Tumor left tonsil

Flyinhigh

My experience started a year ago with a lump on left side of neck with swelling.  A CT was done and subsequently referred to ENT.  Biopsy was negative but ENT treated with antibiotics and swelling went away but still a small lump and a very slight sore throat. ENT not satisfied and wanted a 6 months checkup. Another  scan and biopsy, this time was confirmed SCC/HPV with 2 lymph nodes affected Stage 4. Oncologist was very encouraged when he read HPV was the root cause and I was the 7th patient he was treating at the same time With same diagnosis. Immediate IMRT(40 sessions)and 3 super doses  Cisplatin(week 1, 4, 7).  I felt pretty good until week 4 Right after 2nd chemo.  The throat soreness and fatigue and nausea caught up to me.  Cannibus was very affective during the 4-5 days after chemo. At this point I had the metal taste, even water was hard to take. What worked for me was GNC 1340.  This is a protein/calorie mix, which each scoop(6-7 ounces) provides 670 calories.  Mixed with 16 oz whole milk is close to 1000 calories.  I chugged 3 of those per day for 6-7 weeks and supplemented at least one boost a day.  Nutritionist wanted 3000 calories and 120 grams protein a day. Was not easy but I did not want the feeding tube. I finished up last radiaton 20 NOV.  Radiation burns on my neck were very sore and we found the best treatment for that was Miaderm. Made for radiation burn treatment($35 a tube on Amazon).  A little expensive but worth it IMHO.  I thought once treatment was finished things would quickly start to turn around but I think the 2 weeks after were the sorest of all.  It is now about 4 weeks and I am feeling much better, have started eating some soups and soft foods, although there is no taste whatsoever.  Lack of saliva is a problem also but seems to be gradually improving. I was told to prepare to lose 15-20% of my body weight. Started at 215 ended at 202.  Still not much energy but I do notice very slight improvement. My other issue was I developed drop foot on left foot.  Wife is a PT and she did some research and this can be a result of the Cisplatin, nerve damage.  Using an electrical stimulation unit and hopefully this will improve as time goes on.  When I was diagnosed, I did a lot of reading and appreciated everyone’s posting their experiences and what worked for them.  Promised myself I would do the same and hope maybe my my experience will help someone deal with this unpleasant experience.  Have a CT scan next week and PET in Feb(3 months).  Hope there is a pot at the end of the rainbow.

CivilMatt

Welcome

Flyinhigh,

Welcome to the H&N forum, where flying high probably has its own charm.

You sound like a completely normal member.  You forgot to set your clock to “very slow” as virtually every one of us takes our time to get to the final or semi-final “New Normal”.

I had Erbitux and not a platinum based chemo, so my issues were mostly at the time of treatment.  There are many members who still feel the side effects from Cisplatin.  I hope your wife shocks you back to your old self, be it cancer free.

I wish you the best of luck moving forward.  There are some special foods out there waiting for your taste buds to meet them.  I have many food favorites now and while I drink lots of water, this too has improved.

Matt

grace2017

Thanks

Thanks for coming back and sharing your experience.  My husband is starting week 4 out of 7 and it is all starting to hit.  I'll check out the GNC powder, thanks for the tip on that.  Glad to hear you are on the recovery side.  It gives hope when you are in the midst of everything to know others made it through and are beginning to improve.  Blessings to you.

OKCnative

Sounds really similar to my

Sounds really similar to my experience. Like most, the docs tried this and that thinking it couldn't be cancer. Finally I switched ENT's and he went straight to needle biopsy and confirmed my fears.

I think most of us coast through the first 4-5 weeks. It almost makes you think "what were all these people whining about." Them BAM it hits you all at once. I was fortunate not to ever throw up. The only pain reliever I was offered was Hydrocodone - which did nothing for my throat pain - which was really the only pain I had. I did find that THC hard candies helped a lot. I credit them for keeping me from getting sick and for helping me fall asleep.

We were diligent at keeping my neck moisturized and I never suffered any ill effects to my skin.

I didn't get drop foot but I do now suffer from mild neuropathy in my legs and the bottoms of my feet will go numb every so often. I'm told it too was most likely chemo related nerve damage and will improve.

I also refused a feeding tube. That was probably the hardest part. For about two weeks eating (drinking) was an absolute nightmare that gave me anxiety all day long.

I dropped from about 195+ to 160. 3 months out I am intentionally maintaining at 165 (my ideal weight medically, for my age and height).

At about 6-8 weeks out I began eating whatever I wanted. It was kinda odd. I didn't start with soft foods only. It was either eat or don't eat.

I get my post treatment PET scan tomorrow. As of today, my current symptoms are; some fatigue late in the day, leg numbness on occasion, dry mouth (kept my salvia throughout until about 2 months post treatment - then 80% went away). Other than that, I'm pretty much back to normal.

Good luck on the rest of your adventure.

Flyinhigh

OKCnative said:

Sounds really similar to my

Sounds really similar to my experience. Like most, the docs tried this and that thinking it couldn't be cancer. Finally I switched ENT's and he went straight to needle biopsy and confirmed my fears.

I think most of us coast through the first 4-5 weeks. It almost makes you think "what were all these people whining about." Them BAM it hits you all at once. I was fortunate not to ever throw up. The only pain reliever I was offered was Hydrocodone - which did nothing for my throat pain - which was really the only pain I had. I did find that THC hard candies helped a lot. I credit them for keeping me from getting sick and for helping me fall asleep.

We were diligent at keeping my neck moisturized and I never suffered any ill effects to my skin.

I didn't get drop foot but I do now suffer from mild neuropathy in my legs and the bottoms of my feet will go numb every so often. I'm told it too was most likely chemo related nerve damage and will improve.

I also refused a feeding tube. That was probably the hardest part. For about two weeks eating (drinking) was an absolute nightmare that gave me anxiety all day long.

I dropped from about 195+ to 160. 3 months out I am intentionally maintaining at 165 (my ideal weight medically, for my age and height).

At about 6-8 weeks out I began eating whatever I wanted. It was kinda odd. I didn't start with soft foods only. It was either eat or don't eat.

I get my post treatment PET scan tomorrow. As of today, my current symptoms are; some fatigue late in the day, leg numbness on occasion, dry mouth (kept my salvia throughout until about 2 months post treatment - then 80% went away). Other than that, I'm pretty much back to normal.

Good luck on the rest of your adventure.

Thanks th

OKCnative thanks for the well wishes. Hope your PET was clear.  Had my CT yesterday but no results until after holidays.  At about 5 weeks post radiation, I also have fatigue that gets worse as day goes on.  Physically I can eat most anything but the dry mouth and lack of taste control what I consume.  I think both af these issues are slowly improving.  My one mistake was not treating the skin on my neck early enough and I ended up blistered.  Wish I would have started right away with the Miaderm.  Dropped foot slowly improving with the electric stim.  As many have said on this and other forums, we must hang in there and stay the course and things will get better.  I had read some of your earlier posts and they were very informative.  Thanks for posting and best of luck.