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GAgirl Offline OP
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My husband was diagnosed the first of April with Oral cancer. He has a node on the right side of his neck and on his right base of his tongue. His TNM rating is T2, N1, M0 and he tested HPV positive. His cancer is considered stage 1 since he is HPV positive. We were told that HPV positive was a good thing and normally reacts well to treatment. His treatment plan called for 6 weeks of Chemo(Taxol) and 7 weeks radiation. They put him on Taxol because my husband has kidney issues and the oncologist said that Taxol would do less damage to kidneys. He started treatment on April 21. He was doing good until after his 2nd week of treatment. He started getting really painful mouth sores. I found this website and saw where Miracle mouthwash helped a lot of people. My husband asked the radiologist about it and they prescribed him some. He started using that on May 4th and he was also doing the water and baking soda rinse. I also got him some Manuka honey(found that on this website also). I also started him on a soft diet (soups and such). He wasn't real diligent about doing the mouthwash, rinse or honey 3 times a day but he did do them some. By Thurs May 7th the sores got so bad that he couldn't eat any food was having trouble getting down liquids. We went in to see the radiologist on Friday, May 8th and told him what was going on. He asked if he was taking the miracle mouthwash and Gary said that he was rinsing his mouth with it for 1 -2 minutes and then spitting it out. The doctor said asked why he was spitting it out and said that he had told him to swallow it. The thing is there were no instructions on the bottle of miracle mouthwash of how to use it, it just told the amount to take. During the visit he never looked in his mouth. He went and got fluids that day since he was dehydrated. He felt better after the fluids but he still wasn't able to get any food down and very little liquids. On Sunday May 9th we went to ER, they gave him fluids but his blood pressure was really low and his heart rate was out of whack(he has AFIB) so they put him in ICU until they got his heart rate under control. The speech therapist has worked with him on his swallowing and they have been giving him miracle mouthwash and he is able to get down some foods. He is getting a feeding tube tomorrow(May 15th) and should be coming home tomorrow afternoon or Saturday.

The radiologist is now saying that my husband has had a serious reaction to the chemo and that is why the sores were so bad. The new plan is to stop the chemo and continue with the radiation treatments. They have also upped the dosage of the pain meds. They want him to come in on Monday to start the treatments back up. His last radiation was on May 6th and last chemo was May 5th. The good news is the node on his neck has gone down 70 - 80%!

We know he needs to get back into treatment but we haven't been that happy with the radiologist so we were considering getting a second opinion. In hindsight we realize we should have gotten a second opinion before starting treatment but both felt rushed and pressured into signing the papers and starting treatment right away.

We were thinking about getting s Cancer Treatment Centers of America here in Newnan, GA. Has anyone used them and if so, what is your opinion of them?/

Should we tell our current doctor that we are getting a second opinion? Has anyone else switched doctors in the middle of treatment?

My husband is on Medicare. Does anyone know if Medicare has an issue with switching during treatment?

Has anyone stopped treatment in the middle and then started back up again after a few weeks? Are there downsides with doing this?

Is there a way to find out who are the best rated radiologists for oral cancer in my area?

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Welcome to OCF! Im so sorry to read about your husbands situation!!! Hes been thru alot, but dont forget... you have too! Caregivers work hard!!! They need a break once in a while to take care of themselves and catch their breath from carrying around the weight of the world. I apologize in advance for my rambling and giving too much info. I truly wish both you and your husband all the best hope what Ive written is not overwhelming to you!!!

So many things are going on with your husband, I dont know where to start first. I guess I'll begin by tackling the first thing thats going on.... feeding tube placed today then released later today? NOOOO!!!! If your husband is having a PEG (the kind of feeding tube with a small balloon that gets inflated directly into the patients stomach) feeding tube surgically placed with the kind of shape he is currently in a discharge today would NOT be a good idea!!! This is the time caregivers must do whatever it takes to advocate for their patient so they receive the best care possible. I highly recommend your husband stays put for at the very least another day. I do understand with the Corona pandemic happening many facilities are stretched to their limits but for your husbands safety and comfort he should be kept for the very least observation. Many will not feel too bad after having their feeding tube placed, thats probably due to the surgeon giving them extra meds to last for hours after the surgery. Once those meds wear off, be prepared for your husband to be in a considerable amount of pain. Most feeding tube users will agree ... the first couple days of having their tube placed were very painful, sitting up, coughing, sneezing, breathing or even just getting up or sitting down was difficult and painful. I felt like I had been hit by a convoy of trucks, I stayed about a day and a half after just getting the tube. I could have stayed longer but wanted to be back home so without thinking it thru I got released and struggled considerably. To make matters even worse, I still didnt even know how to use the tube! Being in the hospital and going thru the discharge paperwork then to have a visiting nurse and the medical equipment company sending their delivery plus the drivers paperwork too... hearing everything about the feeding tube operation isnt always given the attention it needs. So until your husband is back on his feet well enough to pay attention and ask questions about the tube getting discharged its a good idea cuz theres nobody right there you can call for help if something is wrong which can too easily happen on such a hectic day with overwhelming piles of paperwork

Just remember your husband will need to have the feeding tube supplies delivered from a medical supply company in your area and a nurse should come out with a bunch of paperwork and accessories to teach you both how to use the tube. For me, Im about 12 years with a feeding tube so I have learned all the ins and outs about how they work and what to do if I run into trouble. If you have questions about that sort of thing please just ask and Im happy to help as much as I can. Just make certain your husband is alright to handle at least a 2 hour set up/teaching session at your house before he gets discharged. You both need to learn it, take notes and whatever brochures they offer take them as they could come in very handy later. Also ask the feeding tube doc which doctor will be monitoring your husbands feeding tube supplies for the monthly refills, will this get coordinated before your husband is discharged?, ask them to write a prescription to temporarily use the feeding pump (usually its the Joey Kangaroo pump) so the tube can get do its job even while your husband is resting or sleeping. Always make sure his head is elevated and he is sitting/laying with the upper part of his body higher then his stomach. Ask the doc to write the order to have a visiting nurse or the medical supply nurse do home visits to ensure everything is ok with both your husband and the procedures of using the pump/feeding tube. While the doc is writing ask to get prescriptions to get extra hydration to ensure your husband does not get dehydrated again. Im sure the poor guy must have felt absolutely horrible!!!

Most OC patients going thru rads (usually more-so with patients getting chemo along with their rads) will lose weight and begin struggling as they start having the side effects of OC treatments. Im happy to hear your husband has magic mouthwash (MM) which could be known as miracle mouthwash or any number of different things Ive heard it called over the years and has begun to eat better when using it. A word of caution about swallowing the MM.... BE CAREFUL!!!! Using MM to numb the area before attempting to eat could have serious consequences as when its swallowed it will also numb the automatic gag reflex everyone has when swallowing something and it goes down the "wrong pipe". Your husband could without realizing it have fluids and food going into his lungs which eventually could cause pneumonia or some other potentially life threatening situation. Definitely talk to other medical professionals like a speech therapist, dietician, ENT that specializes in OC patients, etc about this before continuing to swallow the MM!!! Your husband may need a barium swallow test to ensure he is actually swallowing correctly when swallowing the MM before eating... but I dont think this is done in the middle of treatments. You can even ask a pharmacist as MM has several different ingredient choices. The one I used was lidocain, maalox and benedryl... others frequently say they have nystatin or something else to work on thrush (VERY common in OC patients!!!). If your husband has not been using the 1 cup warm water, 1 tsp baking soda and 1 tsp salt to swish around in his mouth at least 4x a day then spit it out, he should!!! If possible due to his mouth sores (which normally appear after the 2nd week of rads) the salt may burn like crazy so then cut it to half a tsp or if that still is too much then a 1/4 tsp just to keep some salt in the mix. This will do wonders on helping to heal mouth sores, but when going thru rads makes this very hard to do! The baking soda/salt mix helps to keep the PH levels in the mouth stable and when used with a water pik on its lowest setting, it will help him to keep his mouth as clean as possible for someone with mouth sores which is NOT an easy task.

I am very concerned you and your husband are considering switching to another treatment facility after 3 weeks of rads!!! Every single day that is missed while your husband is hospitalized must get made up. Skipping days is NOT recommended as it interrupts everything else thats going on. Being in the hospital he still should be going for rads, Im very surprised they aren t transporting your husband to get his rad treatment. I ended up hospitalized a few times for malnutrition and dehydration and know all too well how important it is to continue those treatments or whats been done already will likely be for nothing. Its doubtful the cancer has been eliminated already and taking a break in treatments only allows the cancer to continue advancing. I have no info about what insurances do what in different areas of the US... every state is different and in PA where I live, even the counties are all different so much so it seems like Ive crossed into another state just by moving to a different county. I would HIGHLY advise you and your husband to avoid all treatment facilities that are "for profit" organizations. Those types of places are NOT the place for someone with a complicated health situation going on... they pick and choose which patients they will take and turn away anyone they feel they can not cure to keep their survival percentages high which attracts even more uninformed patients seeking to eliminate their cancer. OCF does not recommend any one doctor over another as we do not have the skills to properly and thoroughly vet physicians and keep up with the thousands of medical professionals in the US constantly changing updates. PLEASE be very VERY careful if changing doctors!!!! There are a great many websites where they screen doctors but each one has their own criteria which may or may not be relevant or current... plus without knowing exactly what the doctors/facilities are being rated for the info probably isnt as accurate as its made to appear. If you call your medical insurance company (Medicare?) they can provide you with a list of doctors and treatment facilities. At OCF, where a patient decides to get treated is up to them. Every patient (no matter what their condition is) should seek out the very best medical care they can and go with it. Just remember, bedside manner does NOT make a doctor successful or talented. Ive had some brilliant specialists who were so focused on the disease and eliminating it they could barely hold a small talk conversation or look me right in the eye when talking to me, yet they were the best in their field for 100 miles. See, you just never know! Asking friends and relative or anyone who has survived a life threatening illness like cancer and they will always say their treatment doctor was the best one they've ever seen and they recommend them. Unfortunately... no 2 people are ever alike enough to be considered an equal comparison to another patient so the person who says their doc is tops really does not help at all as its just their biased opinion thats NOT based on any specific medical criteria or rating system. Everybody's different and will always respond to medications, treatments, procedures, etc in their own unique way. I cant imagine switching treatment centers right in the middle of rads so PLEASE do your due diligence and investigate any person or center you may be considering before making any decisions. I suggest speaking openly and honestly with several medical professionals about the ramifications of making the major change you and your husband are talking about as it could become a life threatening situation due to the lapse of time not receiving treatments. As for the best cancer treatment centers, the top places in the US currently are Comprehensive Cancer Centers which is one of the links Ive included below. Dont let distance choose your husbands fate by not considering the top facilities as theres a great many who have and found help with transportation on free flights, free lodging/food, and even transportation back and forth to the CCC. There definitely are other options out there! But no being a medical professional myself, I do not know just how much the treatment lapse and what other serious conditions would be affected with your husbands making that kind of major change. USE EXTREME CAUTION!!!! Sorry if Im rambling on about this... it really is vitally important!!! Ive been here 99% of every single day of the past 13 years, reading every single post, interacted with thousands thru this forum, private emails and phone calls from OC patients/caregivers all over the world plus a tremendous amount of other CORRECT and UP TO DATE medical info plus what Ive been thru myself I do have some insight as to the impact of switching in the middle of treatments. Thinking back I can only remember seeing it done one time. Unfortunately the person refused to listen to their doc and chose to stop treatments before allowing any damage to their vocal cords making it impossible to sing. I dont understand why some will make the decisions they do but "everybodys different" phrase certainly fits this type of situation. I was very sad to learn of their passing when it did not have to end like that but to them singing was their life and they made their decision which they felt was right for them.

Below you will find the OCF main site's Understanding section which has hours and hours of reading and if its from OCF, you can rest assured it is correct medical info. Plus the list of CCCs which are the best of the best in the US. I also added a link for the best hospitals in case you would be staying in your own area. Choosing a doctor or treatment facility is NOT an easy decision and shouldnt be taken lightly. I know theres a recent post by tlc in our General section about a CCC doing 2nd opinions over the internet where no traveling just send all records to them and they'll return their advice which might be an easier option (link is below).

Feel free to post and ask questions. We will do our best to help. Just remember we are not medical professionals, we dont have medical degrees or licenses but we can speak of our own experiences. If an OCF member is weighing in about the best place or best doctor then its pretty much going to be everyone recommending their own or their patients doctor as being "the best". Thats an opinion and is NOT scientifically proven. Unfortunately no member here has the proper credentials or background to accurately assess any medical professional. To avoid anything that could be twisted into sounding like its a disparaging comment about rating someone with a medical degree, its best to not give an opinion at all. One idea I had was to look at the links of emdical facilities and check to see how a place you may be considering stacks up... that is as long as you are on a reputable site like what Ive given you links to below.

Best wishes with everything!!!



Main OCF Site, Understanding

NCI list of CCCs

US News Best Hospitals List

OCF post about online second opinion by a top US facility








Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2020
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GAgirl Offline OP
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Christine,

Thanks so much for your reply. My husband did come home late on Friday. Someone came by on Saturday and showed us how to use the feeding tube. Since he has been off the rads for over a week he is able to eat foods by mouth so he hasn't needed to use the feeding tube but it is there when he does start back with treatment. We are planning to transfer to a doctor at Emory which is part of CCC network. I would like for him to get started as soon as possible but my husband wants to wait to start back.

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If you are considering transferring to another treatment centre, you really should talk to your oncologists first. Here’s an old post from Paul B about a break in radiation

https://oralcancersupport.org/forums/ubbthreads.php/ubb/showflat/Number/163270/Searchpage/1/Main/14841/Words/%2BRepopulate/Search/true/re-how-serious-is-a-break-in-radiation-treatment#Post163270

Apparently the cancer may repopulate and all your previous effort will be wasted.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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