This morning much better. I could feel last night like the pain switch was shutting off. Still some discomfort and I can see white patches around the biopsy. I,suspect those will go away once I’m fully healed.

Anyone else have a doctor that will not release results unless it’s in-person? It’s really annoying me and making me wait seems cruel to me.

Hi Julie,

Radiation treatment is cumulative and will normally get worse for 2-3 weeks after your last session. Then, you should see slow improvements. I had to learn to judge my improvement from radiation treatment in weeks/months rather than days. Eating and remaining relatively active was key to my recovery. I would pound whatever food I could using a Vitamix or similar helped. I would dump whatever in there I could stomach. I spent many hours eating every day for those months after rads. Add a 10-15 minute walk, light yoga or chair stretches, a nap, often 2 naps a day were common for me.

Most food tasted terrible for weeks/months. A couple items that never tasted horrible - eggs, green beans, avocados, vanilla ice cream, french toast. I can recall feeling like I was eating cardboard or dirt sometimes. I just keep slamming calories and searching for new flavors. I would measure my calories every day and reward myself if i hit my calorie targets (2,000 i think?) and exercise and mindfulness exercises. Sometimes, suddenly a flavor would come back. Suddenly a banana tasted normal again when last week I had to blend it with ice cream or avocado or ....

As for sleep...everyone is different...hard to say...depends on the other 6 hours. If those are active then maybe 18 is good. If you are not seeing improvement in food intake, activity, mood, etc., I suggest getting with your medical team soon.

Brian will have excellent feedback too so hope he chimes in here as well.

Stay safe and keep the faith - Nels

Hey mates!

While I have not personally consumed the cisplatin drug, however, I have read a lot about it. I can share some insightful information and would be glad if it could be of any help to you guys. Some points to ponder:

The chemo drug cisplatin is used to manage and treat solid tumours and hematologic malignancies.
It works really well for the treatment of advanced cancer of the bladder, ovaries, or testicles.
It interferes with the growth of cancer cells, which the body eventually destroys.
This medication comes in 2 dosage forms: powder for solution or solution.
Some common cisplatin side effects are blood in urine or stools, dizziness, change in frequency of urination or amount of urine, fever or chills, loss of appetite, weakness in the arms, hands, legs, or feet, and increased thirst.

Additionally, some side effects may occur that do not need medical attention. They go away during treatment as your body adjusts to the medicine. Also, if you feel unusual side effects that doesn’t go away, like indigestion, swelling or inflammation of the mouth and rash, consult a doctor rightaway.

I hope this information was helpful to you. Always remember that batting cancers and tumours can be challenging; however, I encourage my mates to keep fighting.

You’ll get well soon and surely, the sun will rise one day super soon!

Isaiah 40:29: "He giveth power to the faint; and to them that have no might he increaseth strength".

Hugs & Love!

https://www.thelotusbiotech.com/product/ciswel-50mg-cisplatin-injection/

Hi mate,



Glad to find out this forum and you guys...

Very much enjoyed reading you perspective. Very positive. I was on PEG diet for only a little over 3 months during and after IMRT to the head and neck.
Im 8 years out now but am having swallowing issues after ORN and jaw reconstruction.
I sometimes contemplate on what if i permanently loose the ability to swallow.
Thanks for your thoughts and the fine work you are doing.

Hello friends, 8 years out from IMRT to head and neck and i have to admit i have not done well with massaging the tissues regularly. Some muscles on my right side of neck are rather woody as is my esphosogus. Difficult to swallow. A few months back had it stretched for thr first time.
My question is, is it to late to do massages?
Will i regain any ground or will it help it not to worsening?
Would appreciate any help in this matter.

Once this has happened you are where you are. I am in the same situation. I’ve been on a permanent PEG feeding for five years. There is no treatment for this situation. Accepting things and ultimately getting the right low profile PEG, and then learning to blend your own real foods to bolus syringe put into the peg is the best long term idea. You don’t want to live on pharma company junk that isn’t ideal nutrition . I miss eating normally and the pleasure derived from it. But if this is the situation, finding acceptance and learning to do this well you can get on with an otherwise normal life. I’m eating healthier than I have in my whole life. It’s improving other aspects of my health. You have to become a student of nutrition for a while but once you have a system down this is fast and simple. There are people here that can help you get started when you are ready. You will have one type of peg first that dangles in front of your stomach. But in a couple months after the stoma has healed properly, you can swap that out to an inconspicuous button called a mic key, and life gets simpler.

Trying to continue drinking and eating normally will ultimately lead to silent aspiration of liquids and foods into your lungs. This will cause pneumonia. While that can be treated with antibiotics, if it happens repeatedly it will become antibiotic resistant and can kill you. You need to accept the cards you’ve been dealt and learn to do this in an intelligent way.

This area while it can be treated surgically, could have long term consequences when vital portions of it are removed. It could impact swallow ability, speech, and much more. Anatomical details of where this is are likely pushing the doctors to this choice of treatment. You need to question them on the factors that are driving their choice and feel comfortable with the idea.

On another note history and the past are just that. They occurred, they are not changeable, and you need to focus on today. Don’t beat yourselves up over decisions in lifestyle or choices that you can’t change. It detracts from your mental well being, and you need to focus on today and what is possible.

The option would be radiation treatments. Probably with concurrent chemo. While a 6 hour surgery doesn’t sound conservative, compared to 6-7 weeks of radiation it may be. There’s not a lot of detail in your post about the surgery and what structures and parts of the anatomy will be impacted. What long term functional or esthetic concerns it may cause.

Personally I would want to understand all that in detail, and the doctors are obligated to discuss that with you. You also do not say if his treatment plan was decided on and developed by a tumor board composed of doctors from different disciplines and training. If that is being determined by the ent only, who is only trained in surgery, this choice is obvious. A tumor board would have both a radiation doctor in its group, and a chemo doc to weigh in on options. The best plans are developed this way, not by a doctor trained in only one treatment modality. I would explore this to end up with the best idea developed and agreed to by a multidisciplinary group of doctors.

Hi Mike

Welcome to OCF! I am so sorry to read of your cancer and your recovery problems. I have some similarities to your experience and will offer some insights. I was diagnosed stage 4 tongue SCC in March 2020. Surgery April 1, 2020 and finished radiation July 8, 2020. Found cancer in one lymph node but it was still inside the node so no chemo only radiation. All check-ups and scans clear since then.

Surgery consisted of removing the right half of my tongue and all nodes on the right side of my neck. Recovery was rough but I could see improvement every couple days or so. Radiation was much slower. It was slower to impact me and slower to recover. I learned to judge my recovery from that in weeks/months. I would journal daily to track my recovery, food, exercise, practice speech by calling family and friends every day, meditation, prayer, etc. Occasionally, I would go back and read from a couple weeks ago and realize I had come further than I thought.

I was eventually able to eat most foods again (avoid the spicier stuff) and speak without much of a lisp. Food took years. Some foods came back in a couple months such as the softer/wetter foods/less flavorful. I had to be very patient with saliva. This has never returned fully and I was told never will. But, I can now eat crackers and other relatively dry items with water or just patience. I probably have about half my normal saliva. Total guess, not sure how to even measure that!

My work is not as physical as yours so that was easier for me to do part time from home and eventually come back to the shop full time. I did get active again soon as possible. I was walking around the hospital halls and dancing in my hospital room alone after surgery. Soon as I got home, walks were 1-2x per day. Eventually, feeding tube removed, I was able to jog about a mile. We just kept adding a little more. Today, I am as physical as ever. Did a marathon a couple years ago with one of my sons!

Happy to offer insights to anything else and hope this helps.

Stay safe and keep the faith,
Nels

Hi Kirks,

Welcome and thanks for reaching out. Please come back to the site occasionally as I am sure you can offer support and help to others based on your experience.

Best,
Nels

Hello GD,

Welcome to OCF. I am so sorry to hear of your cancer and recovery troubles. Feel free to offer some details in this forum as we have plenty of active members that may be able to offer some ideas to help. At a minimum, we can offer hope and encouragement.

Stay safe and keep the faith,
Nels