Stories of Success and treatments or activities that worked

Posted by simplygrand @simplygrand, Aug 8 1:53pm

Hi everyone. As a newbie here who hasn't started radiation yet (starts next week) I found the information here to be terrific and it gave me lots of ideas. But one negative has been the very sad stories that so many of us are going through. To be honest it was daunting to read some of the stories of suffering through extreme difficulties. I absolutely understand that this is the place for that and the support that is offered is both important, relevant and an outlet for some of the frustrations that many are going through.

However, from the perspective of someone who is just starting out it was (to be honest) kind of scary, to the point where I almost dropped out because it was so depressing.

I'd like to propose that we have a thread that's kind of uplifting to provide encouragement to those of us who are new and specifically hear about success stories, encouraging results and products or services that seem to work well. This would be someplace where those just coming into chemoradiation or just coming out of it might find a place of hope.

Well, that's it. I'd appreciate hearing other thoughts And if it resonates let's keep it going.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Profile picture for tbveblen @tbveblen

@linda90
My treatment ended in January, just now back to stable weight. I relied on High Calorie Boost, which I mixed 50-50 with coffee, decaf in the afternoon and evening. During the worst of the radiation I couldn’t eat anything, drank six Boosts a day. I have been tapering off as I added more and more food to my diet as my throat healed (I had tonsil cancer). Now down to one Boost a day with morning coffee and a supplement with higher protein (Premier) later in the day. I hope this helps, tough road we trod.

Jump to this post

@tbveblen great info for those of us starting out. Thanks!

REPLY
Profile picture for weedman @weedman

I am two years plus after having head and neck squamous cell carcinoma with 35 lymph nodes removed of which 4 were pos. I also had 30 rounds of radiation. I have some stiffness in my neck and some shoulder pain. Overall I did quite well and continue to improve. I have had 2 PET scans and 2 CT scans and all have been negative. I have only positive things to say about what I have gone through. Best wishes to everyone. I am 77 years old.

Jump to this post

@weedman
Yeah!

REPLY
Profile picture for simplygrand @simplygrand

@tbveblen great info for those of us starting out. Thanks!

Jump to this post

@simplygrand I have been a member of this exclusive club for two and a half years now. Whenever I am asked how I am doing, I reply that today is a good day. I don't focus on tomorrow or the next year, just today. In that way I get the most out of each moment, minute, hour and day. I hope that you enjoy your moments today and always.

REPLY
Profile picture for Sue, Volunteer Mentor @sepdvm

@linda90 Hello and welcome to Connect. I wish I had good suggestions for you. I am 14 years past treatment and have had a few metastases during that time but currently clear for 4 years. I have not been able to regain the weight from pre-surgery. What has helped the most is exercise to build muscle, as I am now 72 and muscle atrophy is a real thing at this age. So stay active and do strength training with weights and elastic bands. I eat extra protein and extra small meals but it seems like my weight is stable. have you tried extra calories in nutrition shakes like Boost and Ensure or protein powder in a smoothie?

Jump to this post

@sepdvm I no longer eat very much (77 years old , 20 years from squamous cell throat cancer) so I supplement my diet with Huel Meal Replacement shakes. They don't have anywhere the sugar of Boost and Ensure, and they do have extra nutrients.

REPLY

The treatment of chemotherapy and radiation therapy I experienced was 23 years ago. When first diagnosed with stage 4 squamous cell tonsil cancer I was given the hope of living 1 year and possiblely 5. Here I am! 81 and counting! What's more positive than that? I've gone through a lot and have had to give up a lot of things because of the long term effects of radiation therapy. But, would I do it again. YES!

REPLY
Profile picture for omaest @omaest

The treatment of chemotherapy and radiation therapy I experienced was 23 years ago. When first diagnosed with stage 4 squamous cell tonsil cancer I was given the hope of living 1 year and possiblely 5. Here I am! 81 and counting! What's more positive than that? I've gone through a lot and have had to give up a lot of things because of the long term effects of radiation therapy. But, would I do it again. YES!

Jump to this post

@omaest

Congratulations! ....what a wonderful outcome! And you did it with 23-year-old technology which I have to believe has improved over time. Thank you for your story in the true spirit of the title of this thread:
"Stories of Success and treatments or activities that worked"

REPLY

I had cancer of the pyriform sinus in 2011. 35 radiation and 3 chemos. 5 months off of work and I had to eat through a feeding tube. BUT was pretty much back to normal after 7 months. Then got base of tongue tumor at the end of 2023. The wonderful doctor Van Abel used the robot (TORS) and cut it out. No radiation or chemo and, knock on wood, I am fine. I do have a few side effects (a LITTLE chocking at times when eating, left arm doesn’t work like it used to (due to the neck dissection), numbness where the neck dissection was performed. But really not too bad for having hpv cancer twice! Anyone reading this should know you can get through this and get back to normal! God’s speed everyone!!!

REPLY

I’m 3 years out from 7 weeks of chemo/radiation and while it was tough it was manageable. Keep up your protein and exercise. It’s a slow recovery but today it’s like I was never sick!!

I no longer even fret the check up scans or scopes! Godspeed!!

REPLY
Profile picture for bluechip33 @bluechip33

I’m 3 years out from 7 weeks of chemo/radiation and while it was tough it was manageable. Keep up your protein and exercise. It’s a slow recovery but today it’s like I was never sick!!

I no longer even fret the check up scans or scopes! Godspeed!!

Jump to this post

@bluechip33

Good for you bluechip! Thanks for sharing!!!!

REPLY
Please sign in or register to post a reply.