Active Threads | Active Posts | Unanswered Today | Since Yesterday | This Week
Alternate feeding solutions, PEG
1 hour ago
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.
3 26 Read More
Alternate feeding solutions, PEG
2 hours ago
My husband had a leaking tube as well as granulation at one point in his treatment. The interventional radiologist looked at it and said he could replace it but it was complicated. It involved putting in a tube at a nearby spot, etc, etc. He sent us to a wound specialist who suggested doing what ChristineB said in her post above. The visiting nurse told us never try to clean the insertion point by rubbing it too hard. We should just dab it gently with some gauze, then put the cream on it and cover it with the drain sponge. Hope this helps.
3 26 Read More
Alternate feeding solutions, PEG
6 hours ago
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!!!
3 26 Read More
Medications, Treatment, Procedures
7 hours ago
Hey everyone,

I didn't gel with my Head & Neck specialist, or much of her team. When I got my diagnosis from a dental team they made me feel as if I was in safe hands, but the next day I met with the team at the hospital which I was going to be treated at and I found their bedside manner very blunt. I understand my cancer is life changing, I understand that my treatment is going to be tough, but I felt like the wrote me off.

They recommended I went for a 2nd opinion at a different hospital, who said almost the same thing to me but they said it in such a way that I felt the fight in me want to get going. Team 2 were far more positive and pro-me! Team 2 also introduce me to a 3rd team (crazy right!) who said I fit the criteria for an immunotherapy trial (689). It would run with my treatment.
They said that I would have 2 doses of immunotherapy before surgery to try to reduce my tumour (my tumour covers the left latteral side and is 1.5cm over the halfway point into the right. They will reduce 2/3 to 3/4 of my tongue. The base is looking good though). I will then have a partial glossectomy, neck dissection on both left and right, followed by reconstruction.

I'm going to have 30 sessions of radiotherapy and chemo thrown in with the immunotherapy on top.

I met Team 3 last week and their encoragement and positivity blew me away. They were honest and gave me worst case vs best case, which is far more than Team 1 did.

So for anyone out there who is at the beginning of this awful journey, always get a 2nd opinion and if you don't get on with your team then do find yourself someone who makes you want to live and fight to live.
0 10 Read More
Coping / Anger and Fear
7 hours ago
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 smile
3 1,590 Read More
Alternate feeding solutions, PEG
12 hours ago
My husband’s tube has pretty bad leaking, we change gauze like twice for each feed, is that normal? Granulation kept forming around the site, his doc treated it was silver nitrate, and removal extra skin, it kept coming back.

His medical oncologist placed g tube for him, but should a GI doc do that?
3 26 Read More
Symptoms and Diagnosis
15 hours ago

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.
0 32 Read More
Currently in Treatment
Yesterday at 03:34 PM
Hi Michael,

I answered more thoroughly on the Introduce yourself thread...

If you read my Signature, you'll see that my Primary surgery was in 2017. ( glossectomy, mandibullectomy, neck dissection, etc)

But this year, I've had to begin all over again Because My Cancer Has Returned .

I don't know what's coming next because I have to first heal up from these two surgeries from April & May. But I can tell you my calendar in full of appointments. And I have very complicating comorbidities, like my underlying Genetic Immune Deficiency. Yep, I was born Immune deficient. Every 28 days I am admitted to the hospital to get my infusion of intravenous Immune Globulin. That replaces a small part of what I do not produce...

Anyway I am quite tired now!! And because of my continuing aspiration pneumonia problem, they are also discussing taking me off of my liquid diet. And that's all I have left !

I will get through it somehow..

34 1,204 Read More
Introduce yourself
Yesterday at 03:21 PM
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)


Good luck everyone with upcoming surgeries!!
6 278 Read More
Medications, Treatment, Procedures
Yesterday at 12:12 PM
When I made the saline for the saline wraps for his radiation burns, I boiled the saline and let it cool down before I used it. You may want to check with your pharmacist if he is going to rinse his mouth with it.
2 39 Read More
Currently in Treatment
Yesterday at 10:14 AM
my neo-tongue was sutured to the floor of the mouth. That's the plan, ie, there is no plan to release it anyway
34 1,204 Read More
Introduce yourself
Yesterday at 09:36 AM
I still have PEG.

I had trackie twice. You will have to have trackie if you have surgery and radiation

I have to say trackie is not a pleasant thing
6 278 Read More
Medications, Treatment, Procedures
Yesterday at 01:53 AM
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.
2 39 Read More
Medications, Treatment, Procedures
Yesterday at 12:26 AM
My husband had a partial glossectomy on Wednesday and we aren’t sure the proper way to make a saline solution for his rinsing. Or is this something that should be bought pre-made. Thanks for your help
2 39 Read More
Currently in Treatment
06-16-2019 11:12 PM
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.
34 1,204 Read More
Introduce yourself
06-15-2019 08:10 PM
Son of Patient,

I kind of figured they were looking for some type of cancer with the PET/CT, but it’s a possibility of it being TB you mentioned, which I know nothing about, but it seems the lesser of two evils!

I hope for the best whatever outcome, and feel you’re doing the best you can among the way, and hace my admiration! Here, there are immuno therapy treatments now making possible dreams a reality, so I hope that would be an option. If it’s needed.

Take care for now, and my thoughts are with you along the way!
23 2,659 Read More
Introduce yourself
06-15-2019 02:11 PM
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.
23 2,659 Read More
Introduce yourself
06-13-2019 11:45 PM
Son of Patient,

Good luck with the PET/CT results!

I’ve had back problems for 38 years, with several slipped and bulging discs since I was 21. A year or so later after that, I had intradiscal therapy called chymopapain (discontinued) injection into the spine which was only done at one place in the US. It helped, and brought me here today. it seemed like when i exercised by back improved. When I didn’t exercise it seemed as the back got weaker, and the pain increased sometimes.

As far as the back, with doctors appprproval, I think physical therapy to be one of the best treatments, if they approve it.

Now, I have osteoporosis of the femur. I’m suppoaed to start physical therapy one day, but haven’t found the time between all my doctor visits, but I’ll have to make room before it gets worse or need surgery!

Good luck with everything
23 2,659 Read More
Introduce yourself
06-13-2019 05:22 PM
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

6 227 Read More
Introduce yourself
06-13-2019 05:44 AM
So we moved to a different city in January and took a second opinion from one of the best government Hospitals here. This doctor over there did a thorough physical examination and came to the same conclusion that whatever is mentioned in MRI report is simply RT sides.

Fast forward to April, dad started complaining about back pain and pain in his hips, we took him to a "reputed" ortho and told ortho about his history of tongue cancer, he took X-rays of his hip and after some more examination asked for MRI of LS spine. We did that and he concluded it has nothing to do with cancer and put him on meds for slip disc pain relief and slip disc related physiotherapy which he said will take another month to show results. Dad's pain didn't reduce and post one month when we went back to the doctor he mentioned it's possible that given his age, it is arthiritis related pain and prescribed meds for arthiritis which we didn't consider because it felt like he's just doing hand waving instead of a proper diagnosis, meanwhile we took second opinion from another ortho and he also concluded slip disc and prescribed some other meds and alternative massage therapy for one more month.

We wasted 1 more month but the pain didn't come down, 2 days ago it became so severe that he could barely walk. We went to a third ortho and he asked for hip MRI. The hip MRI showed osteolysis in pelvic region and soft tissue development. We got him admitted to the best hospital in this city and had the best oncologist here look at him. The oncologist prescribed a PET/CT scan and we got the PET/CT done today morning. The results will come by evening. I'm really worried. I hope everything goes well.
23 2,659 Read More
Introduce yourself
06-13-2019 05:06 AM
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.
6 227 Read More
Introduce yourself
06-13-2019 04:21 AM
Welcome to OCF, Hazel! Im glad you found our site! OCF is the largest online oral cancer (OC) site dedicated to providing correct and up to date medical info for OC patients and their caregivers.

Its always great having survivors join our ranks! Being 10 months post rads, you are still in the middle of your recovery phase. The worst of everything is many months behind you. A complete recovery takes 2 years after finishing rads. You should notice more improvements with your dry mouth and sense of taste here and there up until about the 2 year post rads mark.
1 109 Read More
Introduce yourself
06-12-2019 07:51 PM
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
1 109 Read More
Introduce yourself
06-12-2019 07:11 PM
Dear Chandana and ChristineB,

Chandana, please follow the advice of ChristineB. I might suggest one other mouthwash that had some effect for me: turmeric - one teaspoon of turmeric and 1-2 cups of water. After swishing it around, your mother can swallow it, though it shouldn't happen more than a few times a day (reduces inflammation, allowing for intake, and some studies show that its ingredient curcumin can fight cancers). My doctor is Indian American and apparently turmeric is frequently used in India; plus, there is a lot of research and new grant monies for further testing.

And, yes, cisplatin can cause hearing loss. I had to buy hearing aids this week - and they are not cheap and are probably never covered by insurance! My oncologist believes that cisplatin was the right and most effective chemo med for me with the best chance of success. I won't know for a few months if my throat cancer is eradicated; if so, I'll be okay with everything, but if not, it will be a very bad day.

I still have my PEG feeding tube but am now eating solid foods at least twice a day and am about ready to get off of it. BUT, without the tube I would have lost at least 50 pounds - and I really don't have it to lose. I had a formula that kept my weight nearly the same for seven weeks of treatment. Please look into a tube immediately. Not pleasant getting it in but it makes a world of difference.

Take care! DavidDH
6 227 Read More
Introduce yourself
06-12-2019 06:10 AM
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 .
6 227 Read More
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