I introduced myself in September prior to my surgery, but should probably re-introduce myself. I just had surgery to remove 80% of my tongue, received a flap from the pectoral muscles on my right side, had my mandible removed and replaced with the tibula from my right leg. I have a PEG and just started speach and swallowing therapy. So far I am able to swallow liquids the consitency of honey, but I am very encouraged by reading the posts from others who relearned to swallow and hopeful that I will someday enjoy some foods. Face to face at least some people can converse with me. I have trouble with G, K, D and I'm sure that we will find more. If my speach is not greatly improved, I will not be able to return to my management position and will have to figure out some other way to support myself. I do not have to make that decision until next spring though.

I would really like to hear from others who have the flap. I am not gaining weight and have dropped below 100 lbs now. I would love some suggestions on how to put more food in PEG. I am asking the Dr. for a higher calorie food. My next step in the treatement process is radiation. I am concerned about the effects this will have on the flap and my swallowing ability. One of my margins was very close though and the doctors say that radiation is the best option to keep this cancer from returning.

I am alone in this battle - my family is doing the best they can to support me, but they are all scared and don't really know what to do or say. I would appreciate some input from people who have had these same or similar experiences. Thanks.

My experience has been quite different from yours so, I can't help with any practical advice. Just want you to know that you are in my thoughts and wish you well.

My husband had a similar experience with weight loss following his surgery. Through advice given on this board we found Carnation VHC which has 560 calories a can. My husband puts 3 cans of this and 3 cans of Jevity 1.5 in the peg everyday. He has gained weight back and maintained it for quite some time now even still being on chemo. Ask your doctor about it but you can order it yourself from Amzaon.com and some of the proceeds go to OCF. We, however, get it from the company that supplies the feeding pump and the Jevity as our insurance covers some of the cost. Keep coming here, the advice is priceless.

Sue

Good1,

I also had a chunk of my tongue removed, although I did not have to have any bone removed, and people tell me my speech is fine. I was very lucky in that the surgeon didn't have to remove the tip of my tongue, so my diction is still very good. As far as the effect of radiation on the flap, mine did swell quite a bit and almost three months out, it still feels very full in my mouth. I do hope it goes down - it was perfect before the radiation, but like everything in this disease, I'm waiting and watching.

As far as weight loss vs. gain, do ask about the Carnation VHC, its good stuff! Also, does your treatment center have a nutritionist that you can talk to? Preferably one that deals with oral cancer patients. There are lots of ways to add calories to the foods you can eat and lots of recipes for folks trying to gain weight after cancer treatment.

As far as your family, I can only say the burden ends up being on you to reassure them that you're okay. That part of being a cancer patient is, in my experience, the hardest. Try to let them know that its okay to be scared, that you are too, but that you're gonna fight and really need their support to do that. I also think its good to let them know that saying anything is sometimes better than not saying anything at all if that's how you're feeling.

Good luck, and welcome to the OCF. This is an amazing and wonderful resource with some amazing and wonderful people.

- Margaret

If your insurance won't cover VHC (It's for oral ingestion, not PEG, so some don't cover it), I recommend Nutren 2.0 (500 cal/can) -- You can also drink it, unlike some of the PEG foods -- I don't like the taste but found adding two tbsp of Nestles Nesquik makes it taste good and adds 60 cal/serving to bring it up to VHC.

I'm having troubles with T, L and X on a regular basis and different combos if my mouth is too wet or too dry. I find myself generally more understandable on the phone than in person; I presume that's because folks are confused by my somewhat different non-verbal signals -- Sounds coming from my throat may not be reflected on my lips.

Get a feeding pump, if you don't already have one -- You can run it at night when you are sleeping to get more PEG time (AKA multi-tasking!). If insurance doesn't cover it, look on EBay for Kangaroo Pump and an IV stand.

You WILL have troubles with swallowing issues with radiation, so be prepared for that -- Best advice is to keep swallowing as much as possible, even just water, and also exercise your mouth range by opening it as wide as possible as often as possible -- Try now and see how many stacked fingers you can fit in to gauge progress or lack of it.

I'd also suggest that you teach your family that it's better to say the wrong thing than to ignore the victim!

Thank you - I will bring this up to the nutrionist next week. 560 calories sounds like it would help me a bunch.

Thank you so very much for the advice and for sharing your experience with the radiation. I am afraid of what might happen to the progress that I have made so far, but I know that I have to do everything I can to stop this from coming back again. Twice is enough for me. I still can't believe that it came back this time. I honestly thought that it was over and done with after my first surgery and radiation.

I am so happy to find people who have been where I have been or where I am going to converse with. It means so much.

Yes it is an amazing and wonderful place and thank you for your response. I can not describe how it feels to find people like me to talk to.

I was getting 4 cases pf VHC bi-weekly unil my Ins said they didn't cover nutrition food. It's too expensive to take VHC now, but it did help while I got it from them. Welcome to the OC forums.

Welcome again however I am sorry to see you had to introduce yourself again after your recurrence.
Other than all the medical issues you are again going through as Pete suggests you need to involve your family in your battle.
If they do not know what to say just tell them that they can ask and discuss anything about this with you.
Also, even if you cannot resume your management position in the company you work for now will they not offer you another position?? One that would not require you speaking as much as I presume you need to do in your present position.
Gabriele

Hello

Welcome to OCF. First let me tell you, that now you will not be alone any longer. You have found OCF and have a whole new 'family' to help get you thru this. Check out some food ideas listed under Menu ideas, that may help you with your nutrition.

Good1

Sorry to hear of your recurrence.

Unfortunately I have had 2 tongue flaps, the first performed when the tumour was removed and the 2nd reconstruction was required because I ended up with mandible Osteoneocrosis, so they had to re-do the tongue flap because the rads had done irrepairable damage.

Thank goodness this is not a common occurance and in my case was probably due to my teeth near where the jaw split was done, but that is a whole new story....

I was surprised that over time my speech improved quite a bit after my rads - and people who I spoke with (who are very honest with me) would notice the difference. I have had to adjust again to a totally different mouth structure following the 2nd flap. It certainly takes time to become accustomed to the changes but surprisingly enough it does happen. Alot of patience is needed that is for sure, because it is a long slow process!!

The majority of my current tongue flap is 'stuck down' from all of the front right down one side so obviously I have very restricted mobility. Even though the front tip of the tongue helps to make the majority of sounds I am still able to speak (certainly not as clearly as before the OC) and only seem to sound really muffled if I speak too quickly (quickly being the old normal) Therefore with alot of words I have to say them slower and they do come out alot clearer.

Hopefully in the near future I will be starting the process of getting bottom teeth implants and my tongue flap will have to be thinned out at the front to allow the fitting of the implants, following that my mouth will take on a totally different structure again, therefore I will have to basically start all over again.

It is amazing how we compensate when we have to.

No bull dust, it is very difficult and sometimes very depressing and upsetting but I just keep plodding along, clawing my way back step by step unfortunately with some unforseen setbacks but nevertheless we do keep trying. It will be well worth it that is for sure to be able to eat something substantial again and be able to go to my favorite restaurants ....

If you have any questions that you think I may be able to help with please do not hesitate to send me a PM - personal message.

Karen

Welcome. My surgeries sound significantly different from yours, but I am here to help in any way I can. I loved the post earlier that said "you are not alone anymore". That is so wonderfully true about the support and understanding you get from the OCF "family". Keep posting and I'm sure someone will be able to help.

Donna