I moved jbentnwolfe here to start a separate thread.
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jbentonwolfe
Member
Member # 1353

posted June 03, 2004 05:48 PM
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HI, I JUST SIGNED UP TODAY, AND I DONT KNOW EXACTLY HOW THIS WORKS, I HAVE READ SEVERAL OF THE LETTERS AND THEY ARE ALL VERY ENCOURAGING. MY MOM WAS JUST DIAGNOSED WITH SALIVARY GLAND CANCER TWO WEEKS AGO. SHE IS 58 YEARS OLD AND NOT A DRINKER OR SMOKER, SO FAR IN TWO PAST WEEKS SHE HAS BEEN THROUGH TWO NEEDLE BIOPSYS, TWO OPEN BIOPSYS, PEG TUBE, AND THEY ARE GETTING READY TO START HER ON CHEMO/RADIATION. I WOULD APPRECIATE ANY ONE OUT THERE THAT HAS HAD SIMILAR CIRCUMSTANCES TO REPLY. THANKS

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jbentonwolfe

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Posts: 1 | From: san diego ca | Registered: Jun 2004 | IP: Logged

Hey J...

Welcome to the site! It sounds like your mother is off and running. Hopefully someone around here will have dealt with salivary gland cancer and can provide you with details. All of us have been on the patient or caregiver side of head and neck cancer and much of the treatment is the same. Good luck and your mother is lucky to have you by her side through this.

Ed

Jbentonwolfe: Welcome to our site. It is now yours as well. My cancer was not exactly the same as your mother's, but it sounds similar. Mine was primary in tonsil, but needle biopsy was the first attempt (2x) to establish cancer for sure. After a bunch of other things, such as scans, sonidirected needles, etc., I ended up with a peg, chemo and radiation treatment and eventually surgery to be sure a recurrance in the same place would never occur because all of the tonsils and lymph nodes near the secondary tumor weren't there anymore. This sounds similar to what your mom has in front of her.

As noted, we all react differently so she could skim through this with little difficulty or she could have a more difficult time. It just depends on how she reacts. I pray she has an easy time of it and little ill effects. Regardless, she can get through it and conquer this disease. As a caregiver for her, your support will be invaluable at those times that it gets to be heavy going for her, so hang in there and keep your mom hanging in there also.

Ok, thanks to all of you for your replys. It is all so positive! I really did not know how to start this all so I hope I am in the right place now. Is anyone familiar with the subliminal dvds and things that are for sale online? I would be happy to buy them if it is worth it. I must mention that my mom has a very nervous stomach and get sick very easily so I am looking for options that help her through the chemo with little sickness. I know there are new meds for nausea out there but are there other alternatives? And thank you to whoever moved me to the right place, I didnt know how to do it.

Hey jbentonwolfe,
Welcome! My hubby really didn't get too sick from the chemo/he had Taxol and Cisplatin and they always gave him meds first to help. He felt some nausea, but never really threw up from it. He did get some acid reflux (which he had trouble with before the cancer) and they gave him drugs for that also. Your mom is so fortunate to have you...I don't know how anyone gets thru this alone. We have a great support system and I pray to God everyday for Dan and others on this board...I will keep you and your mom in my prayers!

Debbie

I am a year younger than your mother. There are really no alternatives for anti-nausea medications. The best prescription one is Zofran. There is another one similar to it in effectiveness, ask your doctor. People have tried other things to augment the meds like peppermint oil drops and such. Nausea (and pain as well) management should be part of the team treatment protocol.

Like Kirk said - she may breeze through this -we all respond differently to treatment.

I didn't, was sick a lot, but still survived. It was probably more disconcerting for my wife than for me.

I'll add my welcome to this site - I've found it very helpful in dealing with the treatment and concomitant side-effects... as a cancer 'treatment' survivor (dealing with the treatment is the tough part so far), I found that the best anti-nausea drugs were Kytril (granisetron HCL) and Prochlorperazine Maleate (aka Compazine (sic)). The former I would take daily during my radiation/chemo (Cisplatin) treatments and also right before each dose of adjuvant chemo (Taxotere). The latter I would take anytime I would get and acidy stomach (mainly toward the end of my Taxotere chemotheapy) and it would take away the nausea very quickly. Nothing completely eliminated the nausea... but in my case, these helped - I found it good to have a supply of the Compazine on hand... obviously, check with your Mom's medical and/or radiation oncologist...

I'll chime in here too and say welcome - we're glad you found us.

Before they administer your Mom's chemo they should be giving her pre meds. Some start the night before, some are infusion immediately before. These will help quite a bit in controling her nausea.

I also found that Compazine works very well.

Good luck and please feel free to ask any questions.

Dinah

Well since all of you have gone through this, do you feel that you should be agressive with the doctors, or go with what they recommend? So far I am getting extremely frustrated. The feeding tube has given her nothing but pain and problems. We spent several hours at the er the day after it was put in and they detected nothing. The next day she went back to the doctor who put it in and it was too tight and there was an infection around it. so they put her on antibiotics but didnt seem to help. today she went back to the doctor and they are saying it is a viral infection, took her off of the previous antibiotics and gave her something stronger. I thought having this in and done would be a good thing before starting treatments, but it seems like a real hassle. did anyone else encounter these problems? thanks jw

JW,

My tube hurt really bad at first and when I called they kept telling me it shouldn't hurt. I have had it out even for a while and it still hurts in the same place. It was stitched in and had these wierd metal "toggle bolts" (as they called them). It was cinched down really tight and literally was tearing the skin. They said it was at an unusual angle because of the size and location of my stomach. I had all the stitches cut out and half of the water let out but I still hurt from time to time and I got full immediately whenever I tried to feed through it. They told me it was infected and we went a round of anti-fungal and antibiotics. It is important to keep it flushed at least daily and use peroxide around the wound at least daily.

Mine was a pain and hassle, too, and I was glad to finally have it out. I lost about 70 lbs total from August to January but I have gained back 25 lbs since March. I think your mother and me are exceptions and generally there are little or no problems related to the tube. Be patient but be dilligent. If you can isolate specific issues with the tube, the doctors or people her can help point you towards resolution. You could ask for lidocaine in the tube and put it around the skin short-term to ease the pain.

Ed