8 month post surgery problems.

sw33tpotato

Hello everyone,

I am 56m have a history of tobacco abuse for at least 40 years. Last year September I was diagnosed with stage 4 squamous cell carcinoma in the oral cavity. The doctors told me the lymph nodes have been affected and I need to get rid of my lower jaw and have a bone transplant from my leg to the site. I had surgery in November followed by Radiation and chemotherapy.

Things were going well until I started developing side effects which include insomnia due to mucosa keeping me up, unable to eat food as my lower jaw was infected too. At the site where the cancer was, the doctors placed skin flaps. The main issue I had was drainage from the flaps stitches. When I asked the doctors, they said it is normal for the drainage to occur.

Things stayed the way they were, once I stopped the treatment, I felt a little bit of relief as the radiation therapy was too much to handle. I finished in March.

Turns out the tumor is back and things are getting worse. I started chemotherapy again as the doctors think another surgery is too early. The cancer metastasized to my neck and the pain was unbearable. For the past 4 months, it was increasing in size until my most recent scan where we got to know it is shrinking.

I have some concerns as of now which are not answered by the doctors. I have been asking them these questions every time I see them but all they tell me is "It is normal for it to happen" or "I am sorry but there is nothing else to do". I really do need some consultation.

1. My neck becomes really tight all of a sudden and the doctors have no explanation for that. The scan doesn't show any type of inflammation or tumor obstruction near the windpipe.
2. the stitches from the surgery have blended in with the skin but I do now know how there are holes where yellowish/whiteish fluid drains from. At the moment I have around 4 spots are it gets annoying at night.
3. My lymphedema gets worse after every dose of chemotherapy and immunotherapy. Sometimes my eyes cannot fully open.
4. My radiation-induced coughing does not seem to get better even though I try my best to rinse my mouth with salt and baking soda. Due to this, for the past 8 months, I haven't slept flat, but rather I have been sleeping upright.

wbcgaruss

Hello, sweetpotatoe, and Welcome to the CSN H&N discussion board.

I don't know if I would call it tobacco abuse, but you can, back in the day almost everybody smoked and it was so accepted in society and we really knew it was bad for us but we enjoyed it and continued anyway until it caught up with us.

Anyway so sorry you are here but we all showed up here at one time or another just like you hunting for support and answers and hope and I hope you find the help you need here.

I would just be able to give you a short answer tonight and can be more in-depth tomorrow.

The mucosa and side effects you describe seem to be the norm for this kind of treatment. All you can do is spit and rinse a lot till you are finished with treatment and it will eventually subside. There is no magic solution for it. Sleeping in a recliner is recommended.

You don't say what hospital or cancer center you are dealing with, are you with a teaching hospital or major cancer center?

If not I think you may want to consider it. Or at least get a second opinion at one.

If you are at a major cancer center great.

It seems you had a very serious cancer and a major operation and now the return of cancer.

Regarding your four questions at the end, I would say your neck being tight is from your operation and the radiation. And the other three questions unfortunately are probably normal effects since you are back in treatment again and probably won't abate till you finish treatment.

Also, I would question your doctors about the drainage from your surgery and ask them if the area is in the process of healing, I think the drainage may just be till more healing progresses.

Please give a little more info on where you are being treated. Just curious.

You have certainly gone through the battle with this evil disease and are standing strong.

Do your very best to stay positive, it helps a lot. I have read stories of people who have battled in situations like you are in and they persevered and won and you will too. Stay strong, stay positive, and pray a lot, it helps you communicate with God and heal and keeps your mind focused on winning this battle.

Also, our motto on here is NEGU (Never Ever Give Up)

I will pray for you also.

Wishing You The Best

Take Care, God Bless-Russ

TonyB2023

Hey Sweetpotato!

First, weren't you taught anti-lymphedema massage for your head and neck? If not, get with a speech pathologist for instruction. You should have started them as soon as you started radiation to prevent edema. Eventually I was given a pneumatic head-piece and vest that does the massaging, though the manual massage is probably better. It is called FlexiTouch.

Secondly, I developed fibrosis in the area where the radiotherapy was concentrated almost immediately after completion. Miofacial massage is meant to alleviate the stiff tissues caused by radiation. It is a specialty, so you have to push your provider for a professional that is certified. It calls for the use of implements like roller-balls and dull, hard blades and can be painful.

As for the tightness in your neck hitting suddenly. I started getting painful muscle spasms in different quadrants around my neck almost 2 years after my treatment. Radiation can cause side effects months, even years after exposure. I asked at least 3 oncologists and 2 each, ENT and speech pathologists about it and they had no clue. My last oncologist did refer me to acupuncture and physical therapy for it. I've had 3 sessions of each and hope to say it is working. I have a lot fewer spasms now, though I think it is simply the deep tissue massage the therapist does, as well as the stretching exercises he gave me to do once or twice a day.

Stay positive!

Tony

steven59

Throat cancer treatment is barbaric, but it's the best we got and I appreciate the additional time. I gut to retire!!!

Some hospitals prescribe pt's for lymphedema and speech/swallowing, some just send the patient home with a 200 page book. I got lucky and was taught neck exercises/stretches from one pt and swallowing from another pt. These things really help with side effects however even with all the pt and pain management the Dr's have at their disposal radiation is beyond unbearable for some of us. A nurse asked me if I ever tried edibles and I went strait to the nearest cannabis store and bought 3 bags of THC edibles, it helped.

I hope the treatment's successful in making you cancer free and if you can do the therapy you'll appreciate the results.

TonyB2023

Sweetpotato,

The sudden tightness and, in my case, painful cramps are called CERVICAL DYSTONIA. Neck tightness, pain and cervical dystonia are treated with physical therapy aimed at improvements in range of motion and decreased pain, nerve-stabilizing medications (pregabalin, duloxetine), and botulinum toxin injections in selected patients. 

Treatment for cervical dystonia is focused on release of myofascial scar bands with restoration of range of motion. These therapists may employ massage-based and motion techniques to release scars and stretch the muscles.

As I said before, I'm receiving acupuncture on the back of the neck and trapezius, as well as facia release massage. It is working wonders.

As for sleeping, I slept with a glass of water next to the bed and a trash can to rinse and spit. Then I'd swallow a couple of drinks to further clear my throat. That would go on all night long, but eventually eased up after about a month after treatment ended.

sw33tpotato

Hello, thank you all for your comments. I am undergoing a clinical trial. The cancer has gotten much smaller but the doctors are afraid that since it was a stage 4 tumor, it is difficult to get rid of it completely. Around 4 months back, I noticed my tongue had gotten bigger. I did a CT scan it showed a jugular vein was blocked due to the cancer, they prescribed me some blood thinners with the hope that the vein would flow smoothly and the swelling would reduce.

Question, did anybody else have this phase I was able to speak and swallow liquids but right now I can barely cough up my phlegm due to the restrictions.

Another question I have is why do I get so many infections. Every month there is an infection in places where the surgery was and the doctors just prescribe antibiotics but they think it nulls out the immunotherapy effects.

The surgeon thinks that I may not be able to eat again. This has made me depressed because they tell me I will not live for long (probably a year or two) and now they tell me I may not be able to eat again. I live in NJ, is there a doctor I can see who will be able to give me a second opinion because many doctors I asked around do not know why these symptoms are happening?

Once again I thank you all for your assistance.

wbcgaruss

Hello, Sw33t, sorry to hear you are facing another issue. Sometimes we get through one thing and before long another issue pops up. I hope the blood thinners work and reduce your swelling. I never went through your situation but I had a jugular vein removed during an operation for cancer. Our tongue goes back in quite far so that is why the swelling is causing your issues.

As far as to why you are getting infections I have found some information. I think as long as you still have cancer and are receiving treatments it compromises your body and immune system--

People with cancer may have a higher risk of infection because of changes in the immune system that control their body’s defense systems. Cancer and cancer treatments can affect the immune system and other body systems in different ways. People with cancer might be more likely to get infections because of:

• The cancer itself
• Certain types of cancer treatment
• Poor nutrition
• Other health problems or medications that aren't related to cancer

https://www.cancer.org/cancer/managing-cancer/side-effects/low-blood-counts/infections/why-people-with-cancer-are-at-risk.html

Not being able to eat is certainly depressing but is always a real dreaded effect we may encounter when dealing with H&N cancer. You certainly have some serious issues and I do not know of a doctor to recommend in NJ but try to do a search on the internet such as "New Jersey Cancer doctors and oncologists near me" and you should get the results you need. Below is one link that may help you--

https://health.usnews.com/doctors/oncologists/new-jersey

I hope you soon turn a corner and have success with some of your problems.

Wishing You The Best

Take Care, God Bless

Russ