to continue with chemo myself until a friend reminded me that this is what I was thinking when I wasn't feeling so ill!

Hi Michael,
Hope you are feeling "quieter". John did not get his third cisplatin today. In consultation with the oncologist, he acknowledged he too had ringing in his ears after a previous session. That symptom in addition to the fact that he has had an excellent response to the radiation so far made the decision easier for us to make with the doctor's complete concurrence. Later we found out his WBCs were 1.3 and too low anyway to receive it today. So now we are down to 8 more booster radiations and we're done except for the whatever comes our way next! He feels like crap but I feel a sense that all will be well. Be strong - Live!
Janet

Hi Michael --

Are you getting 30 or 33 treatments? Barry's getting 33 -- he started the 10th but lost one treatment due to Labor Day and one due to machine being down so his last day is the 27th, not the 23rd as it would have been if there had been no skipped days. Dang! (He has 10 left) You started on the 15th?

Hope the tinnitus is getting better -- I know my ENT had some suggestions but at the moment I can't recall all of them -- biofeedback, acupuncture were two-- apparently some people are helped by ginkgo as well. (I wouldn't take this while undergoing treatment however!) Probably see an ENT afterwards for hearing assessment and see what they suggest.

Hang in there! We are as well...

Gail and Barry

Hi all..

Well.. Michael's constitution has deteriorated to the point where he had to be admitted to the hospital yesterday. Since he has started his treatement here in NY he has lost over 40 pounds and counting. He was not able to keep anything down for about 24 hours. I had to pry him out of bed in order to go to his radiation treatment yesterday. It seemed to me that it just about took every ounce of strenght that he had. When we got to the hospital for his treatment (radiation therapy) he had trouble walking, he was bumping into walls and had to be propped up.

When after what seemed to me to be a longer time than ususal, I walked back back to behind where they don't want non-patients to be, to look for him. I found him in a chair hunched over a basin gagging and crying. He had been stuck on the table for radiation feeling the same way. His color was not good. He looked green from nausea and red from being flushed (very splotchy). At one time he was surrounded by 2 RN's, a nurse practitioner, and his Doctor (Dr. David Pfister). After about an hour of IV fluids and medications, his color started to return to normal. They all were very concerned.

The good news is, he is now in the hospital getting re-hydrated. I am not sure when he will be released, my guess is maybe tomorrow. It is all going to depend on how he responds. He had a rough time sleeping last night, nurses coming and going and lights on and off, etc. When I came in this morning and he was sleeping finally. When he woke up, I helped him put on these gel pads that really help him with the burning from the radiation. Then I slathered his neck with aloe gel. His whole neck and jaw and shoulder areas are where the radiation is being focused and it is really starting to get irriitated and RED. It is like a very bad sunburn. He has a few blisters on his skin and some sores in his mouth.

He has extreme pain when he tries to swallow, even if it is just saliva. I think the last food he ate was a few spoonfuls of some soggy rice crispy cereal about a week ago. Now, his only method of getting nutrients is through his PEG (feeding tube which was inserted before treatment). This tube goes directly into his stomach. We have to use gravity feed bags (a lot like IV bags that hang) and I fill those with a couple cans of Osmolite (kind of like an ensure drink). This has to drip SLOWLY, otherwise it makes him VERY nauseated. He is supposed to take 7 cans a day, but hasn't done that yet. In fact, over the last 4 days he's had a total of maybe 5 cans. Also, it tends to curdle and go "bad" if we leave it in the open hanging bag for hour dripping slowly, so I may start adding an ice cube hourly or something to keep it fresh.

The nurse just came to give him some liquid version of REGLAN (Metroclopromide) which usually helps move nutrients out of the stomach quickly so he doesn't have a chance to feel nausea and vommit. This had to be injected by syringe into his feeding tube. And a couple of minutes after we did that he threw it up. I am waiting right now for a nurse to come so I can explain what happened. Hopefully I can get them to prescribe something for the nausea throught the IV. I think at this point, he would be able tolerate that better.

Same thing happened 10 minutes ago when he reluctantly used a Prevacid since the hospital was "out" of Zantec (liquid) which he takes at home. I'm off to the apartment to get it now, since obviously the Prevacid made it much worse. He esophegous is already raw in and out from radiation and now even more so inside from the heartburn/bile vomitting. I don't know just what to do!

Probably too much information at this point, but I wanted to let everyone know that he is doing "ok" for now. I thank everyone for all the support and well wishes and good thoughts as we go through this horrible experience.

There is serious talk about skipping and/or substituting the last dose of Chemo with the Dr. Seems to be unclear the benefit is not known.

The ear ringing is still disableing and registers an 8 on a 10 scale sometimes.

Love and hugs to all-

Seth