Hi all,
It has been a while sense I have posted so if I repeat any thing sorry. Bob had his surgery the third of Nov. They took the left side of his mandible, replaced it with his pectorial flap. They also took a small piece of tongue, 27 lymph nodes, left saliva gland, and of course the left retromolar trigone mass.

The outcome was no-bone invasion, no salivia gland invasion,and no node invasion. Yea!!! The perineural nerve had invasion, the turmor was so large that it invaded the deep skeletal muscle,it was moderately differentiated keratinizing scc. The surgical resection margins all negative and it is 0.2 from the closest posterior margins. Staging pT4aNOMx

Bob has a peg tube,chest port, and a whole lot of battle wounds. He had 2 fistulas, all clear now. We started chemo and radiation today. Bob did pretty good it is 7:30 and he hasn't gotten nauseated yet. I know we are about to hit some hard times real soon. But for right this minute we are ok. I almost forgot we are approved for SSDI. YEA!!!

This is the best place to come for answers and support. I do read a lot of the older posts, it helps me know what to expect next. I do have some questions. First what does kertinizing mean? Is 0.2 a fair distance from the closest posterior margin? Bob is having 38 rounds of radiation and he is getting 6300 rads ( if I wrote that right). He is also getting 189 mlgrams (I know the 189 is correct, please correct me if I have mlgrams wrong)of cisplatin every 21 days, for a total of 3 times. Is that a normal amount for each one?

It feels good to be taking sometime to finally write again. I also am taking one night class twice a week. On those nights my sons will help if necessary with thier father. It helps to bring a little normal life to the crazy one that was brought to us by way of SCC.

Thanks for your help,
Deb

Hi Deb. Congrats on no bone invasion! The 3 large doses of chemo is how I was given the cisplatin too. Do not be surprised if the 3rd dose is cut, that seems to happen to alot of us. The second dose I got was cut significantly back too. There shouldnt be any signs of nausea for a couple of days. Then look out! I would suggest that in about 3 days to watch Bob closely for nausea and at the first stomach flutter give him anti-nausea meds. Once you get behind on this there is no catching up.

Congrats on getting the SSDI. Its simple to get if everything is documented.

Best wishes with everything.

Just want to give you words of encouragement. Being the caregiver can be rough, but I will tell you it brought my husband and I closer than ever. I hope that is what comes of your time through this also. I saw that you are a writer, what is it that you write? I too am a writer, mostly articles for magazines. Cancer has given me more than enough ideas and stories..that's for sure.
Like Christine said nausea shouldn't be too horrible this first round, might get a little on day three or four. Eriks best days were always chemo days. Then it sorta went downhill around day three. Keep up the good attitude.

Caregivers ROCK! My husband was my rock - he did it all for me and I am eternally grateful. We too, are much closer after this life experience. I was lucky - the Chemo never made me sick. They prescribed 3 seperate nausea meds to be taken at different times - and it worked for me, no nausea.

Wow, you sound like a dr with all that info! Am I bad not to know all of that stuff with Ron? I'm sure they told him things he never relayed to me since he said he didn't need/want me to go to the apts with him, plus I need to work, since I'm the only provider really and he has been on SSD and Medicaid/care since 08 right after he came out of the coma for his Non Hodgkins I was at the Social Security offices and Welfare like White on rice! And he got it right away, I feel bad for those who are still fighting to get it, maybe we just got that lucky? Yes it's gonna be rough, thank God Ron didn't need any chemo, but we did go thru 7 months of it once every 3 weeks so like once a month when he had non hodgkins. and he only got sick vomiting the last round in July, thank God I wasn't working cuz he woke me up like it was a thunderstorm and I couldn't go back to sleep. that was his only time sick from chemo. he's a very lucky man I say from all he's been thru. he did have anti nausea pills too. Good luck and keep in touch here and any questions or concerns or just want to vent come on back and let it rip!
Good Luck and God Bless!

Thank you all for all your feed back.
Christine, today Bob did feel queezy. I gave him his meds,I told him you said to stay on top of the nausea. He said, he is starting to feel better and he hasn't gottten sick so far crossing my fingers. Thank You.

Jennie, Sorry -I left out, I can finally write "on this board" again. No I am not a writer, but I am keeping a journal I call it Bobs Cancer Journey. I work in child care.

Carmen, It is great to here that you didn't get sick, there is hope.

SUEZ, Bob doesn't really want to know all the ins and outs of whats going on. I think it worries him, so that job has become mine. Don't get me wrong, I would have done it even if he wanted to know. I do work but my hours are 5am to 1pm. That has allowed me to be there for all appointments. For this I am grateful.

Question- Bob is starting to burn on his face, what are some really good meds to give, or should he not put anything on it. Also we are being treated in the VA.(So far the care has been great!The exception being the pharmacy) What are some meds you think we will need. We have to order ahead of time, other wise they want to mail them to you. I am sure the docs have thier opinion, but you all have been there on a personal basis so you know what really works.

Thank you
Deb

Alex and I are masters of cisplatin having had it at full dose for 4 rounds during chemo and baby doses weekly during radiation.

The advice I would impress upon you would be to keep him hydrated. Nausea is a devil too, but you have received enough good advice on that.

we were not allowed to leave the ward unless Alex had peed some enormous amount (800mL I think) and we learnt very quickly to start our chemo round with a very large coffee, followed by 6 little cartons of apple juice so the peeing could begin. Keep the water going at home too, as hydration was the most important thing for Alex to feel "well". Someone mentioned that their partner's best day was chemo day. So was Alex's. Partly because the last dose of cisplatin had left the system and the next dose hasn't kicked in yet, but I also believe that on chemo day, is also your best hydration day. You get force fed lots of fluid either by drinking it or via the IV.

The dose of cisplatin is dependent on body surface area and is calculated using weight and height (now you will know why the nurses keep asking for height and weight). It is described in milligrams or mgs so you were right about that. Your dose of 189mgs would be standard for your husbands size.

Keratinizing is just a way of describing the way your husbands tissue is behaving (quite common). Cancer often changes the way cells grow and sometimes the cells grow sort of thicker and harder. Moderately differentiated means that they can see the structure of the cancer is different to the surrounding tissue but it's not completely weird. That would be poorly differentiated which is not good.

Getting clear margins is good but unsure how clear they need to be. This is moot really as you are doing radiation and chemo which will mop up any stray little buggers.

It is also good that you are going to try to take night classes. My Alex spent so much time asleep or just lying there feeling miserable, that he was quite happy to have no audience. Provided your own responsibilities don't take over, this would be a good outlet for you. In my own case, I was so stressed over dealing with the finances, the bureaucracy, insurance and crazy hospital red tape (another very long story) that my "time out" was spent formulating battle plans, researching alternatives and writing scathing letters. When I had none of those to do, I came here and vented or just collapsed in front of the TV. Shows I had already seen were good, so when I realised I had drifted off with some other train of thought, and hadn't been paying attention, I could pick up the thread of the story.

I too, had "chemo brain"

Good luck, remember that thousands have come out the other side It will get better. Eventually.

Ask the doc for prescriptions for BetaVal cream and Magic Mouthwash. The cream is to put on the burn area of his face and neck. Never put it on before going to radiation. I would apply it as soon as I got in the car for the ride home. Have him apply this several times per day, pat it on and let it soak in, do not rub the sensitive skin. After a shower, he should apply this too. Also at bedtime make sure he puts on a nice thick coat of it. Magic mouthwash comes in a few different types. Mine was made of benedryl, malox and lidocain. It is to help with mouth sores which will begin appearing anytime. To use, swish in his mouth about 15 seconds and spit out. It will numb his mouth so he is able to eat. Other meds could include the fentanyl pain patch and meds for break thru pain. Keep a watch on the pain level and dont let it get out of hand. Nobody needs to go thru this in pain, that only makes things worse.

Keep up the hydration and nutrition. This will play a huge role in how your husband reacts to treatment and will feel.

Karen and Christine, bless you both!!! I am now on the worried side, at least with this info I can begin to help him phyically. Emotionally,well that is going to take some time. But I am up for that to, what ever it takes 27 years next month and still going strong.
Thank you for your help really
You all are the best
Deb

Dont worry Deb, we will help you with all of this. Being a caregiver is a difficult and sometimes thankless task. Congrats on 27 years!!! You both can do this and then move on and celebrate many more good years