Posted By: sandy1923 status post surgery - 10-27-2013 05:50 AM
Status post mandiblectomy with fibula falp x 6 days waiting on path reports....scared, scared and pain.
Posted By: ChristineB Re: status post surgery - 10-27-2013 12:40 PM
Make sure to get pain meds to control the pain. If its not enough, tell the nurse, then tell the doctor. Get some action! Dont suffer in pain!

Every day after this major surgery will be a tiny bit easier than the day before. Hang in there!
Posted By: n74tg Re: status post surgery - 10-28-2013 12:07 AM
Hi Sandy:
I sent you a reply this morning, but Christine was responding at the same time, so mine got ejected into outer space. So, let's try this again.

I'm sure you are scared witless right now. The surgery you just underwent is a major thing, and I'm sure it brings with it lots of pain. I can't even imagine what you are going through, but I suspect the high level of pain is probably one of the things that is clouding your judgment and making you the most scared. Will it ever go away - how long can I stand it - and a thousand other questions like it.

But, what I can do is be the outsider looking in and hopefully give you thoughts to help you get through each hour or each day, one at a time. Make no doubt about it, IF you are looking long term right now for the day you will be back to normal, with no or little pain, the light at the end of that tunnel is either not there or so dim as to be scary.

So, what do you need to do right now. Believe it or not you already know the answer. If you've read the OCF literature and others posts everyone keeps saying find positive things to take your mind OFF your troubles, even if it's just for an hour. Getting through this hour by hour, day by day is how we do it, and with the help of pain meds if necessary.

I've suggested to others to make a list, write it down and post it on your front door, so that when you are gripped by fear or panic you know where to walk too and read you list.

Some suggestions for the list - Join that internet movie rental company (I can't name it as that's advertising on the forum). In the Friends forum we have a movie and television show list of things you might not have seen yet, but that were found good by other forum members. All those shows are available for rent on the internet. Best thing of all, no commercials.

Likewise, Youtube also has a lot of stuff worth watching, particularly full shows by good comedians. Robin Williams, Kevin Hart, Kathleen Madigan, all the Redneck Comedy Tour guys (Foxworthy, White, Cable Guy and Engvall)

There are a LOT of full length music concerts on Youtube. My favorites are the Phil Collins concerts, but there are lots of bands available. I'm talking full length concerts here, the same ones people payed lots of money to buy tickets to go see.

Youtube also has full length movies. Type Armageddon into the search window and then look down the right side at all the others available.

What do all these things have in common? You don't have to go anywhere to do them. And for the most part they are free.

Go outside and just watch. Listen to the wind in the trees, feel the warm sun on your face, listen to the kids playing in the neighbors yard. Invite your neighbor over for coffee, but don't talk about cancer. Learn how to do something new that you don't know yet. You can learn anything on Youtube. I learned how to weld on Youtube. that might not appeal to you, but how to cook the perfect souffle might, or how to knit or crochet or even how to play bridge is there (I am a bridge fanatic, so I know what's on the internet)

Sandy, you can get through this, you will get through this. Just remember, it's one day at a time. If that's too big, it's one hour at a time.

Stiff upper lip girl.

Posted By: ngk Re: status post surgery - 10-28-2013 01:25 AM
Said a prayer for you. Hope you're going to feel better each day.
Posted By: Cheryld Re: status post surgery - 10-28-2013 02:51 PM
A mandiblectomy is a heavy duty surgery not surprised you're in pain. I imagine unless you are out cold it will still hurt some despite the meds you're on. That said I would make them aware of your pain. Not all medications work the same for all people a oxy puts me to sleep morphine goves me weird dreams - neither kill my pain, meanwhile 85% of the planet LOVES oxy... Go figure. They could try and find something that works better for you. wink hugs! And fingers crossed your path is clear of bad news. smile
Posted By: sandy1923 Re: status post surgery - 10-28-2013 04:24 PM
Monday is here and waiting for the doctors with the path results have you noticed when you want them in your room you get nothing but when you don't they are there on the hour. Trying to keep my head about me today I did overhear I will be keeping my trachea for at least a I have to decide whether I want to go home with it or to a SNF. Any suggestions. Yes meds are my friend and it looks like movies will be too.
Posted By: ChristineB Re: status post surgery - 10-28-2013 11:20 PM
Hope you got the possey muir valve trach. If not, ask for one now. Its the valve up top that makes the difference and wil allow you to talk. I think that would be a huge hurdle to get over and make you feel instantly better just being able to communicate easier.

When I went thru the mandibulectomy, I had complications and a very difficult time. Most patients who have no complications are out of the hospital in 1-2 weeks after that type of surgery. Of course it depends on how invasive the procedure was along with how easily the patient is getting along with their recovery. I was stuck in the hospital for 2 months with the first 3 weeks being kept in a medically induced coma. Lucky me, huh? Anyway.... I had my son to help me when I got home for the first month and then he went into the Marines and I was left to my own devices. If you have help at home then go home, if you cant depend on someone to be with you almost 24/7 then go to the facility. It takes ALOT of care, especially the first month. Gosh, just getting the feeding tube schedules down can be enough to wear you out when you are just out of the hospital. I know you probably want to be home but please be smart about this and dont rush going home. Its not easy to take care of yourself after a mandibulectomy. You probably have staples and skin graphs and all kinds of bandages on wounds to tend to and you really would do better if you have someone (skilled) there at the push of a button.

Hang in there!!! We are you new best friends and will help you get thru this rough spell.


Posted By: sandy1923 Re: status post surgery - 10-29-2013 01:50 AM
I am blessed so far no complications....also no results. I feel this will make a difference in how I decide. Can't really explain. Really depressed which is not usually me or my attitude. Just feel so much... Thanks for your courage and hugs...
Posted By: KP5 Re: status post surgery - 10-29-2013 03:00 AM
It is so much to feel. Completely overwhelming when you look at the big picture, but one day at a time is a little easier. Glad there have not been any complications. Keep posting, we are here!
Posted By: sandy1923 Re: status post surgery - 10-30-2013 05:19 AM
The path results are in and they are clean.....feeling very blessed today. Now onward and upward to a SNF....that alone scares me but my journey thus far has been crazy,scary painful I know you all understand. I take my hat off, stand up to applaud, celebrate all of make this doable. Thank you thank you thank you.....
Posted By: sandy1923 Re: status post surgery - 10-30-2013 10:01 AM
Arrived at SNF...12 hours later have only received I dose of pain meds. Staff arrived at my bedside asking me who I was, oh wait were you here on my last shift...fighting to get out....FAST.
Posted By: sandy1923 Re: status post surgery - 10-30-2013 01:39 PM
First night at SNF what a nightmare. Trying to get homeheath mainly for trach care and peg supplies....any suggestions welcome.
Posted By: ChristineB Re: status post surgery - 10-30-2013 01:52 PM
The trach needs daily care. If they arent doing it then speak up and advocate for yourself!!!

Can you talk?

Do you have anyone who comes and stays with you? a friend or relative?

Sounds like you need to get someone there to help you get the very best care. Always remember and dont let them forget...they work for YOU. If you have to be a squeaky wheel to get proper attention, do it.

Hopefully you wont be there very long. Good luck!
Posted By: sandy1923 Re: status post surgery - 10-30-2013 02:10 PM
I had gotten a great semi permanent trach with passey Muir the day before I was d/c I arrive here they want to take out and put in the one with the disposables because they don't have the cleaning trays, my husband and promptly sat down and cleaned it with supplies we brought from the hospital this situation is surreal...I am trying to talk to anyone who will listen. Waiting for husband to arrive to call insurance company case management anyone who can help. Thank you Christine for letting me know I'm still heard.
Posted By: ChristineB Re: status post surgery - 10-30-2013 06:26 PM
Im glad you arent by yourself! Also happy to see you have the possey muir valve trach, I dont know why that isnt the standard for trach patients. Let your husband be your advocate. He can also ask us any questions and we will help him as well. Dont worry! You will get past this bad period and things will get easier. Im in your corner, lean on me if you need to and I will help you get thru this.

Posted By: Cheryld Re: status post surgery - 11-01-2013 03:52 PM
So glad your clean and on the road (even if it's a bit rocky ) to a recovery - Hugs!
Posted By: sandy1923 Re: status post surgery - 11-12-2013 05:04 AM
Hi everyone just got home after 11 awful days in the SNF. I have never felt so vulnerable and afraid. However those days are behind me and I'm greatful to be home. Onward to the next chapter of my recovery. Scheduled for another surgery mid December and this week I meet with the oncologist to discuss radiation. My biggest issue right now is pureed foods. I'm trying to use my gtube for meds only until I don't have a choice. Any suggestions. Thanks for being here. Sandy
Posted By: samkl Re: status post surgery - 11-12-2013 09:16 AM
Hi Sandy, wanted to put my bit in with a quick g'day. I'll be following your progress and celebrating every step forward. Watch out for constipation from the pain meds, and try to take one day at a time. My very best to you, dear.
Posted By: davidcpa Re: status post surgery - 11-12-2013 01:16 PM
Sorry, what's SNF?
Posted By: Anne-Marie Re: status post surgery - 11-12-2013 05:34 PM
SNF: Skilled Nursing Facility or Saturday Night Football?
Posted By: Cheryld Re: status post surgery - 11-12-2013 06:13 PM
Hi there... can you eat orally? You could make smoothies. Mashed potatoes, soft scrambled eggs - with cheese... what are you allowed to eat and what are your limitations? Is it swallowing or maneuvering the food? so glad you got through surgery okay. wink
Posted By: sandy1923 Re: status post surgery - 11-13-2013 06:08 AM
Skilled nursing facility sorry about that. Yes it was horrible the first night ( I had only been there maybe hour) I overheard a staff member ask another staff member " man, what's wrong with her face". I was horrified. Not because my face was swollen and looked uneven but because I was expected to entrust my healthcare to these people. I did speak up and some changes were made but unfortunetly the tone had already been set. On a more positive note I'm happy tto be home,I'm happy to have my trachea out. Trying not to stress about radiation or my next surgery. Again thank you for having this forum. I can't find the words to express how grateful I am for this outlet.
Posted By: sandy1923 Re: status post surgery - 11-13-2013 06:23 AM
Hi Cheryl yes I can eat pureed foods only. Swallowing is ok but absolutely no chewing. During surgery they had to remove teeth and right now my jaw is very unstable. I have a g- tube which I use for my meds and for some feedings. I am trying to eat as much as possible orally with the expectation that once radiation begins that I will be using the g-tube as my primary means of getting nutrition. Thank you for the suggestions, believe it or not I hadn't thought of scrambled eggs. Thanks again. Sandy
Posted By: davidcpa Re: status post surgery - 11-13-2013 02:08 PM
It's hard to believe but I bet all of us have had to endure idiot comments from our health care practitioners at some point during our Tx. I know I had to and even ended up speaking to the President of Moffitt's hospital and she was the one that called me.
Posted By: sandy1923 Re: status post surgery - 11-14-2013 08:34 AM
Congrats on taking first place in your age group. An awesome accomplishment.
Posted By: sandy1923 Re: status post surgery - 11-19-2013 06:09 AM
Meeting with the oncologist tomorrow. Radiation or post radiation scares me. I have read so much about the side effects I question whether I should have it. I was blessed with my pathology results. I realize I'm not the professional and ultimately it is my decision. So very confused. Not even sure what questions to ask.
Posted By: Anne-Marie Re: status post surgery - 11-19-2013 10:46 AM
Sandy - Regarding the Rad side effects - it does help to be prepared for eventualities, but remember that everyone is different and just because something is possible, it doesn't man it will happen. So when the "what-ifs" attack, try not to give them too much time before you switch to the more positive probabilities which is more productive and less stressful. I don't have your experience to be able to suggest what questions to ask, but whatever your doctor recommends, I would ask him/her "Why?" and ask for more details and also tell him how you are feeling in case he can help reassure you or has meds to help with the stress. If you go over info on the main pages of OCF or use the search boxes, it may give you some ideas about what questions to ask of your doctor, or for us here. About the staff member's unthinking comment, I would love to have asked her "What's wrong with your brain?" She must have been absent the day they discussed bedside manner. Hope everything goes well with your Oncologist meeting.
Posted By: davidcpa Re: status post surgery - 11-19-2013 02:11 PM

Please do what your docs advise. Get a second or third opinion from a CCC if you want but don't take shortcuts with this cancer. As Anne Marie says everyone can be different and some breeze through radiation. Most of us do have a rough time but it's usually only 6 to 7 weeks and believe me that's nothing in the grand scheme of life experiences. I had a rough time but I didn't have the sage advice of this site until 3 weeks post Tx and trust me this site's advice can make a world of difference in one's treatment if you keep us informed and listen to our recommendations.

Let us know what they say.
Posted By: PaulB Re: status post surgery - 11-19-2013 03:02 PM
I fear chemo more than radiation, still do. Radiation was doable, did it several times, but still difficult, but no where near what chemo did or can do acutely, even long term. Chemo put me in the hospital, acute care facility for 6 months, and have plenty of stories from them both. Usually the optimal wait from surgery to radiation is 4-6 weeks, but could be longer based on your healing.

Good luck with everything.
Posted By: Cheryld Re: status post surgery - 11-19-2013 05:04 PM
It really is an individual experience. Everyone's overall health, genetic make up, stamina etc... comes into play. Personally I wanted to know everything up front, planned for the worst hoped for the best - chemo was nothing for me - a little nausea, rads was HIGHLY UNPLEASANT, but doable. Some would say complete hell.. it really depends on you.
Definitely do what your drs suggest. They have the knowledge and experience. Educate yourself on what is normal treatment for your stage and type of cancer and if what they suggest doesn't match this ask why? As someone said.. short cuts aren't something you want to take a chance on with cancer.

hugs and best of luck.
Posted By: sandy1923 Re: status post surgery - 11-21-2013 07:42 AM
Hi everyone today was my appt with the oncologist. Very uneventful, very frustrating. Referred to radiation specialist at City of Hope. Another day of hurry up and wait. I do have a question about G-tubes. Mine really hurts/burns periodically at least once or twice a day. I've asked the Dr.waiting on the referral to the GI doctor. It almost feels like its to tight?
Posted By: ChristineB Re: status post surgery - 11-21-2013 09:46 AM
Ask the gastro doc to loosen it.

Make sure you keep it clean. Sometimes they will leak a little. After showering daily, swab a small amount of neosporin or silver sulfadine (prescription) cream around the site and keep covered with a drain sponge.
Posted By: Cheryld Re: status post surgery - 11-21-2013 02:44 PM
Christine is the master of PEG info. I defer to her... burning to me sounds like you might have a bit of an infection though so do have it looked at. hugs.
Posted By: PaulB Re: status post surgery - 11-21-2013 03:03 PM
I get the burning, had an infection, that made the skin raw, and the stomach acids seep out a little at night when I'm on my side sleeping. As suggested, washing, drying, I use peroxicide sometimes after, then cream either Bactrim, neosporin, or anti fungal, depending on infection the doctor prescribed, turn the tube to another position, and gauze under, over button, which helps, but I'm not 100% following through.
Posted By: sandy1923 Re: status post surgery - 11-29-2013 04:47 AM
Irritated with the insurance companies, radiation specialist denied...guess ill be making phone calls on Monday. Tired of the politics..
Posted By: PaulB Re: status post surgery - 11-29-2013 01:47 PM
Insurance, premiums, denials, lack of payment, the planning, future coverage, hurry up and wait, is sometimes worse than the treatment. Whatever it is, keep on top of it. Appeal, read your benefits packages cause no one else will, and if you don't, you might not get what your entitled to.

Good luck.
Posted By: gmcraft Re: status post surgery - 11-29-2013 08:27 PM
I would only add to what both PaulB and Christine have said about a possible leak. We have just dealt with a similar situation. John went and saw a stoma-therapist who recommended putting a barrier cream like Pro Shield to stop the stomach acid from burning the skin. John also got antibiotics from his GP which cleared up the infection. Now five times a day he does a saline soak, then he lets it air dry for a few minutes (the intervention radiologist even suggested using a hair drier to dry it -- apparently dryness is the key). He then puts a bit of anti-biotic cream followed by the barrier cream and the dressing. In only four days it went from burning, raw and bleeding to properly healed skin. The intervention radiologist saw him today and was pleased. Hope this helps.
Posted By: PaulB Re: status post surgery - 11-29-2013 08:58 PM
Good info Gloria, Since I had the antibiotic infusions for pneumonia in October, I have not had a problem. Difficult to distinguish, one doctor said it was fungal, another bacterial, maybe it was both?
Posted By: gmcraft Re: status post surgery - 11-30-2013 02:02 PM
In John's case, the stoma (insertion point) became bigger than the tube. This caused quite a bit of leaking of the stomach contents -- hence the infection and the burning sensation. The intervention radiologist confirmed that if the stoma is kept dry and clean, it will grow back to its original size and the leaking will stop.
Posted By: sandy1923 Re: status post surgery - 12-02-2013 11:25 AM
2nd surgery scheduled for Dec 17th. Haven't even finished recovering from the first...Not enjoying being me....yet still feel blessed in general.
Posted By: sandy1923 Re: status post surgery - 12-05-2013 07:07 AM
Strange question. Is it normal to feel and look bloated from my g tube. My tummy feels rock hard and how can I get rid of this? Any help would be greatly appreciated.
Posted By: PaulB Re: status post surgery - 12-05-2013 12:56 PM
I felt bloated while on the tube with Canned nutrition. It could be too much air getting with the feedings, gas, constipation. Ask your doctor about some laxatives to take, drink more water, move around, and there are fruit and vegetable drinks that help too.
Posted By: Cheryld Re: status post surgery - 12-06-2013 03:01 AM
I would have it checked.
Posted By: sandy1923 Re: status post surgery - 12-09-2013 11:51 PM
Completely frustrated, my primary doctor acts like she's afraid of me. On 4 seperate occasions she asked when I was seeing my surgeon again. She felt my foot and stated all was fine ( even though it twice the size of my other foot and the swelling goes all the way up my leg to my knee. Aghhhhh I guess when you graduate last your still a doctor! Sorry that was rude but I am extremely frustrated and in pain. Started Nexium for the burning so far no change.Im waiting for radiation to start, hopefully sooner then later. Tired of the waiting game. This experience has taught me that I am not a patient person. Staying calm and keeping it together, sorta!
Posted By: PaulB Re: status post surgery - 12-10-2013 12:41 AM
The edema can be caused by many things, inactivity, infection, other medical conditions, so you may want to have it checked out by another doctor.

Good luck with everything.
Posted By: Cheryld Re: status post surgery - 12-10-2013 03:23 PM
Hon... I would get another dr. if possible. Not sure how mobile you are or if your leg is red and warm... but there is the potential for DVT (deep vein thrombosis) this causes swelling, redness, warmth and pain. Whatever the reason you need this looked at and taken seriously. It could very easily be a matter of the fact that you might be sitting a lot and putting pressure on certain veins an arteries... but regardless you want a definitive answer.
A dr. can feel guilty (my dr did at first) He didn't want to tell me I had cancer (he is an amazing dr. and has known me for years) He said I don't like giving news like this - I told him I would much rather hear it from him... someone I know and trust than a specialist who doesn't know me from Adam (plus the specialist he sent me to was an IDIOT) He was also fantastic moving me along to different scans and finally to the specialist of my choice. I really do love the man. If you do not feel confident and happy with who is treating you - get out NOW. This can only be a bad thing. hugs
Posted By: sandy1923 Re: status post surgery - 12-13-2013 08:10 AM
Monday 945 radiation specialist? No idea what questions to ask. This may sound strange, but since I found out about my cancer, radiation has scared me the most.
Posted By: sandy1923 Re: status post surgery - 12-17-2013 02:07 AM
Met with radiation oncologist. I am now the lucky contestant for 35 imrt treatments. Feeling overwhelmed, Treatments to start in January, surgery again tomorrow....
Posted By: Mamacita Re: status post surgery - 12-17-2013 02:41 AM
For me, waiting for treatment to start was the worst. The good news is that radiation is over in a short time, less than 2 months. It helped me to remind myself of allllllllllllll the people on this site who made it through, many with grace and spirit intact. The side effects come on slowly and your medical team and folks here will have strategies and ideas to help you cope. You can do this!
Posted By: PaulB Re: status post surgery - 12-17-2013 02:57 AM
Good luck with surgery tomorrow.
Posted By: Cheryld Re: status post surgery - 12-17-2013 05:09 PM
Good luck with the surgery and REALLY enjoy the holiday foods.. you will get through rads. hugs
Posted By: sandy1923 Re: status post surgery - 12-18-2013 06:46 AM
Successful surgery....yeah! Unfortunately my jaw is officially wired shut. Liquid diet...boooo! Trying to squash the fear my RO noticed some swollen lymph nodes on my left side. I wish she hadn't. Anyway ready to take this radiation and fight.. so very tired of being sick and tired.
Thank you for all the well wishes.

Ps any suggestions on which liquid nutrition has the best results.
Posted By: Cheryld Re: status post surgery - 12-18-2013 04:01 PM
Good luck my dear and hopefully you will heal up quick. You have been through alot hopefully the nodes are NOT cancer related but just swollen and badly behaved nodes that are inflamed and angry. hugs
Posted By: sandy1923 Re: status post surgery - 12-18-2013 05:46 PM
Thanks so much for the well wishes cheryl. Happy holidays to you and your family
Posted By: sandy1923 Re: status post surgery - 12-31-2013 10:00 AM
Freaking myself out. I recently found out the stage (2a, apparently very aggressive). Every article that I have read suggests chemo and radiation therapy. None of my doctors have suggested chemo, I start radiation as soon as the dentist clears me. I'm not wishing for chemo, but I certainly don't wish for my sarcoma to make a repeat performance. Not sure how to ask the doctors without " insulting" them. Trying to stay positive.
Happy New Year to Everyone! grin
Posted By: davidcpa Re: status post surgery - 12-31-2013 01:43 PM
Not sure where you are getting the Tx but you can always get another opinion from a CCC.
Posted By: donfoo Re: status post surgery - 12-31-2013 07:11 PM

You will not be insulting your doctor by asking a question that is based on research you have done. In fact, most doctors appreciate a patient who is informed and engaged.

Just state your research and reading states most all rads are done concurrent with some form of chemo, preferably a platin like cisplatin or carboplatin. It seems your treatment plan does not include a platin and wonder what the rationale is in your case. I am certain he/they will gladly offer their reasoning.

Best to you with your upcoming treatments.
Posted By: PaulB Re: status post surgery - 12-31-2013 07:42 PM
Although sarcoma can have some common areas with SCC in the head and neck, sarcoma is a different cancer, and may be treated differently than most cancers here, but I'm no expert. Surgery is the mainstay from what I understand, but some sub-types respond to radiation, chemo, and see targeted therapies being used. As suggested, ask your doctor any questions, get a 2nd opinion if you want, check out the top CCC, like MSKCC, and see what they're doing for different sarcoma's, join a sarcoma support/blog group also.

Good luck.
Posted By: sandy1923 Re: status post surgery - 01-01-2014 07:31 AM
Oh I'm so sorry about being on the wrong site. With all my research I found I could relate best with the treatments and surgeries that were discussed in the different forums on the OCF . Wen I read about treatments for soft tissue cancer of the mandible they suggested the chemo I figured I should get a second opinion . Again I apologize, I never intended to overstep any lines. I will look up sarcoma sites. Happy New Year and best wishes.
Posted By: PaulB Re: status post surgery - 01-01-2014 12:56 PM
You're not on the wrong site or saying to leave. I'm just offering suggestions that may or may not be beneficial. I briefly looked into osteosarcoma, for a blogger friend in Austrailia looking for help, and found some support groups, books, info, treatments, relative to his disease. Some things seem the same between the two like some chemo's used, not all. if radiated by IMRT in the head and neck, Brachtherpy, IORT, surgery, side effects, stress of course, but some other treatments were not the same, but my friends went to the lung, and I wasn't sure on your type of your sarcoma, not that it matters to me cause I know nothing to really help, and joining another site, in addition to here, researching, may help you. I belong to three different suport groups myself. Your input may help others here. One side effect from radiation treatment, which most had here, I believe, unfortionatly, can be sarcoma in soft tissue in the radiated area years, decades later.

If I come across any info, I can link here. Happy New Year.

Here is a link to the NCCN Guidlines for Soft Tissue Sarcoma for professionals, which most CCC may follow, and will take you step by step in the type of tretmnts based on sub type, area, stage, etc. You may have to register to view or may be able to google a copy available on-line:

Sarcoma Alliance

Italian Sarcoma Group

Peter Mac Sarcoma Service:

Australian Sarcoma Study Group: http//

Books: "Diagnosis and Management of Soft Tissue Sarcoma" by Murray F Brennan and Jonathan J. Lewis, who are from MSKCC. I have this on e-book.

"Pediatric and Adolescent Osteosarcoma" Published by Springer. They may have treatment ideas, information, resources, and I this on e-book too.

Posted By: ChristineB Re: status post surgery - 01-01-2014 03:11 PM
Sandy, the is The Oral Cancer Foundation. It is not only for SCC type oral cancer but that is the most common one we see. Its for all oral cancer patients and caregivers. You could find other sites helpful or you may not. You are always welcome here and we will always try to help as much as we can.

Posted By: sandy1923 Re: status post surgery - 01-08-2014 05:04 AM
Tomorrow is my day for a 2nd opinion on chemo. Tomorrow is my day for dental clearance so the radiation can begin..should I be concerned that 2 1/2 months have passed between surgery and radiation?
Posted By: Cheryld Re: status post surgery - 01-08-2014 04:36 PM
yes - sorry but it's the truth. Surgery is meant to remove the tissue. Even if there are clear margins there is always the potential for something to be left there. This why they generally give 6 weeks for healing - unless you have complications - then they like to keep it in that time frame.

I am surprised you've waited that long. It is a complicated surgery no doubt but most of the major healing takes place in the first 6 weeks. They know how long it takes for bones/tissue/muscle to heal.

Anything beyond that time there is the potential that anything left there can grow back, expand, and move. (this often depends on the type of cancer and aggressiveness of it) I am not overly familiar with sarcomas. But my question to the drs. while I was battling my tongue tumor was - how soon can you do it?

Why so long a wait?

best of luck.

Posted By: sandy1923 Re: status post surgery - 01-09-2014 02:37 AM
Still no clearance back to the dentist in 1 weekfor treatment. Hurry up and wait. Finding out patience is Not part of me. Getting frustrated fast. Back to the oncologist in a week. He wants to talk to the ENT. Something tells me this conversation should have already taken place. Aghhhhhhh.
Posted By: Cheryld Re: status post surgery - 01-09-2014 04:30 PM
Yes hon you need to push - start phoning - get your face in front of theirs - not rudely - explain - you're scared you don't want this to come back you've been waiting and you're very anxious. Sadly where medicine is concerned it's the squeaky wheel that gets noticed otherwise you just blend into the group.
Posted By: sandy1923 Re: status post surgery - 01-30-2014 08:31 AM

Radiation has finally started I'm 11 treaments in and have noticed a tightness in my neck and face, I'm assuming this is normal. Throat is sore, face is red and feels hot. Stopped having fun 3 months ago when this all started....trying really hard to stay positive
Posted By: donfoo Re: status post surgery - 01-30-2014 09:28 AM
Hi Sandy,

You are doing great, hang in there. You been here long enough to get read up so you know what to expect. Just drink and eat as much as you can for as long as you can. Most start having real issues by week three. good luck, don
Posted By: ChristineB Re: status post surgery - 01-30-2014 02:20 PM
Sandy, now is when the side effects usually begin to appear. They will progressively get worse as time goes on, even continuing the first few weeks after finishing treatment.

What you can do is to focus on your intake. That is what will make this easier. Every single day you need a minimum of 2500-3000 calories and 48-80 oz of water. Every single day! No skimping!!!! That quickly becomes a bad habit and before you know it you will become malnourished and dehydrated. You do NOT want to end up hospitalized for that. I went thru it a couple times and it was horrible!!! So please push yourself to always take in enough every single day.

Rinse your mouth at least 4 times a day with a mixture of 16oz of warm water with 2 tsp baking soda and 2 tsp salt. the salt will probably burn but try to keep it in there by cutting back to 1 tsp or even 1/2 a tsp. Salt water helps with healing those mouth sores. The baking soda helps neutralize your ph balance in your mouth.

Hang in there, we are here to lean on if you need us.
Posted By: Cheryld Re: status post surgery - 01-30-2014 06:09 PM
Hi there... tightness is normal!!! redness - you need a good cream for after daily rads. Just don't apply it prior to. It's a one foot in front of the other prospect. You will get there. hugs
Posted By: ChristineB Re: status post surgery - 01-30-2014 10:19 PM
Ask your doc for prescription cream like beta-val for your neck. Pat it on several times per day but never within 3 hours prior to rads. It can cause issues with your treatment.

Hang in there!
Posted By: sandy1923 Re: status post surgery - 02-08-2014 05:56 AM
14 rads down and having trouble swallowing. Using baking soda/salt mixture several times a day. Dr prescribed triple mix (benedryl, maalox and xylocaine is not working. Does anyone have any other suggestions? PLEASE! Willing to try anything.
Posted By: donfoo Re: status post surgery - 02-08-2014 06:20 AM
Ask RO to prescribe pain meds. Hyrdocodone, oxycodone, and morphine are the typical pain killers. If you are hurting take them, there is good reason to suffer and pain delays recoverying.

Posted By: ChristineB Re: status post surgery - 02-08-2014 12:24 PM
So sorry to hear you are beginning to feel the effects of rads, Sandy! Unfortunately there isnt very much that can be done. Try a humidifier in your bedroom at night to increase moisture in the air. Drink extra water and keep swallowing. Even when it hurts you must still force yourself to fight this and continue to swallow even sips of water several times per day. If you dont keep using those swallowing muscles, it will be so much more difficult down the road trying to reteach them how to work correctly to avoid aspiration. I know its not easy, but please keep pushing yourself.

The triple mix is to help numb your sore throat/mouth long enough to eat and drink. Its called Magic Mouthwash. This only will work for a few minutes, maybe 15 or 20 minutes max. One trick I learned was to gargle with it for as long as I possibly could then it will last longer before wearing off.

Hang in there!!! We are in your corner smile
Posted By: Cheryld Re: status post surgery - 02-11-2014 05:15 PM
Try drinking flattened club soda... it is the same as the baking soda mixture but you can drink it and don't have to spit it out. This way it helps heal your throat.

I'm going to play my manuka card here. I don't often trot it out these days but - I will suggest it as it can't hurt, (okay I meant that metaphorically) but it may help. I used it througout my treatment and while things did get bad, it actually staved off the worst until the last two days of treatment.

If you want to try it - you can buy it at health food stores, and or whole foods. If you live in a one horse town that doesn't have a store like that - you can order it on the internet.

You want organic, you want a fairly high UMF - +16 is good.
Take a teaspoon, put it in your mouth let it melt.
Swish for 1-2 minutes (okay so yes IT STINGS - BUT it heals and after you swallow it, it numbs you) I used to hop around while I was swishing. And it helped me. Not everyone agrees, but it might be worth a try. Look it up.. see what it's all about. It's fairly cheap - $20 - and ask your RO before using it. Mine said more power to you, but some - because they have no idea what it is may say no.

You can do this frequently. I would eat, rinse then use the honey. Or after treatment I would rinse then use the honey.

It doesn't cause cavities because it is antibacterial, and it even helped with my thrush. HUGS.
Posted By: donfoo Re: status post surgery - 02-13-2014 04:36 AM
I think water with baking soda may result in a higher pH which tends to offer higher buffering over club soda and feeling a bit "smoother and softer".
Posted By: Cheryld Re: status post surgery - 02-13-2014 03:06 PM
This is possibly true. The hospital actually recommended the club soda. I used a mixture of both as the club soda gets into the throat area, where the mixture doesn't as you shouldn't swallow it.

Posted By: sandy1923 Re: status post surgery - 02-17-2014 05:41 AM
Radiation sucks! Any suggestions on taste buds are gone everything tastes rotten, using my feeding tube almost for everything. Even water tastes salty. I know I have to intake something orally but any suggestions on something that won't make me gag. Still have 20 rads to go. Chemo is now a possibility. Taking life 1 day at a time.
Posted By: n74tg Re: status post surgery - 02-17-2014 11:27 AM
Hi Sandy - Everything tasting bad is in my opinion way worse than having zero taste. Neutral I can handle, taste bad and I didn't want to eat anything. I could easily go the whole day with no food as there was no appetite either. But, we know we gotta eat. I didn't have a feeding tube, a big difference for me, I had to intake everything by mouth.

One thing I could always get down was Ensure Plus, even the Walmart version of it was okay, it didn't taste bad. It was smooth, it was creamy and I knew it had the nutrition I needed.

Though it was suggested to me by others I didn't use the triple mix, I just used oral lidocaine. My RO wasn't a fan of the triple mix; he liked oral lidocaine and consumable aloe vera juice ($7 a gallon at Walmart). And if those weren't enough he would give prescriptions for the stronger pain meds though I never needed them. He said on several occasions that the medical trials results of aloe vera are well documented and therefore it is a valuable tool in fighting inflammation. It tastes neutral even when the taste buds work.

My throat seldom hurt, for me it was the mouth that hurt. So, I just diluted it 2 parts lidocaine to 1 part water, a little thinner, easier to swish, gargle and spit. I didn't swallow it even though the doc said I could. When symptoms were the worst I used lidocaine every hour, or so it seems, and always before a meal (and a couple of times also during the meal). It seems eating just washed it away and eating without it was too painful. Since I always spit it out I felt I was never overdosed. It didn't take much, a teaspoon size dose or less was always sufficient. My prescription was always for 300 ml sized bottles and I went through two of them during my rads.

I'm sorry your symptoms are so bad this early in treatment. It won't help you feel any better, but if memory serves my RO said you symptoms are about average. It will be uncomfortable, but you will get through it, one day or even one hour at a time if need be. Soon enough this will be just a faint memory. I'm seven weeks post treatment right now and I had to think some to be able to write this response to your thread.

take care, keep fighting, just around the next turn you will start to see a small light at the end of the tunnel.

Posted By: Hockeydad Re: status post surgery - 02-17-2014 11:50 AM
The under statement of the year, "Radiation sucks". No question about it. Calorie intake is the biggest challenge. Just focus on getting thru the next feeding. Keep drinking orally everyday. Even if it is just a few sips. Watch out for burning tongue, for me thrush followed, with all its nasty effects. I think it might be worth preemtive actions, if there are any. Aasks the doc to look every time you see one. It sucks but its just pain. You will get thru it. Good luck.
Posted By: sandy1923 Re: status post surgery - 02-22-2014 06:44 AM
More then halfway done...yeah! Unfortunately vomiting started early this morning. Everytime I put water/ensure inmy feeding tube up it came. I so hate to vomit. Ended my day at urgent care for 3 bags of fluids. Fingers crossed for a better tomorrow. Argh...losing my patience with cancer.
Posted By: ChristineB Re: status post surgery - 02-22-2014 12:38 PM
Sandy, good job at being aware of the importance of yoru fluid intake. Everything you lose must be replaced, thats not even counting your daily minimum intake you need. This can turn into ALOT of fluids.

You should have anti-nausea meds. Take them around the clock, not missing a dose. Once you get behind the nausea, it seems like its impossible to get ahead of it. If worse comes to worse... there are even suppository anti-nausea meds for those severe cases where its not an option to take meds orally.

Best wishes!!!
Posted By: sandy1923 Re: status post surgery - 03-06-2014 08:33 AM
7 more treatments. Neck and face hurting. Throat sore. So thankful only 7 more.
Posted By: sandy1923 Re: status post surgery - 03-08-2014 06:25 AM
I can barely hold back the excitement 5 more rads to go. Struggling with consumption. Ensure is over rated. Thankful I have a tube! Still waiting for a 2nd opinion on chemo. I miss being me, feeling down and depressed.
Posted By: sandy1923 Re: status post surgery - 03-14-2014 04:16 AM
Finished my radiation today! Finally going for chemo consult. Hoping I'm almost done. Any advise on handling chemo would be appreciated. Staying positive!
Posted By: Cheryld Re: status post surgery - 03-14-2014 02:59 PM
So glad you're done !!!!! A big YAY to you my dear!! I found chemo not to be very bothersome compared to rads - I think that very much depends on the chemo though. I am wondering why they are giving it to you post treatment as opposed to with rads?!
If it's cisplatin that's a 50/50 prospect in terms of feeling crappy. Personally I had mild nausea that's it, and my meds kept it in check. It also helped that they kept me in overnight and pumped me with fluids... Not something all hospitals do but they did. So overall It was fine - while a friend of mine was totally sick throughout. So it really depends. You need to find out what they are giving you. As far as I know cisplatin and other oral cancer chemos (carbo) work only with rads. They may give you taxol, 5fu... Knowing that will give you a better idea of what to expect. Hugs and congrats now be patient and heal!!
Posted By: sandy1923 Re: status post surgery - 03-15-2014 09:14 PM
Cheryl- unfortunetly I don't know what kind of chemo. The hospital ( loma linda university)where I had my surgery called me, after reviewing my case, and said they have several chemo options for sarcoma. ( I know I'm technically in the wrong forum, I just relate better). My appt is on the 28th. My local oncologist said there was no treatment. I disagreed and went back to my surgeon. I'm just frustrated because I feel like everything has been drawn out. I want to focus on recovery but then I start the next phase. Ugh! So over it all. Trying to be patient trying to heal.
Posted By: Cheryld Re: status post surgery - 03-17-2014 03:34 PM
That's okay you are welcome here. The sarcoma might be why they are offering you chemo separately. My hospital has it's own sarcoma clinic - though I am not overly familiar with it. I guess you'll have to wait and see what they are offering and your local oncologist is why we always push for second opinions - what is untreatable to one person is a do for another.

I related a story here a while back - I'll share again.

Ten years ago a guy in Eastern canada was diagnosed with an inoperable liver cancer.

It was deemed inoperable because of location. Wrapped around some important necessary for life liver parts.

He sought treatment locally - they did what they could. His tumor didn't respond. They essentially said sionara.

He sought a 6 month treatment offered in western canada. His cancer had no response.

They said go home.

His wife took him to a naturopath they put him on a healthy alkaline diet. (orgainics - green veggies etc..) he kept hanging in there. At some point over the ten years he moved to toronto with his family. He went for a check up here with a new dr. The dr. told him he though a dr. in toronto might be able to do something for him - he followed up and the dr. said he couldn't what he had was inoperable, but referred him to a new dr. who was doing an experimental surgery for his kind of cancer. (they treated the surgery like a liver transplant - dropped the body temperature, put a proper blood flow in place, and removed the entire liver - then did an intricate surgery to remove the tumor.

Two years later - he is cancer free and said he now can look at a potential future - where before he was just hoping to make it week to week.

sometimes it's all about buying time, or meeting the right person. Not every dr. has the same skill set.

hugs and feel better.
Posted By: sandy1923 Re: status post surgery - 03-18-2014 06:36 AM
Thanks Cheryl and what a great story. I applaud every member on this forum. This forum has truly gotten me through some of my darker times. Today was a hard day the pain/burning in my mouth sucks. However I am so happy to be done with radiation. That mask ( to me) sucks more then the pain.
Posted By: Cheryld Re: status post surgery - 03-18-2014 04:02 PM
Yes... The mask sucks in a big way. I am glad you're done. It takes a while to heal. I tried to sleep my way through the two weeks following treatment. Which I pretty much did. For the worst of it I used an Oxy to put me to sleep for about 7 days in total Two at night one in the afternoon before lunch. I drank fully by mouth through treatment so I just talked myself into chugging my ensure four or five times a day, and then rinsed and made sure I kept the area clean.

hugs to you on getting through it. take care
Posted By: sandy1923 Re: status post surgery - 03-30-2014 07:14 AM
Got my 2nd opinion. Cisplatin/Doxorubicin 6 treatments. Follow up ct scans oncologist concerned about possible mets to chest. Previous scan suspect..... not sure how I feel. Thought I was almost done.
Posted By: sandy1923 Re: status post surgery - 04-11-2014 02:54 AM
My hmo denied my chemo treatment even though 2 cancer centers agree I should. Very annoyed with the system but I will win.
Posted By: ChristineB Re: status post surgery - 04-11-2014 03:09 AM
Appeal the denial. Your doc should help you by sending a letter of necessity to your insurance company.

Dont give up. Keep fighting.

Good luck!!!
Posted By: Cheryld Re: status post surgery - 04-11-2014 02:14 PM
Freak out!! Move to canada... Fight!!
Posted By: sandy1923 Re: status post surgery - 04-16-2014 08:18 AM
Having my 3rd opinion on Friday ( the tie breaker) today I had 4 ct scans and a bone scan....(my pre-ops for chemo) my hmo will pay for those but not chemo.....go figure! Completely frustrated.
Posted By: Cheryld Re: status post surgery - 04-16-2014 03:31 PM
Bomb threat?
Posted By: sandy1923 Re: status post surgery - 04-16-2014 06:04 PM
Lol crossed my mind along with several other thoughts.
Posted By: sandy1923 Re: status post surgery - 04-22-2014 07:21 AM
Chemo won. 6 cycles here I come....
Posted By: Cheryld Re: status post surgery - 04-22-2014 02:01 PM
WOOOOT... well okay.. YAY?

I guess this is where the "be careful what you ask for" saying comes into play.

Sorry not trying to be facetious. I am very glad you got the insurance company to concede. Chemo runs the gamut, to no more bothersome than a fly, to head in bucket sick for the entire time. For me it didn't really bother me at all other than mild nausea. Most people sit somewhere in the middle of the two extremes. But the one plus is that it makes the rads more effective so it's worth whatever you have to go through.


Posted By: sandy1923 Re: status post surgery - 05-03-2014 06:21 AM
My chemo delayed for a week. Infection in my chin. 3rd infection in as many months. What am I doing wrong?
Posted By: Cheryld Re: status post surgery - 05-06-2014 07:01 PM
I had my chemo delayed as well - I was on three big bags though. It's normal to have issues. At this point you are already immunocompromised, chemo will make this worse and leave you open to infection. you had a pretty big surgery not too long ago so your body is likely still trying to heal and recoup still and now you are tossing another arsenal of meds and poisons at it.

hugs and stay strong.
Posted By: sandy1923 Re: status post surgery - 05-15-2014 06:32 AM
First chemo treatment was on 5/9. I'm barely coming out of the darkness. My treatment is every 3 weeks for 6 cycles. Cisplatin and adriamycn. Chemo sucks awhole new list of crap. Not sure how to handle the chemo.
Posted By: Cheryld Re: status post surgery - 05-15-2014 02:58 PM
As far as I know from chemo (my friend Lucy had peritoneal cancer - her treatment was cisplatin and taxol, then a few others - she had three different rounds and ended up on a clinical trial)
Anyway they all have bad side effects. However, your body does eventually adapt to them. So normally, you are nauseated and usually week two you are at your weakest, then you begin to feel better then they bop you on the head again.

Many blessings to you.. and strength.
Posted By: sandy1923 Re: status post surgery - 05-23-2014 04:26 AM
Another infection.......argh. beyond frustrated. Just started to eat after chemo (5/9) not sure if I can handle 5 more. Sitting on the "pity" pot right now sorry for that.....I find myself so easily frustrated.....Do the chemo's get easier?
Posted By: sandy1923 Re: status post surgery - 05-23-2014 04:31 AM
Another infection.......argh. beyond frustrated. Just started to eat after chemo (5/9) not sure if I can handle 5 more. Sitting on the "pity" pot right now sorry for that.....I find myself so easily frustrated.....Do the chemo's get easier?
Posted By: Alpaca Re: status post surgery - 05-23-2014 07:49 AM
It's a long time since I had chemo but I can imagine how you feel. You should feel better in the third week and after a few cycles you learn how to deal better with the side effects.

Sending you all my empathy.

Posted By: Cheryld Re: status post surgery - 05-24-2014 03:44 PM
Truthfully it think it depends on the chemo. From what I know of chemo - not through my own experience with it - but through helping my friend through it - you eventually build up a tolerance for it - so as the months pass it gets less difficult. You may still have some nausea but the human body is really a magnificent machine that adapts so slowly you will find that the chemos don't knock you as flat after each treatment. I am not sure if this is a good thing or bad as ideally if it impacts you greatly - chances are it's kicking the crap out of the cancer too. This is why a tolerance is not necessarily a good thing. Hugs my dear. Be kind to yourself and practice the art of self soothing. smile
Posted By: sandy1923 Re: status post surgery - 05-27-2014 12:46 AM
Been in the hospital since Friday. Infection/ dehydration! Promised myself never to make dehydration mistake any cost! Now I'm playing the waiting for the dr's to get back to you game. Feeling better
Posted By: ChristineB Re: status post surgery - 05-27-2014 02:08 AM
Im so sorry to hear you have been hospitalized Sandy! Ive been down that road and you feel just terrible. I hope you begin to feel better very soon.

If you are having problems taking in enough water, you can always ask your doc for a prescription to get hydrated at your hospital's out patient chemo lab. Its a good plan to keep this in the back of your mind so you dont get dehydrated again.

Best wishes for a quick recovery, feel better!!!
Posted By: Gma7 Re: status post surgery - 06-13-2014 12:54 AM
Sandy, you are the only other person that I have read that has had two mandibularectomies, as I have had also. Mine were 11 months apart. It's pretty unusual and I have had a hard time finding answers since this is different. I had Sequemous Cell Carcinoma, which all started with leukaplakia. I hope you are doing better and feel free to write to me any time.
Posted By: sandy1923 Re: status post surgery - 06-30-2014 04:47 AM
In the hospital again even with outpatient hydradtion. I truly hate this. 3 chemos down dr considering no more how can this be right? Shouldn't I complete all 6? How can I handle all 6?
Posted By: ChristineB Re: status post surgery - 06-30-2014 11:46 AM
Hang in there, Sandy! I have faith you will get thru whatever is thrown at you.
Posted By: davidcpa Re: status post surgery - 06-30-2014 12:39 PM
You'll find the way.
Posted By: sandy1923 Re: status post surgery - 07-23-2014 05:44 AM
Had seizures over the 4th of july chemo delayed possibly cancelled not sure what to do. Not handling this chemo business very well.
Posted By: sandy1923 Re: status post surgery - 12-17-2015 05:38 AM
Time for me to freak out again....2nd fibula free flap scheduled for 1/4/2016. Trying to tell these doctors I'm running out of spare bones. My flap and bone have been compromised due to radiation. Trying to keep a clear head and my sense of humor.
Posted By: sandy1923 Re: status post surgery - 02-06-2016 02:20 AM
Had my 2nd mandiblectomy on jan 4.they put in a peg but I'm really sruggling with intake and pain. I really thought the 2nd time would be easier, boy was I wrong.
Posted By: ChristineB Re: status post surgery - 02-06-2016 02:22 AM
Im so sorry you are having a hard time. Make sure you relay this to your doc to help get the pain under control.

Best wishes with your continued recovery.
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