New Member

scoleh

https://csn.cancer.org/discussion/comment/1710385#Comment_1710385

Thank you, Russ. Yes, feeling blessed. Very fortunate. I will continue to document my case in the days and weeks ahead in order, hopefully, to provide useful information.

The effort you put into this message board is commendable, Russ. When an individual arrives here it’s because they have been hit with serious, life-changing adversity. They are looking for information. They are looking for safety and encouragement. They want to know what it’s like, if they going to be all right and what it’s going to take. You provide all that and it feels to me as if it’s become a calling for you. I love that and feel as if I’m being pulled in that direction as well.

wbcgaruss

scoleh, thanks for the kind words.

Anytime you can weigh in with some advice for someone is great.

It is always good to have more input, more input means more knowledge to help others with their situation and provide treatment knowledge, and emotional support and many people are down when they come on here and we gotta tell them and let them know there is hope, stay positive and fight on till victory.

NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

scoleh

Hello all. It's been a little while for me. Here is a catch-up post to document what's been going on.

Yesterday, Friday, Jan 5, I completed my 17th radiation treatment, on my way to 30 in total. My dosage is 200 Gy per treatment so doing the math, I have 3400 Gy in the bank with 2600 to go. I am receiving radiation therapy only, no chemo. I certainly feel for those required to do both. I have met people at the treatment center doing both and things are much more difficult for them than me.

On the weekend following the first week of treatments, I noticed that my sense of taste was shifting. No other noticeable symptoms. I could still taste and enjoy food, but the shift was apparent. That shift continued into the second week and now, after 3400 Gy, I can tell you that the sense of taste is gone, obliterated. Most things taste bad. Not sure what the word is, maybe bitter, maybe rancid, some say metallic but I don't really get that. I knew the loss of taste was coming but it's nevertheless depressing when it arrives full force. And it's made worse by the fact that my sense of smell is fully intact. Everything smells wonderful, but the taste is garbage. The best I can do is to find foods that taste like nothing, as opposed to bad. Rice has been the best solid food for me and yogurt-based fruit smoothies, fortified with protein powder have been working. Otherwise, I force things because I know the importance of maintaining as much body weight as possible. I started treatment at 186 lbs. and am down to 182, with the toughest period of time in front of me. My goal is to not drop below 170. No feeding tube at this point, by the way.

My NP has impressed upon me the importance of extreme oral hygiene throughout the process. Everything has been good on that side of things. Thickened saliva and dry mouth are coming but neither has been too bad thus far. Biotene is my friend as are routine salt water and baking soda rinse sessions. And I've been hydrating like crazy. My throat is sore due to inflammation, but no mouth sores or anything of that nature. I fulfilled a prescription yesterday for "Magic Mouthwash" in anticipation of needing it at some point. For now, however, it is in the fridge, unopened, ready to be deployed if and when needed.

I've been very lucky thus far. I'm told that taste should return to some degree but the timing with which it returns, and the degree, is variable. Could be weeks, could be months, so the battle to maintain body weight is likely to go on for some time.

I am praying for a Happy and Health New Year for all board members. Peace be with you all.

scoleh

wbcgaruss

Hello, scoleh, well you are a little over halfway done so at least that is behind you. I know where you are at with the no taste, it is so hard to eat when food has no taste or worse yet a bad taste. It's a struggle to force food through for a bit. So glad they stressed the importance of oral hygiene, which is so important going forward the rest of your life. Your taste will be back sometime after treatment is done. Thanks for the update, appreciated and a Happy New Year To you.

Wishing You The Best

Take Care, God Bless

Russ

scoleh

Good Evening. On January 24, I completed my 30th and final round of radiation, five rounds less than the standard protocol. I received a total of 6000 Gy on the right side of my neck and 5400 Gy on the left. Radiation was considered to be precautionary as a result of successful surgeries, small but clear margins, and no extra-nodal extension. I could have opted to forego radiation, and considered it given the side effects I learned about, but decided I wasn't the gambling type insofar as cancer is concerned.

My oncology caregivers more or less marveled at the degree to which I tolerated radiation. The worst side effect during the treatment period was the obliteration of my sense of taste. But I experienced very little in the way soreness or burns so I was able to eat throughout. From treatment one to treatment 30 I dropped eight pounds, going from 186 to 178.

The nine days since session 30 have been the most difficult. That won't come as a surprise to many of you, who know that radiation is the gift that keeps on giving. Symptoms in the post rad period have been a radiation burn on the outside of my neck, seriously thickened saliva, and mucositis. As a result of those flare-ups, I have lost an additional eight pounds and am now down to 170. I'm turning the corner on each of those, however, and for the first time today, I actually feel as if my taste is showing signs of recovering.

To anyone who is on a similar path with a similar diagnosis, there is surely hope. Having a strong care team that you develop confidence in is critical, obviously, and so too is remaining positive, steadfast and laser focused on getting better. Having a prayer team and/or strong personal support structure at your back is also huge.

Have a few follow ups scheduled and a PET that will take place approximately three months from now which will tell the tale.

Peace to All and God Bless,

scoleh

wbcgaruss

Scoleh, congrats on finishing treatment you are truly blessed. So glad you tolerated radiation so well that is great. Now for a little more recovery and you got this. Praying for clear scans ahead. I celebrate with you...

Wishing You The Best

Take Care, God Bless

Russ

scoleh

Thank you, Sir!