Would appreciate info from the experienced
I'm 73, had TORS for a new SCC right tonsil in May of 2022 along with radical neck dissection for carotid ligations. Did "OK" in the weeks following TORS then had 30 IMRT's in July/Aug. I have to mention too that I was diagnosed in 2007 w/SCC left tonsil and lymph nodes resulting in CISPLATIN weekly chemo concurrent with 35 daily IMRT's ending in Oct , 2007. Took a long time to return to a "new normal" but about 2010 I seemed to be on the right road.
Then I had this most recent episode. I am now almost 6 weeks post IMRT's and it just doesn't seem like I'm progressing much, if at all. No appetite still, liquids no problem but boring, soft food at times doable but difficult, the area behind the very large neck dissection scar (23 staples) is still hard as a rock with a large "sack" of inflammation covering my Adam's Apple. Still very sensitive behind it when I swallow. Overall sense of wellness is very weak. Attitude difficult to maintain but I'm trying to push through. Right shoulder dropped about 2 inches due to the Carotid Ligation surgery but seems to be slowly pulling back up. But, it causes back pain due to having to support the weight of my right arm. A sling helps temporarily.
Largest single issue is very low Blood Pressure. Frequently have bouts of 70's/40's. I have lost about 30 lbs. so I cut my BP med in half and started taking it at night to let much of it's half-life dissipate while I sleep. This helped tremendously. No my low bouts are only 1-2/day and duration is usually 30-45minutes. But during that time I am lightheaded and have absolutely -0- energy (radiation still working?_
Could any of you with this or similar experience tell me how long (=+/-) before you started seeing a
"new normal" that you felt you could live with. Eating? Swallowing? Pain?
Overall it has been just over 4 months since TORS and I was hoping I would be further along. Perhaps I'm impatient? Too soon? Your thoughts, please.
Comments
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Jkinobay sorry to see you go through all this. If you can give a first name I will address you with that.
Your latest bout with this evil disease is no fairy tale, this stuff is tough to go through.
Don’t kid yourself you had heavy-duty treatment and it takes a while to recover.
And you went through treatment of operation and radiation in generally the same area.
I know people want to know how long will the effects last like eating and taste but there is no hard
and fast rule.
It could take 8 weeks for one person and 3 months or more for another.
Take into account that it is possible previous radiation could possibly have some kind of effect here
such as taste and swallowing making it take a little longer.
I would give it another month and if you feel you are not recovering enough talk to your care team.
Recovery from H&N cancer treatment is a slow process and is gauged in weeks and months, not days and weeks.
Also, take your age into account as a factor, I know I don’t heal up from anything as quick as I used to when I was younger, it takes a while.
Sorry, I am not really telling you a lot here except it is a slow process and takes time.
You just have to be patient.
Then one day you will suddenly realize hey I could taste that a little better, or I could swallow a little easier and the pain is less now.
My first treatment was throat cancer with chemo and 35 rads and I couldn’t eat for months everything went through my feeding tube, everything.
Did they mention any kind of different radiation for this second time around?
I had a second round of radiation myself and it was recommended I get the Proton therapy but I didn’t feel up to traveling for it so instead I had radiation with the Cyberknife locally.
Also, would you say the surgery you had was pretty deep and involved even though you had TORS and that could be a factor in progressing and the soreness you still have?
Number 1 if you think there is a problem with your recovery or any other unusual things you are experiencing get with your care team and ask them, they know your situation better than anybody.
OK, so your blood pressure have you asked your doctor about that, as I think that would be fairly serious?
You say you lost 30 pounds are you extremely underweight now?
That could affect your BP I think.
Do you have a feeding tube so you can get calories in easier?
I am not sure if any of this helped that I just blabbed about but I hope I am on track a little.
I hope you are feeling better soon.
Take Care God Bless-Russ
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Thank you for the prompt reply/input. My name is Jim.
All of what you say is good advice but as you well know everything is very different from the patient's POV. To answer your basic questions, I had 35 IMRT's in 2007 to the left tonsil/neck area and another 30 in 2022 to the right tonsil/neck area. There was no mention of Proton treatments or any other type of radiation treatments. I was told that the equipment being used this time was installed less than a year ago so I presume it to be the latest technology. I feel like it was very, very focused and I was told the doses were much lower than in 2007 in part due to the improved technology.
In 2007 my rad Oncologist insisted I get the PEG tube and he was exactly right. Following a dieticians guidelines I could control my hydration and nutrition very easily. It was purely a mechanical function. Had nothing to do with taste, ability to swallow, appetite, etc. This time though I was told the PEG tube would not be necessary. They recommended trying without it and offered to place one at anytime. I made it all the way through everything without it and really no major problems. Which is the frustrating part. Two weeks post-rad treatments I was doing OK. Struggling, but OK. That was about a month ago and since then my situation has deteriorated. I'm confident that it is all normal given my age, the fact that this is the second time, etc. But it is frustrating. I wish now I had had the PEG placed.
As for my weight, though I have lost 30 lbs. I am by no means in danger. I was at least 20 lbs. overweight to begin with. I am using a BOOST protein drink that has 530 calories in it but it is very thick and worsens my phlegm and coughing/swallowing issues. But again, just have to push on through it I guess. I am thinking of taking MUCINEX or some form of GUAIFENESEN to see if that helps reduce the phlegm problem, which BTW has gotten much worse SINCE treatments ended than before. Again, I'm sure just a normal, delayed reaction that for now I'll have to continue to live with.
As for blood pressure crashes, they are getting much better having started taking my BP med at bedtime. Meanwhile my RadOnco wants me to see a Cardiologist for their take.
But, as you and many others here well know, attitude is one of the most important weapons but at times is the most difficult to maintain. And that's where I am. I feel like I'm and old sick guy and just don't have much push left. I am in fact an old sick guy but I didn't feel like one until the last few weeks. Almost as if I am going in the wrong direction.
I'll make it though. My girlfriend, my staunchest supporter, will not accept anything less.
Thanks again
Hope your health continues to improve as well.
Jim
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Well, Jim the way you describe it, you are doing everything as you should. You followed your physician's suggestions and guidelines and were recovering well. It seems you have just slipped into a tough spot here and have a little setback. I know how you feel I have also faced times when I thought the situation would never change and I was feeling bad but one day you suddenly notice you feel just a little bit better. Or you can tell something has changed. I think you have the right perspective of pushing through it or basically just do what you know needs to be done by getting enough nourishment and liquids in and following your doctors and you will get through this. You are using the Boost VHC which has a lot of calories per 8 ounces. Mucinex may definitely help the phlegm problem but also swish and rinse as often as you need to to keep it cleared out with salt and baking soda mix.
Salt and Baking Soda Rinse Recipes
Soda and Salt Mouth Rinse
1/4 teaspoon baking soda
1/8 teaspoon salt
1 cup of warm water
Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.
Soda Mouth Rinse: A Good Rinse for Before You Eat
1 teaspoon baking soda
1 cup of warm water
Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.
Saltwater Mouth Rinse
1/4 teaspoon salt
1 cup of warm water
Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.
Salt and Soda Rinse for Gummy Mouth
Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."
1/2 teaspoon salt
2 tablespoons baking soda
4 cups of warm water
This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.
You have addressed your blood pressure situation and your doctor is aware of it and wants you to see a cardiologist which may shed some light on it.
I know where you are at I was the old sick guy in the hospital in 2019 and was going in the wrong direction. I had resolved that I would not be leaving the hospital and spoke with a chaplain and he understood and prayed with me and I figured my next step was hospice but by God's Grace and only God's Grace, I am still here so what we think impossible many times is in fact not. Prayer and faith are a huge help. I am glad you have some great support by your side because that can make all the difference someone who Loves and believes in you.
Keep us posted and if I can be of any help please ask.
Wishing You the Best
Take Care God Bless-Russ
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I am in my 7th year of remission from stage 4 throat cancer..(HPV related)...but still having problems due to aggressive treatments...
It does take a lot of patience...as some people heal faster than others.
My problem is severe build up of scar tissue in my mouth....which unfortunately doesn't help when eating solid food..especially spicy..which l used to love
This has not changed over the years...but you get used to it...
At least l have my life...albeit greatly diminished..
Sorry to sound so negative...
Perseverance is a good word.. !!
Good luck..!!
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Wow, Stage 4. You are one tough cookie to have fought through all of what I know you went through and are still with us 7 years on.
Interesting you mention the HPV factor. My first throat cancer in 2007 was HPV positive Squamous Cell Carcinoma which my Oncologist at the time told me was a major benefit in that HPV + cancers respond well to treatment and are usually less aggressive. Long story made short, I was adopted, abandoned as an infant and 45 yrs later researched by Bio Parents and found out that my BioMom died of cervical squamous cell carcinoma and was very likely HPV + b/c she had a lengthy arrest record (and died in prison) for things such as theft, larceny and prostitution. So thanks Mom for the gift that keeps on giving. BUT, this new cancer on the opposite side, although it was SCC as well, tested NEGATIVE for HPV. I am obviously not a Doc but I just think that would be impossible. I'm told once you have HPV you have it forever. Anyway, HPV+ cancers (especially 16) are nasty.
Well, try to keep your spirits up front and positive. I mean, you've fought a long hard battle as we all have . For that we all deserve the internal satisfaction of having "walked away from a trainwreck".
Better days soon my friend. Keep up the good fight. So sorry you are a member of this select Club but glad you are here.
Jim
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Hello again..
After reading some of the other comment's.....do l need to introduce myself to this forum. ??
I don't see anything regarding introductions...so l will add here that my name is Christine..
l am a 77 year old female..
Born and raised in the county of Northumberland. England....now living in Massachusetts.
T.T.F.N.
(Ta Ta For now)... a colloquialism from England. !!
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Well, welcome to this prestigious board...although none of us particularly want to be here.
How long since you came to America? Glad to have you of course. Turns out my biological roots are the Higgins clan from England so I have equal amounts of respect and curiosity for you Brits.
I think HNC in ladies is much more rare than men. Still, obviously a problem.
By way of intro I am a 73 year old man. I had my first HNC, left tonsil in 2007. Chemo & IMRT's took care of that and 15 years later I am still NED (No Evidence of Disease) on that side. BUT this year a similar but new cancer reared it's ugly head on my right tonsil. I had TORS and neck dissection in May, IMRT's in July &August. Still working through the healing process. Hoping for my first PET with NED result in Nov or Dec.
Anyway, hope you are well down the road to recovery and are doing well. Share what you care, when you can.
Take care
Jim
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