Thanks Cheryl!!

You guys are true women warriors!! I have found so much inspiration from so many of you!!

I hope you are all as active on the boards in the next few months. Your journeys serve as pep talks!!

Thank you again! Going in tomorrow for the MOs view on Erbitux v Cisplastin based on all of my specific information. I will keep you posted!!

Hi! Sally feel free to PM me anytime Yes UCSF is amazing. The Drs. there took really good care of me. I feel blessed and feel like my recovery from such an extreme surgery has been so good due to the way they performed the reconstruction.

So I did OK with the Cisplatin. For me the surgery and recovery from that was the worst part. Then end of radiation was also pretty rough for me. Yes it is true everyone has a different response to the treatments.

You will be an infusion room with other patients or in a hospital room with a bed. Its very comfy. I mean no a day at the spa or anything but you are just basically sitting there. I was in a recliner with a view of the Golden Gate Bridge. Not so bad. I didn't feel sick during the infusion- although afterwards I did feel a little hyperactive from the steroids I think. They first infuse you with fluids, then steroids I think and then anti-nausea meds. Then they give you the chemo. The actual chemo part only is about an hour or so. then they give you more fluids after that - at least from what I remember.

Afterwards they give you pills (Emend) that you take on a certain schedule for breakthrough nausea. They worked really really well. Only a few times I could start to feel it coming on. Apparently this Emend stuff is one of the best ever. We are lucky for that! I can only imagine how rough it was back in the day. One thing I wasn't expecting was being around all the other cancer patients. If you are in an infusion room you will meet some people who are getting chemo just to live another day. This really was intense and shocking for me. It was a little upsetting at first. So be prepared.

It was good though- it made me realize how lucky I actually was that I was getting this chemo just to take care of any stray cancer cells and make sure I wouldn't have a recurrance when for these patients they were getting chemo to minimize the cancer so that they could live longer. So that puts things into perspective really quickly

OK girl-- here goes! Sorry to be graphic but you asked for the real scoop on the physical effects.

So after the chemo I felt a little funny but not sick. The radiation effects started to kick in fo rme around week three. My throat was extremey sore and raw. Thick gross saliva (think ghostbusters-- yeeah..)- and that made me feel really sick to my stomach. I had a rough 2 weeks toward the end- when I was done actually because the radiation and chemo is all cumulative and I think they give you the max radiation at the end. You will be full of radiation and chemo by the end- when you want to be celebrating that its all over.. you won't feel so hot. I was crazy exhausted. Had trouble getting dehydrated from the nauseau which made me feel sicker. When this happens they infuse you with fluids which makes you feel soooooo much better. For me it was this bad cycle of getting nauseaseated and sick and then getting so much sicker from being all dehydrated.

Also the entire inside of your mouth and throat will be burned and red. This was painful fo rme. I went back on the fentynyl patch for awhile so don't be alarmed if you need to take some heavier medication. My chin, lips and neck were also extremely raw and red. The hair on the back of my head fell out- mid way up to the neck.

So I may have gotten a waaaay way more intense version of what you are getting- I don't know. My cancer was much more advanced and my surgery way more extreme.

Fast forward to 5 months later and all the major effects of the radiation and chemo were gone. My neck was still very sore and stiff and it still is from the neck dissection and radiation combo. The radiation does a number to the surgery area. It hardens the muscles or something but like I said I try and get massages regularly and I work with chiropractors and physical therapists who help me a lot.

Its all doable- certainly not fun but you will get through it.

I'm SO sooo soooo happy that you've been able to catch this at an earlier stage for you. I knew there was something very very wrong but was misdiagnosed for many months while the cancer grew and they couldn't save my tongue at all and it almost spread all over.

Tongue cancer is serious and can spread fast if it is not caught in time which is why they want to throw the book at you. I know its so completely terrifying and I'm so sorry you have to go through it. You don't want to have a reoccurance and please just do everything you can that they reccommend.

The treatments totally sucked - I will not lie but you just read lots of book watch lots of movies and get your mind off of the discomfort. Mainly its discomfort not agony... and it gradually built up for me it wasnt like I was lieing there writhing in pain barfing every two seconds. I think I envisioned that would be the case.
ALTHOUGH- I once almost threw up in a mall and on a bus
Because your body will fool you- you will think you are totally fine and then just randomly it will come on.
... it was mainly just feeling kind of flu-ish and bleh. Afterwards when you heal up you will be so excited! Everyday you will feel better and better and you will appreciate feeling healthy and good- so that is a silver lining.

So hopefully I haven't grossed you out of shocked you too much.
Take care and email me anytime.


LOVE, Kate

I was told pretty much the same thing, although I had tonsil cancer. I opted for radiation & chemo and I have had a "complete response" to the treatment. It wasn't easy.

The surgery option would have caused major quality of life issues and my team felt that my morbidity would be improved without the surgery (which would have been 14 hours on the table).

Tongue cancers are tougher and more aggressive then tonsil cancer. I believe that the NCCN Oncology Practice Guidelines still put radiation, with concurrent chemotherapy, as the first choice for treating tongue cancer. You may double check this on the resources section of the OCF site.

ps I am also a UCSF patient, at least that's where I received my RT.

Chemo and radiation first is the recommended for base of tongue not anterior tongue cancer for which surgery and radation and possible chemo... or so I've been yold.

I was told the same thing miss Kate. Because non HPV cancers aren't quite as responsive to just rads and chemo - surgery is the first treatment. good luck!