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After Treatment Issues - immediate post treatment
Yesterday at 06:09 PM
My husband was unable to swallow after rads because his throat was so scarred. He was fed through a tube. His dietitian put him on Nutren 1.5 which has 500 calories in each box. He was on four boxes a day. I put in ice cream and milk with dry skim milk dissolved in it to boost the calories. Eventually when his throat was re-opened through a new procedure, he continued with the Nutren. At that point, I put in manuka honey as well. For breakfast, he would have a couple of poached eggs and a cup of tea. I recorded the calories he was taking in at every meal, so that I could add a bit more calories near the end of the day if he hadn't met the target. If you have a Vitamix and your husband is amenable, you can make him different meals and put them in. The Vitamix does a good job of liquefying everything. Unfortunately, my husband refused to get his food that way. I also made all kinds of thick soups with chicken, cream and veggies. Again, putting them through the Vitamix so that they are really smooth and easy to get down. Do talk to your husband about what kinds of food he would like. It’s very difficult, I know, because not being able to swallow well means he has a disability and it made socializing with friends difficult because so much of that is centered around food. I actually talked to all our friends about changing the focus of our gatherings. They probably thought I was weird but I stood firm on that.
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Introduce yourself
Yesterday at 04:22 PM
I'm not a Doc so I don't know the answer. I can tell you that if it is cancer, waiting only lets the cancer grow. Book an appointment, and you can ask the lab to send the results to Dana-Farber. If the results are not available for your appointment, your Doctor will handle it.

If it is a very long drive to Boston, you could check to see if D-F has affiliate hospitals in Maine. I know they work with several in other parts of MA. Remember, if it is cancer, a long ride is the last thing to worry about.
A quick Google search shows two affiliates in Brewer and Topsham, ME. Note the statement that Dana-Farber is not responsible for the care provided at these locations:
Benefits of Collaborative membership
Dana-Farber Collaborative membership enhances educational opportunities for member hospitals' staffs; offers opportunities for members to consult with medical specialists at Dana-Farber in Boston; and provides members with expedited access to Dana-Farber's main campus in Boston for their patients with complex cancers. Members can also take advantage of access to Dana-Farber support services, such as on-site specialty second opinion clinics, clinical trials, tumor board conferences, and physician lectures.

Dana-Farber is not responsible for the care provided at these locations.

Members of the Dana-Farber Cancer Care Collaborative — Adult Medical Oncology
Berkshire Medical Center Cancer Center, Pittsfield, MA
Cape Cod Hospital, Hyannis, MA
Eastern Maine Medical Center (EMMC) Lafayette Family Cancer Center, Brewer, ME
New England Cancer Specialists, Kennebunk, Scarborough, and Topsham, ME



4 99 Read More
After Treatment Issues - immediate post treatment
Yesterday at 04:17 AM
Great news!!! Congrats!! So happy for you!

Be Well
5 499 Read More
Introduce yourself
Yesterday at 04:13 AM
Hi Keke, I see you are very scared! These are scary times...not only with a cancer diagnosis but also with Covid on the rise again. Have faith. It's okay to be scared. You are brave to ask for support. There is a wealth of info online these days. Take everything in stride. I did not get my staging until surgery was done and over (about a week after surgery to get the results back) as they had to send the tumor and my lymph nodes to pathology. Be well, and there are lots of us out there to help and support you and your husband! Make sure to take some time for yourself too!
5 357 Read More
Introduce yourself
11-20-2020 03:20 PM
Hi and thanks Dizz_zzey. Yes since I found this forum I have been spending a lot of time here, this is all so new for me and I am finding it comforting to read through some posts, there is so much information and support.

Take care also!
5 186 Read More
Medications, Treatment, Procedures
11-20-2020 04:42 AM
My dentist gave me Moisyn. Comes in a sprat or rinse. I like it. For me it lasts several hours
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Menus, food ideas
11-20-2020 04:28 AM
Hello Phoebe, your sister might want to ask her Rad On Dr about “magic mouthwash” it has lidocaine in it to help numb the mouth to help with eating. Some Drs call it Radiomix. It helped me a great deal.
2 109 Read More
Activism
11-19-2020 04:36 PM
I found it really hard to find recipe books suitable for fellow tonguey patients. So I'm using my background in food to write my own recipe book. I have 66 recipes, which is 11 recipes per chapter (soups, smoothies, light bites, sauces and gravies, main meals and desserts). I can't wait to get it out on sale as it'll help so many people.

I'm also writing a book about the last 18 months, from the day I was diagnosed, though to all of my treatments, plus a few stories about my life before Larry invaded my tongue.

Both books will be available in hard copy as well as digital, so it means that it'll be easy to get to a wide, global, audience.

If the 1st book is successful, then I'm already planning book2 and possibly book 3, but we'll see
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After Treatment Issues - immediate post treatment
11-19-2020 04:31 PM
So firstly a huge thank you to everyone who stopped me from jumping in from having some dental work done. I went back to my medical team and asked their advice. They booked an appointment for me with the hospital dentist, and it turned out to be an awful appointment. So bad that I had to complain and ask never to see her again. In the UK your dental appointments are free if you are having dental treatment in hospital and the treatment is related to your condition. I said I would rather pay to see a private dentist, trained in OC before seeing the hospital dentist again.

Anyway, I digress..

My consultant told me not to have my wobbly tooth (bottom front) removed as he'd rather I wait 3 years post radiotherapy before having any healthy teeth removed etc as I had 65grays per fraction. I thought that might be the case and explained that I had mentioned it on here.
I asked if it were OK to have a deep clean done as I have developed gingivitis and periodontitis, so I really want to have everything cleaned to prevent anything worse from happening. They said that's not a problem.

At the dentist, I explained what my consultant had said and will just go for the deep clean.
The dentist explained that whilst I am at a risk of osteonecrosis, my tooth is no longer attached to my jaw, but only help in by my gum and that with the deep cleaning he will be doing, the tooth will fall out and he would much rather take it out now than cause any issue whilst cleaning and the tooth does it's own thing.

He also showed me the x-ray, and yup, my wobbly tooth is not in the same place as the rest of my teeth. I told him to go ahead.

My dentist said that he would also give me antibiotics as a precautionary measure as cleaning can bring up bacteria which he doesn't want to infect the gap left by the tooth.

After I agreed to the removal, he used a pair of pliers to gently pull the tooth, and in less than a couple of seconds it was out. He's then used some stuff to make my bottom teeth stronger and joined together, but still looking like teeth, so that my my teeth won't collapse any further, and I can now bite into my food.

As well as giving me antibiotics, he told me to rinse with fluoride mouthwash once a day, take fluoride toothpaste and rinse my mouth out with salt water. I explained I have a water pic, which he said was perfect for keeping everything clean.
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Currently in Treatment
11-17-2020 11:56 AM
Hi NonaChris. Sorry to hear of your new cancer. Are they considering this a reoccurrence?
I also had SCC Stage 1, but to the Rt. lateral tongue. Surgery was 7/22/2019. Still high risk for reoccurrence for one more year. My surgery was done with laser and scalpal, then closed with dissolvable sutures. I had a problem with sutures coming through the tongue as it healed. I had small amt of yellow bloody drainage where one of the sutures was coming through, but surgeon said it was not infected. Eventually all healed well. Lots of burning pain that lasted months. Took low doses of Tramadol for the first week, then Tylenol and later Gabapentin that was given to me for arthritic pain but worked well for my tongue pain that was persistent for several months. More burning type pain than anything and certain foods seemed to set it off.
The staging when you get it will determine the treatment needed that I’m sure your aware of. Keep us updated please.
1 221 Read More
Eating, Speech, Swallowing, and Alternative Feeding
11-15-2020 07:09 PM
Hello-
My sister just finished final week of radiation for HPV + cancer on her tonsil and a few lymph nodes. Her mouth is burning from things like cool carrot soup, cool asparagus soup and chocolate pudding. Why are these bothering her and what can she do? She had success w tapioca pudding and Soylent...
0 63 Read More
After Treatment Issues - immediate post treatment
11-13-2020 06:19 PM
Hi Stessy,

Where are you in the UK? I'm North London.

For me, whilst radiotherapy is brutal, it is worthwhile in the long run as it hopefully gets rid of any cancer and pre-cancer cells that are microscopic. It's hard work, but if I had to do it again, I would.
13 1,466 Read More
Currently in Treatment
11-01-2020 08:52 PM
I did call the triage number and the doctor was contacted. The doctor gave me the all clear to stop. There was no explanation about a schedule or stepping down from the dosage. It was more like take the tylenol every 6 hours, take the Gabapentin every 8 hours and if you have a number between 7-10 for pain then use the oxycodone. I have it written down on a sheet the nurse gave me before I was discharged.
Thanks for your insight. I will have questions for my post op this week.
So many different version of the same situation.
Warm Regards,
Nona Chris
4 261 Read More
Eating, Speech, Swallowing, and Alternative Feeding
10-29-2020 12:22 PM
I've responded in a private message, thank you again.
6 1,009 Read More
Symptoms and Diagnosis
10-25-2020 09:35 PM
Urgent care visit confirmed 3x3cm lymph node. Ultrasound will give the real answers. Trying really hard to believe that the ENTs I saw earlier in the year were correct about my tongue and that this is unrelated. Paperwork from urgent care says 3x3cm right anterior cervical lymph node not tender movable...really holding on to the fact that it’s movable.
6 519 Read More
Introduce yourself
10-25-2020 04:29 PM
I felt the exact same way about getting in to an HBO chamber. I convinced myself that I couldn't do it because I too have anxieties and major claustrophobia. If it ends up being the recommendation for you try not to sweat it. I believe most chambers are see-thru like the one I was in which makes it so much better! My nurse never left the room. I could see her the whole time. I took two xanaxs for anxiety for my first dive. After that I went down to just one Xanax to help me sleep, which I did for almost every dive. If I didn't sleep, I watched an hour and 1/2 of TV shows. Hope this helps.
3 644 Read More
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