the feeding tube was the worst part of my husband's treatment process. they finally replaced it half way through and then after it was removed, they had to do surgery to suture the hole as it would not heal. He put up with the issues way too long.

Feeding tubes can and will need to be replaced for all sorts of reasons. Leaking that much is NOT normal! The drain sponge should be changed at least once a day, more if theres a problem like granulation of leaking. Patients that leave a wet drain sponge in place can end up with an infection. Granulation can hurt like heck!!! Call the gastro doc who did the original placement and ask for an office visit/consult wi9th them. Your husband could need to have the current tube exchanged for a new one. Unfortunately, feeding tubes dont always have the best support after they're placed. Patients who have a feeding tube should NOT be lifting anything heavy, under 290 pounds is fine but nothing over! I have silver sulfadine cream that I use around the tube site covered with a double drain sponge to help avoid granulation. If your husband doesnt already have this ask the doc for a prescription. It only takes a very little amount (so you can see thru the thin to be effective. Use a qtip to spread a thin coating of cream around the site,

Best wishes!!!

Enjoy your Tuesday.

Thank you for posting this. I'm going to have 6 weeks of radiotherapy with chemo thrown in at the same time. This will be after my surgery.
I was wondering how the 6 weeks will work as all I know is that rad will be 30 sessions, 5 per week. I couldn't see where the chemo was going. (I've got my meeting tomorrow)

Anyway, thank you for posting something positive in such a dark time. I look forward to finding my happy day in the week

Hi,

I’m 35, female. I’m guilty of using google to diagnose symptoms but I’m also petrified at this point because I can’t find another reason for what I’m experiencing. I’m also having some “odd” symptoms that I cannot find any explanation for and was wondering if anyone with a diagnosis has ever experienced them.

In March I noticed some bumps on my tongue, went to ENT who scoped me, said he saw “pustules” on my tonsil and applied some pressure which causes some funky tasting stuff to be released into my throat. He prescribed antibiotics. I wasn’t experiencing any pain in the throat. I didn’t take them. Dentist did oral cancer screen and didn’t see anything on tongue of concern. I felt relieved.

In May, I started experiencing this strange popping sensation in my neck when I turned my head to the left. Not painful, just odd. Not audible, just a sensation. It happened maybe a half dozen times a day. Not every time I turned neck but often enough. No pain. Starting inspecting neck regularly and noticed some tightness in my muscle and pain when I applied pressure so I went to see PCP. She gave me neck exercises and sent me home. Dissatisfied, I made another ENT appointment.

I took a look in my throat and saw that my right tonsil is larger than the left. It’s certainly not huge and of normal color (as far as I can’t tell). ENT said possibly TMJ. But I don’t have jaw pain... She felt for nodes in neck, then scoped me. Also agreed right tonsil was larger but looked normal. I mentioned bleeding (there was blood in my saliva after hitting the tonsil with the waterpik) and she said that wasn’t uncommon because it’s a vascular tissue. Mentioned my mild but persisting ear pain (it’s not constant but is daily), likely TMJ she said as no sign of infection. Said she would order a neck CT since I still seemed worried. I asked her if she felt that was necessary. She said she would cancel it if it was going to give me more anxiety. I asked if she thought the tonsil should be biopsied, she said no.

That was 2 weeks ago. Since then, I’ve discovered 2, possibly 3 nodes in my neck. Two are under jaw (bilateral) and have to sort of be “dug” out of the skin. They are moveable, I guess, not sure I understand the terminology. But rubbery? How does one distinguish? How can one tell the difference between rubbery and hard? Seem to be pea sized. Non-tender. The other one is just behind the angle of my jaw. Moveable. Can’t really decipher the size and also unsure if I’m in part touching a salivary gland? I feel something similar on the left side but doesn’t seem as big. Again, I sort of have to “dig” under my jaw to find it.

Went back to PCP as wait for ENT is weeks. She was visibly annoyed. Said “why are you so worried about head and neck cancer?” “You don’t smoke, you’re not a heavy drinker.” Then under her breath said “or have had a lot of oral sex partners.” To that I replied, “yes, I have”. I’m not sure how many honestly but probably a half dozen or more. I had HPV on a Pap when I was ~22. All subsequent paps have been neg, including the one I had in May. I had the HPV vaccine when I was 25/26. But my positive was before that, obviously. She seemed agitated by my response and said “well all you can do is call and try to have your CT moved up”. Then I cried and she told me to meditate or do yoga and said I should see an oral surgeon to talk about TMJ.

Since then, my throat has been sore off and on. I prodded at the tonsil and more blood tinged saliva followed. My neck feels achey but I don’t stop inspecting it so there’s that too. I found a few things I can push in and out of place and I’m honestly having a hard time distinguishing between normal anatomy and anything else. I’m going with whatever is bilateral is normal. Tonsil seems achey but again, I’ve prodded at it. Neck popping sensation hasn’t happened in a few days. I do feel twinges in my neck and little fluttering sensations. I keep wondering if I’m feeling my lymph nodes swelling. And if the popping was a ligament getting caught on my swollen node. I know I sound crazy.

So if you’ve stayed with me this long, has anyone else experienced the neck popping sensation or pulsating/fluttery feeling? Stiffness in neck or pressure feeling? Ear pain that is mild to barely noticeable, sometimes intensified by swallowing or yawning or talking?

I’ve done the worst and read every single article and research study possible and have seen all sorts of contradictions and have talked myself down and then worked myself back up 10 times over. I have a young family and a husband who has chronic health conditions so obviously I’m a worried wreck.

I hope I haven’t bothered anyone by this. I know I’ve sought medical advice and been told to chill but of course every story of people being brushed off and delayed diagnosis has me wanting to scream at my providers for acting as though they aren’t concerned due to my age and non-smoker status.

Anyway, my CT is Wednesday and I have a follow-up with an ENT on Monday (I kept this appointment after seeing the 2nd ENT because I wanted another opinion.) I’ll take all the positivity you can muster and prayers if you are the praying kind.

Hello Michael,

I have been fighting my recurrent Invasive SCC, for 2 years now! Mine has returned after my Radiation treatments 1 year ago.

In fact, I just had 2 surgeries within 1 months time, along with my 5th aspiration pneumonia.... ( E. Coli pneumonia !! I aspirated stomach contents).

My tongue Flap is still suture d down ( in front, it is sutured to my bottom lip! ). I've now been in Sutures for over a month. Why?? Because of not healing--- 2 wounds from surgery opened up, the tissues Retracted, from Radiation effects....they also became infected ( yuck!!).

Now, I am facing starting all over in treatments. I'm not sure what it will be yet-- after healing from these surgeries, I see my Radiation Oncologist in July, then my Medical Oncologist .

I cannot shy away from having another Tracheostomy, because it may well be in my future because I have a mass beside my vocal cords as well..

I need to amend my Signature here, to add in all my new cancer.... Sad!!
( Yes, I am 100% dependent on my Feeding tube. I've not had Food, since early March 2017.
I carry my feeding backpack everywhere with me)

Crystal

Good luck everyone with upcoming surgeries!!

my neo-tongue was sutured to the floor of the mouth. That's the plan, ie, there is no plan to release it anyway

I found the information at the Dana Faber site. 1tsp to 1 cup. We wonder if it is more sanitary to buy something already made. I wonder if there is anything like that.

Hi friends,

It's over a month now, and my tongue Flap is still sutured down to my bottom lip !!
May 14th was this latest surgery-- very extensive, my surgeon Gutted my front Floor of mouth, going over 2 Centimeters Deep in places, trying to get Clear Margins from my Invasive tumors. The tumors originated in Floor of mouth and as they quadrupled in size, they grew into / invaded my tongue flap.
All told, this was my 4 recurrence to tongue flap... 5 or 6th overall recurrence. ( plus it spread twice to left lower lip, and extended deep into my chin.

But this recurrence is 1 year after my Radiation treatments. Yeah, really nice....

I go back to see my surgeon June 26th. On the day I say him Post Op, I had a fever, heat & swelling in face , neck. chin-- and one of the wounds as very infected. Yuck, yuck ..!!
Also, the edges of the wounds on left floor of mouth were Retracted and open-- Not healing. Why ? Because that's exactly where I got a super heavy dose of Rads, because of the cancer there (it was so deep in my chin/ jaw, it was inoperable, so they had to really target it with radiation. Surgery After Rads can be a huge problem, as I am showing.

So, over a month with sutures and my tongue sutured down To My lip .
I've no idea what it will look like when released.
I also don't yet know what treatments in doing next.
I see Radiation Oncology in July ( he is a great doctor!! I enjoy seeing him) and I'm awaiting Medical Oncology.

My swallowing ( I can do liquids only) is terribly difficult, and I'm due a Modified Barium Swallow test, but my GI doc says I have to heal from my 2 surgeries first. And then another esophageal dilation.

So, I wait to see what is next for me.
Crystal

Hey Paul! Thanks for the reply. Please find time for yourself and your health. I believe nothing is more important than that.

So the PET/CT results showed that the primary origin site is lungs and from the lungs it has spread to the right leg compartment. Now the doctors are saying it can possibly be a second cancer, lung cancer which has metastasized but there is a possibility that it is TB.

His bronchoscopy biopsy was done today and after convincing the Doctor who was going to perform it, I was able to get some sample of the tissue for myself which I sent to a third party histopathology test lab to double check the conclusions of the hospital as I don't want to take any sort of risk.

Meanwhile, they're giving pain killers and bone strenghthening medicines to dad to relieve the pain which is severe as of now.

I really hope it is a silly issue like TB!!! The results will come out sometime next week, till then I have my fingers crossed.

Stay strong folks.
Love

Hi Chandana
I am 62 and 10 month post radiotherapy for tonsil cancer. I too had ulcers and a radiation burn the full length of my tongue. I was prescribed gelclair which did alleviate some of the pain.i am in the UK so my treatment May have been slightly different. Once treatment finishes just remember the hard work really does start as we all recover at different rates. I found it was bettervto have an idea of what was going to be in front of me as opposed to blindly not knowing.

Hope this helps
Regards

Hazel

Rads are NOT easy for anyone! Even those lucky few who sail right thru rads with barely any noticeable side effects have their own struggles. Unfortunately, rads is progressive. The further you go, the harder it gets. I too suffered thru rads thinking I could avoid doing some of the treatments.... NOPE!!! Towards the end, I was in such bad shape I lost my voice, could barely walk or even stand up without help. My doc took one look at me, never even looked in my mouth or checked my chart... sitting in a wheelchair barely able to lift my head or follow a conversation, I was admitted for malnutrition and dehydration. Guess what? Even being hospitalized didnt stop those rads from continuing... the techs came to get me anyway. I also thought I would just quit then but that wasnt allowed either. My nurse and son ganged up on me and said it wasnt happening that they wouldnt let me quit as they would not sit back and watch me die because I was having a hard time with rads. Somehow I finished all of my scheduled treatments, but only 2 of the chemo doses from being so badly affected by it. Ive been where your mom is and understand it all too well. I wouldnt wish OC or the horrendous barbaric treatments on my worst enemy. But!!! Even though it was some of the hardest days Ive ever been thru, I am alive today and living a different but very good life thanks to so many people helping to keep me on the right track.

As your moms caregiver, watching her going thru this and in pain must be so disheartening and upsetting to you. The following will help to turn this around and make her more comfortable... Bottom line on how to get her thru rads in the easiest way possible... focus on what is controllable! The better she does with her intake, the easier everything will be for her. Every single day she needs to take in at least 2500 calories and 48-64 oz of water... every day!!!! With mouth sores and struggling to swallow this is NOT easy to do. The magic mouthwash will help her alot!!! It will numb her mouth so the sores arent bothering her as much enabling her to eat. Her pain must get managed as quickly as possible to help her feel slightly better. I would definitely advise getting the prescription to get extra hydration too, then get her in there asap. Not taking in at least 48 oz daily will quickly sneak up on her. Dehydration makes patients feel absolutely horrible!!! The extra hydration will instantly boost her up after taking in a couple bags, she will walk out of there feeling so much better than when she first walked in.

Try to give her something to look forward to. Even minor things can mean alot to a patient who is struggling. In all of this dont forget to take good care of yourself as well. Being a caregiver is NOT easy!!! Try taking some time away just for you so you can catch your breath. Do something you enjoy like getting a manicure, going out to lunch with friends or something that will give you some much needed time to relax and unwind. If you have people who have offered their assistance maybe get someone to take your mom for treatments for a couple days a week. Im sure she would enjoy seeing a friend or other relative who she likes spending time with.

Hang in there!!! We're here to help you both.

Hi
I am Hazel and am 10 month post radiotherapy for tonsil cancer h p v 16 + with several affected lymph nodes. Treatment was 35=sessions of radiotherapy and 2 Cistplatin chemotherapy.
I am now 62 year old female who is a wimp but I found positive mental attitude was the way to go for me I was going to kick cancers butt. I did got the all clear =14 January this year .Now on check ups for next 5 years.
My main issue is lack of saliva which I know is a common theme ,but omg until you experiences it I had no idea how much work our saliva did . I use xymelts at night which are a awesome..
I am a non smoker and non drinker haven’t had a drink really in years don’t like the headaches nothing against a drink just can’t cope with head.
Food wise meat Ian still very difficult and bread but toast is fine.
Look forward to many discussions on here
Onward and upwards
Hazel

I also found this mouth wash on Amazon that has very good reviews .
The name is Prevention oncology mouth rinse .

Please let me know if anyone in this group has used and it’s helpful .