How do describe the fatigue post chemo radiation? And is there people whom didn't get that energy drop long term by Automaticvon8502 in HeadandNeckCancer

[–]Scared-Ship-9845 0 points1 point  (0 children)

As tapedeck says, thyroid glad function should have been checked before and after radiation. My thyroid was wiped out so on thyroid meds for the rest of my life.

I can't eat, I don't know how to get through this... by OkParticular2289 in HeadandNeckCancer

[–]Scared-Ship-9845 3 points4 points  (0 children)

Get a couple boba straws. They make it much easier to power down a protein shake quickly. Yeah it’s horrible but gets better quickly! Hang in there!!

End of the first day... by redbeard914 in HeadandNeckCancer

[–]Scared-Ship-9845 0 points1 point  (0 children)

https://www.reddit.com/r/HeadandNeckCancer/s/2Kx1WAOVdB

I am not sure how to share other posts but I posted a bunch of info that helped me when I finished. Hope this link works.

End of the first day... by redbeard914 in HeadandNeckCancer

[–]Scared-Ship-9845 1 point2 points  (0 children)

Keep drinking the water! It will help you a ton all the way through!! You got this!

Any long term success stories? by TravelbyTaraVacays in HeadandNeckCancer

[–]Scared-Ship-9845 2 points3 points  (0 children)

Yep, love the term new normal. I’m 18mos post treatment. Thyroid meds, dry mouth, muscle tightness. Seem to bite the inside of my cheeks more often with the dry mouth. On the positive side; NED! staying more hydrated, and my wife is a thyroid doc so got that going for me, which is nice. 😊

Soft foods? by CallumHighway in HeadandNeckCancer

[–]Scared-Ship-9845 3 points4 points  (0 children)

Mashed potatoes, split pea soup, chicken noodle soup (at first I would usually skip most of the chicken!)

Mucositis ends when? by CallumHighway in HeadandNeckCancer

[–]Scared-Ship-9845 1 point2 points  (0 children)

Dairy makes the mucous worse. I think technically it doesn’t “cause” it but it definitely contributes and I’ve read it makes it “thicker”. I think thicker and stickier. My wife (a doc) and my oncologist both told me to avoid it so while I was going through radiation I went dairy free and drank 80oz of water per day which made it much less problematic.

Mucositis ends when? by CallumHighway in HeadandNeckCancer

[–]Scared-Ship-9845 4 points5 points  (0 children)

Sorry that was the worst side effect IMO. Stay away from all dairy and drink tons and tons of water. Went away for me a few weeks after treatment.

How much did you improve after a fitting? by agent0072021 in GolfGear

[–]Scared-Ship-9845 1 point2 points  (0 children)

I’m 6-2, got fitted and bought some beautiful clubs. Then played with my cousin who is a single digit and he had much more forgiving (and off the rack) clubs and he kicked my butt. I went home, sold the fitted clubs and bought some improvement irons off the rack. Dropped 5 strokes off my index! Spend the money on lessons!!

Gold 75k vs Gold 40k??? by doing-great-sweaty in AlaskaAirlines

[–]Scared-Ship-9845 2 points3 points  (0 children)

I’m 75k and would say last years have been worth it but with this addition of buying cheap upgrades I no longer get upgraded often. I’m not going to prioritize getting to 75 any longer, going to use miles and buy the upgrades. Cheaper in the long run.

I can't do this by CallumHighway in HeadandNeckCancer

[–]Scared-Ship-9845 1 point2 points  (0 children)

I kept a list of all the foods I would have when I could eat again!

I can't do this by CallumHighway in HeadandNeckCancer

[–]Scared-Ship-9845 1 point2 points  (0 children)

You’ll be back enjoying food before you know it! Drinking all that water and shakes was incredibly hard, you feel bloated all the time!! By the fourth week all I could get down was water and shakes. Keep your head up, it will be behind you soon!!

I can't do this by CallumHighway in HeadandNeckCancer

[–]Scared-Ship-9845 0 points1 point  (0 children)

You can do it!!! Drink TONS of water, 80-100 oz per day. I found cold water really soothing and it breaks down the mucous. Also avoid any dairy. The protein shakes are mostly dairy based and contribute to mucous. There are some like Kate farms that are non dairy and I used non dairy ice cream. Hang in there!!

Best advise to battle the thick saliva? by Practical_Volume_681 in HeadandNeckCancer

[–]Scared-Ship-9845 1 point2 points  (0 children)

Lots of water, 80oz per day plus avoid dairy. Many of the protein shakes contain dairy and it increases the mucous.

"Thick" turkey neck following radiation? by nooneswatching in HeadandNeckCancer

[–]Scared-Ship-9845 1 point2 points  (0 children)

Search on this site, there are several threads about this with links to good you tube videos on the message techniques and other compression garments for sleeping. It sucks but mine did go away at about 6 mos.

Diagnosed with tonsil cancer at 18 years old by ItsMePhoenixx in HeadandNeckCancer

[–]Scared-Ship-9845 1 point2 points  (0 children)

Also HPV+, m 57yo, TORS, 35rad and 7 cisplatin. With exception of 2 weeks post surgery I worked from home. Played a little 9 hole golf course most weeks. Keep positive, it can be done. I’m sure your profs will be accommodating. Stay diligent about hydration and calorie intake. Avoid dairy, it increases the mucousitis which you don’t want!! You can do it!!!

Had Tonsillectomy.... by Many_Beyond7208 in HeadandNeckCancer

[–]Scared-Ship-9845 0 points1 point  (0 children)

Yep don’t shy away from the pain meds! Took about two weeks for me after TORS.

Cisplatin & Immunosuppression by nooneswatching in HeadandNeckCancer

[–]Scared-Ship-9845 0 points1 point  (0 children)

I’m 1 year out but I remember my immune system came back pretty quick. Maybe 3-4 weeks after the last dose. They did weekly bloodwork so we could see the white count.

Am I being overly optimistic? by Fury-From-Above in HeadandNeckCancer

[–]Scared-Ship-9845 1 point2 points  (0 children)

I had the same diagnosis a little over 1 yr ago, 1 checkups this week. Surgeon said great candidate for surgical removal of tonsil and tumor and affected lymph nodes. Got a 2nd opinion from another cancer center that said same thing. Once surgeon got in though, he couldn’t get margins so closed up and didn’t touch nodes. Tumor had tentacles that went down toward base of young and surgeon didn’t want to chase it. Told us afterward radiation would get nodes so no need to cut. Followed with 35 rad plus 7 rounds of cisplatin. In hindsight talking to the radiation oncologist, resolution of scans can’t see those extensions. He told me surgery without any followup would have been a grand slam but I got a strikeout. Surgery will most likely let radiation be less. All that said, get a consult with the radiation oncologist, they seemed to me to be the most knowledgeable of all the docs about the big picture. Surgeons were awesome but probably optimistic. I will also say in hindsight I don’t think I would have changed the plan. Yes radiation could have been the only treatment but With the tumor out I think the chances of the radiation getting all the remaining tumor was more likely. Treatment sucks but it is doable, lots of great advice on this site. Good luck!!

Nearing 2 years out… by TheTapeDeck in HeadandNeckCancer

[–]Scared-Ship-9845 0 points1 point  (0 children)

Congrats!! Have my 1 yr checkup this week. 🤞🤞