Today was the first day of treatment,regular radiation to both sides of the neck...tomorrow Cisplatin treatment first of three over the 7 weeks of radiation treatments. How about this ..I got married last Friday at 10 am. and had to be rushed to the hospital at 7 pm. with a tonsil bleed... never bled like that before in my life!!Had to stay a couple of days in the hospital..but it moved my treatment up a week earlier...Anyways,I'm glad it was after the wedding...and my wife( I like saying that) was a life saver!!! What a way to begin!!! I'll keep posting as I get further into this. Never a dull moment!!!Thanks and Thanks again ....Tom

Amifostine(Ethyol) worked great for my husband....tolerated it well. They alternated his arms and abdomen with the shots. Plenty of saliva but no taste buds!

Dear Tom,

I looked back on your first post, and you didn't have a staging at that point. Has your doctor told you exactly what type of treatment you are receiving, and for what?

My husband did very well with the Amnifostine. It helped preserve his saliva glands a lot. Granted, even in the best of circumstances, it's not a picnic, but the treatment was well worth it.

He also received chemo during his radiation. Are you also having to deal with this?

Please know I'm here, and will answer any questions I feel capable of.

Love,
Mandi

Tom, don't hang around any casino's. you have rotten luck. Having that tonsil essentially on your honeymoon is the pits.
I wish you good luck and much happiness in your treatments as well as your new marriage. Sounds like you have married well, any woman willing to face cancer with you and share in your pain and suffering is a keeper.
Darrell

Especially on your honeymoon!

Dear Mandi and everyone....my dx on feb 5 was very similar to gary's, right tonsil, stage 111, no nodes, no mets..Tx from now until May 14, 35 radiation treatments and 3 Cisplatin Chemo..The medical care I'm receiving is just outstanding and very considerate...The good news is that Trish and I Love each other so very much that we are going to have another ceremony in the summer,it's being called a Blessing..an another Honeymoon!!! I'm really lucky man! Thanks everyone, you're all the Greatest! Big Wheel Keeps on Turning..Tom

Hi Tom,
What caused the tonsil bleed? That I never had -just a big tan rubbery tumor. I was originally scheduled for three Cisplatin treatments also and the tumor responded so well they dropped the last one so I just had 2. Just as well, I reacted very poorly to the second Cisplatin session. Three weeks into radiation it had completely melted away. There was no trace of it in the 3 week CT scan nor has there been since.

Congratulations on your marriage!

Gary, Only after 2 Rads and one Cisplatin my tumor feels like it is shrinking...How well have your salivary glands held out...and also what was the unfavorable reaction to the 2nd Chemo?? I just finished taking the last Zofran pill and have only one dose of dexamethsone to take for this round of Chemo, I have just a slight bit of nausea...so far so so good..Gary, Thank You!!it's really a great feeling for me to have someone who been through the paces!!I'm still figuring out how to use this sight so I hope that all my messages get through...Thanks ever so much! Tom

Hi Tom,
My tumor started shrinking pretty quickly also. When they did the mid treatment (3 week) CT scan it had completely dissappeared.

According to the manufacturer, Zofran works for 60% of the population group taking it. It worked ok for me for a while. It only has a maximum effectiveness of 3-5 days then you must shift to another anti-emetic. I think in my case the Cisplatin worked too well. They decided to drop the last treatment (I was originally scheduled for 3), so I only had 2 chemotherapy sessions. I had multiple problems with constipation (probably from all of the pain meds -and it causes nausea too), nausea from the chemo and mucositus -nothing out of the ordinary really -just the usual treatment misery!. Things started to get better when I got weaned off of the pain meds. I didn't have a PEG tube so I needed the pain meds to swallow so don't be too hasty to get off of them. Pain management is an important aspect of the healing process.

The second chemo treatment was much worse for me but everyone reacts differently so you may be much more tolerant than I was. I may have been suffering from radiation sickness by then also.

I had IMRT and it spared all but one salivary gland. It has been recovering steadily. It can take 18 months or more for the surviving glands to heal. If you are having XRT, you may never regain salivary function. The Amofostine can be a difficult treatment for some. Some can not tolerate it.

Tom,

Everyone is different in reactions to chemo, as Gary said. Sometimes the body has the week or two between chemo to figure out that it might want to reject the chemo. Your nurses will watch for this and handle it.

If your chemo is like others there should be pre dose of dex. 12 hours and 6 hours before treatment and pre dose of anti nausea drugs through IV? Then some chemos they give you the doses of steroids for 3 days after treament.

This is all to help you tolerate the treatments better.

Take care, it sounds as if you are prepared and have a great attitude.
Dinah

Dear Friends, Yesterday was the second day after chemo and I felt medium nausea..I feel better today ..last day of dex for this round..and I have Stemetil for back up if I'm nauseaous..What should I take for constipation??I've been drinking prune juice..eating cold melon,yogurt,green tea,smoothies...Should I get a Peg put in????I'm starting to reconsider...Gary, the tonsil bleed was caused by the tumor. It couldn't be cauterized,which is why I was in the hospital for 2 days..The blood loss caused my hemoglobin count to drop to 106..but treatments began anyways because I felt OK....Well,I'm back at radiation today # 3...Thank You All!!for your caring and qualified replies!!Your Friend, Tom

Hi Tom,
The good news is the further away you get from the chemo the better you'll feel. I got to a point where I couldn't keep anything down so I used compazine suppositories and they worked ok. Talk to your nutritionist about constipation meds. There is wide range of everything from OTC to prescription. Also things you are consuming now will be painful to consume later on like any kind of fruit or juice.

Your hemoglobin count will drop from the radiation and possibly chemo also. Some chemo does a number on your bone marrow so your WBC may drop as well. Red blood cells get replaced every 120 days so that will return to normal levels eventually.

I don't want to reopen the debate about PEG tubes. Do a search and you'll find out more than you want to know. I personally did not get one, preferring to tough it out. It took a lot of discipline to literally force feed myself, in spite of the tastelessness and pain. I still ended up losing over 60 lbs. The doctors weren't happy with me then. I lived to tell the tale and you can too if you are willing to go the distance with nutrition and water intake. As it was, I still had to be hospitalized twice for rehydration.

Some swear by them and some some swear at them. Although interestingly enough, most who swear at them DIDN'T get them!

You are really early in treatment. The worst of it is yet to come. My side effects tanked out around 3-4 weeks POST Tx. You need to prepare emotionally for this. Roll with it, stay on top of the side effects and you'll get through this!

Gary, I'm going the same route as you, no PEG, and deal with it as we go on. At least that's what the doctors are suggesting...It will be interesting to see what happens...Thanks for the map and guidance over the mountaintop!!!I'll try to remember to laugh inside now and then...Tom