Hi,

I, too am new here.

I am a Leukemia survivor, had a Bone Marrow Transplant in 1993. The problems I've had surrounding that were Graft (new bone marrow)vs. Host (me) The new immune system attached my mouth, eyes, and all other mucous membranes. The past almost 2 years, I had an unusual spot where a tooth had been in back of upper right mouth. The Bone Marrow Doctors set me up to see an Otorlarngologist at the same place, a major cancer center. In July an MRI showed OK, in the fall this area proceeded to get worse as I've been sick with upper respiratory problems.

By November, we agreed to get a biopsy quick .Actually, before the biopsy, my bone marrow doctor told me it looked like squamous cell carcinoma. I had a biopsy 12/16/09 and was told 12/23 that it was squamous cell cancer. I guess the appearance changed over the last couple of months. After results I did find this forum and read some information. After a CT scan, I was told 1/6/10 that I would need a right posterior maxillary paletectomy, and it was scheduled for 1/21/2010.

Wow, talk about fast. I did manage to get another opinion at another major center nearby, and it was the same conclusion.

Had the surgery, got interim obturator 1/28, got out of hospital 1/31/10 with a peg tube. A few days later the doctors told me that the pathology showed some tumor cells existed in the margins and I would need Chemo, 3 rounds of Cisplatin, one every 3 weeks as an inpatient for a day, 6 weeks of Radiation

I will be starting chemo & radiation tomorrow 2/22, so I imagine this is the best that I will be able to feel for a while. As I said, I am new here, so not sure if this is the right place to post, but wanted to get myself out there to those in the know. They fitted me with my mask 2 weeks ago. I was glad that I had read a little about that beforehand here, or it could've been a lot more scarey.

I'm not really hungry, but do try to drink fluids at least. I've tried to eat some things, but it's not easy. Also, my jaw is not able to open as wide as it should. I may need to get a "Dynasplint". Has anyone used this?

I also wish there had been a "head" that could've been shown to me seeing exactly what would be done, and how things would work after that. It would've been nice to know ahead of time of all the added costs, and a way to spread them out some.

Oh well, I guess I am anxious about tomorrow. I hope there are a lot better drugs for nausea than I had in 1993. I was the "puke queen"; I don't want that nickname again.

I'm looking forward to your knowledge & support.

Hi Mary,

You are posting in the right forum for now.

Sorry that you have been through so much and have to go through more now. Any questions you might have regarding the surgery you had as well about obturators would be good to direct to Colleen whose screen name is August.

Go to her profile and send her an email or private message. She never had radiation or chemo, but knows a great deal about the surgery you have had and dealing with obturators.

Good luck tomorrow and through all of your treatment.

Mary,

wow, you are a survivor that's for sure...way to fight. Sounds like you've got a good medical team and things are rolling. Many have used dynasplint on here to help with trismus (trouble opening mouth) so you should be able to get some good feedback.

I'm sorry you had to find these forums, but you will find great, knowledgeable, caring people here and wonderful support.

Best wishes,

Eric

Hi Mary!

Sorry to hear about your battled with cancer. I had chemo 3 years ago and the drugs were really good at keeping it at bay for the most part. Emed was a godsend. I can ony imagine how hard it would have been to have these chemo treatments even 5 years ago when the drugs weren't as good.

Wishing you a full recovery. You sure have been through alot.

Kate

Hi Mary, I have had similar surgery, complete with obturator and radiation. Since I had clear margins I did not have to have chemo. I would be glad to answer any questions. I like you had wished they had explained more and were quicker with some of their recommendations. I was given a Therabite to use to excercise my mouth. I have to still use it and still can't open my mouth very good. Good luck with your journey. Feel free to send me a message to let me know how you are doing.

Sharon

Hi Mary, You came to the right place. I can tell by your poast that you are a strong woman. You will get through this. Any questions about rads and chemo ask away. I had 8 weeks of rads and 5 weeks of chemo. You can do it.

Mary, welcome to our family and the best for your treatment that begins today. You have had a rough go of it and must be a toughy . Keep us posted.

Thanks to everyone who has replied; I know I am in the right place here. Getting ready to go in for first chemo. Too bad they don't have "snow days" for these times, but then that would only delay the inevitable. I guess not knowing what to expect is part of the anxiety; I just need to get through it one day at a time.

Knowing there are others who have gone through everything and gotten through and are there for me is a great comfort.


Mary

Hi, Mary -

Good luck on your first day! I hope all goes well. I, too, had a maxillectomy/palatectomy, then chemo and radiation to clear up the perineural invasion. It was a challenge to get through, but it's been 6 months since I finished treatment and I have no residual effects of radiation or chemo. I have an obturator -- a more "permanent" one than the one they put in right after surgery -- and that remains a work in progress.

Please feel free to ask ANY questions you might have about the whole process -- chemo, radiation, obturator, anything that comes up! I'll be thinking about you as you embark on this next part of your journey.

Hi Mary.
Welcome to our little group, I'll be thinking of you today as you start your first day. It'll be fine, your a strong trooper!

You may also want to consider the Therabite device, which is also used to treat trismus. I have had great luck with the Therabite but have no personal experience with the Dynasplit.
Charm

I'll be sending positive thoughts your way as you fight this battle.

Welcome aboard. So sorry. As far as your concern to being the Puke queen again..........It was my experience the Cisplatin did not cause too mcuh nausea - nothing that the Emend could not control. You have already been through so much. My grandson had a bone marrow transplant and I saw first had how excrutiating GVHD could be. I am so sorry you have to deal with cancer again. Good luck.

Mary you will be fine, Just get the 1st day thru like you said then the rest will be the same. Just make the best of what has to be done. Drink and eat as much as you can for now while it is still easy.

Thanks to everyone who helped me not be so scared. There are lots of knowledgeable veterans out here with experience & wisdom to count on.

I just got out of the hospital. Radiation Mon. noon then chemo and LOTS of fluids overnight, radiation today. Back tomorrow for just radiation, then Thursday for IV fluids & radiation, etc. Busy, busy schedule.

I am not nauseous, just a little queasy right now. They said that I should make sure I take the zofran, dexamethasone, and other meds to make sure I don't get too much problems, and compazine if any breakthrough nausea. I am tired so I will take a nap. I guess it will get worse over the next week or 2, so again I appreciate any advice. I also must drink 80 oz. of fluids which will be hard for me. I think most will go through my peg, although I will drink some Powerade/Gatorade and some of my husband's Mocha coffee; mostly hot chocolate with some coffee. One day at a time for right now.

Thanks again for positive thoughts sent my way.

Mary,

I was told to drink 2 liters (68 oz.) per day. That amounts to 4 bottled waters (500 ml. / 16.9 oz.) per day.

I would get a case of water and then take out 4 bottles every morning. Before I went to sleep i should have finished all 4.

Ask your nurse if 2 liters a day is OK

Wow,, this is the 1st time that I have heard 80 ozs. I was told drink a lot but did do 8 bottles od Ice moutain a day which I just figured up. 16.9 oz each . No wonder the Drs liked me for drinking so much and no wonder why I lived in the bathroom. I still go for no less than 6 of them a day. I'm glad you aren't nauseous. I drink 6 coffees in the morning. Good luck Mary.

I would like to add that during Tx, once I became basically PEG dependent the Nutritionist had already calculated my essential fluid requirements into my Liquid diet.

I was on Nutren 1.0 with just 250 calories per can. When I asked about using some of the higher calorie stuff (fewer can to mess with) they politely said no because they wanted to make sure I was getting the fluids I needed (along with the calories).

welcome mary...sending positive vibes your way. hang in there.

Thanks for the info & help; This week was wild. Monday I felt dizzy when I went in & my blood pressure was 82/43. After a liter of fluid it didn't come up, so I was sent to ER where I received 2 more liters of fluid & other stuff to get my pressure up. Now I have eliminated Cozaar as one of my blood pressure pills. I still take metoprolol, but they are wanting me to check with internist if I could cut in half or eliminate as necessary. I was so wiped out that day so they skipped radiation. Tuesday it seemed like I was on the table forever and getting an anxiety attach. I now know that that is the day the doctors go over placement and it could be longer, so will need to psych myself up or take a half xanax.

Wednesday there was trouble with the computer not working right so it was also a longer day on the table which I didn't expect. Thursday was fine, I just for lost in the shuffle for a while, which was OK I was being well entertained in the waiting room. Today was taken care of before I could sit and out fast. This is the first time I have a 2 day break before back for radiation on Monday. Wow, Excitement.

My next inpatient chemo has been set for March 15. What has experience been with anyone? Does it get worse with the second, and third chemo, considering there is constant radiation to be reckoned with? Or do you manage to bounce back a little? This is the first day I haven't felt like sleeping all day. Not that I want to do anything crazy like clean my house or organize the kitchen, but it's nice to just get online for a little bit and be able to think clearly. I've been feeling pretty low energy and fragile lately, and don't want that to last long. I'd rather think good thoughts. Even the little sunshine we've had the last couple of days have been a nice touch.

Thank you all for being here, and I hope I can soon return these words of wisdom and hope to others soon.

Mary, I have gone nonstop since Aug 2007 and when I sat down to rest my eyes would close for about a half hour and then I would get back at keeping busy. 3 1/2 yeras later, if I am sitting about 3 PM, I still take a nap, not by choice, but from the treatments. Don't fight it like I tried to but take a nap when you need it. Good luck with everything. Yes, I exercise at least 2 times a day , doing 200 repitions per day . It seems to keep my mental attitude where it should be and makes my body feel better.

I'm a stage 4 survivor of tongue base SCC. Had CCRT one year ago and still cannot swallow - esophagus has complete stricture (it's blocked). Curious if anyone else has had this problem - docs say it's too dangerous to open the stricture and that my only hope is for them to build me a new path to the esophagus below the stricture so I can eat and drink. I don't want to do this. Any suggestions? JustJoe

just joe,
welcome to the forum. so sorry for your complications.
try and start your own thread, as it could get lost here. just go to introduce yourself and click on start a new topic.
i cant help you personally with your problem but others should be able to give you some advice.
hang in there.

Joe I have many troubles swallowibg but force it. I also have Barretts Esophagus that doesn't help. Get your throat dialated. This I have done.