Still fighting the good fight

D Lewis

Hi, All;

Been a while since I've posted. As you may recall, I started an eight-week treatment regime on March 15 for Base of Tongue SCC, with mets to lymph nodes on both sides.

So far, I've done five of my eight weeks of radiation and two of my three cisplatin chemo treatments. On Monday, they temporarily stopped my radiation treatments owing to severe skin burns to my neck. From my earlobes to my collarbone I was as red as a brick and peeling, and they said if I didn't take a break, I would shortly have third degree burns. So, I've been sitting at home with my feet up, slathering on the Biofine emulsion, and praying that they will let me begin again next Monday. I don't want to lose any more time.

I started treatment without the PEG, at my oncologist's recommendation. Ha! Based on what I've read here, I should have argued for it at the start. I had the PEG installed after week 4 of my treatment. I dropped a fast 15 pounds during the first four weeks, and now my weight has stabilized and is going back up. I'm using the pump to slow feed overnight, and do two more feedings during the day and it has been a real life saver. I am still able to swallow, it just became too much to choke down enough of the thick shakes with the mucositis.

Hair has thinned, and I have the radiation racing stripes of hairloss up the back of my neck. I may yet lose more, I can't tell.

I have followed up on every recommendation here with regard to medications, mouth rinses, lotions and supplements and my doctors have been willing to write prescriptions for them all. I have more medications than I can use on a daily basis, but they are there if I need them. I'm not suffering severe discomfort. I'm getting enough sleep (hey, I was a light sleeper anyway). Perhaps this short break will make me stronger and more able to face the last 13 radiation treatments and the last cisplatin.

I am anxious, but determined to get through this. Sometimes I feel like I am walking a very steep and narrow path, with a very heavy weight on my back. I am afraid to look away from my own feet for fear I will fall off the path. So, forgive me if I have been out of touch. I've just been afraid to look up and say "Hi."

Before I started this journey, my daughter brought me a collection of really high quality loose teas, both green and red, and tea bags. I've been drinking the tea daily, weakly brewed and cooled, or diluted over ice. I'm convinced that the anti-oxidants and other good things in the tea, and the regular swallowing, are the reasons my throat is doing as well as it is. And, it does help to thin the mucous. So, that is my advice, to add to all the other good advice available on this board.

Thank you all for your support and advice on this journey. I could not have done this without all of you.

Deb

Skiffin16

Keep on Fighting
Keep on fighting you're almost there....

John

Kent Cass

Skiffin16 said:

Keep on Fighting
Keep on fighting you're almost there....

John

Deb
Your presence was missed. Anything more specific from your Oncos team? Being of that institution, they should be top-line.

Hate to say I told you so, about the PEG/feeding tube, but...Hope things stay okay, and the worst of it is over for you. Please keep us informed, Deb. It is one very rough road, and we are ALL concerned about you. And, Deb, continue to

Believe

kcass

Hondo

Kent Cass said:

Deb
Your presence was missed. Anything more specific from your Oncos team? Being of that institution, they should be top-line.

Hate to say I told you so, about the PEG/feeding tube, but...Hope things stay okay, and the worst of it is over for you. Please keep us informed, Deb. It is one very rough road, and we are ALL concerned about you. And, Deb, continue to

Believe

kcass

Hi Deb

Like John and Kent is saying keep up the fight and keep us posted, we are praying for you.

Scambuster

Great Expectationa
Hi Deb,

Good to hear from you and that you are doing OK despite the ordeal. Not wanting to be a spoil sport, but I wanted to add that it might get rougher for the next week or even two but you are aware of that. More importantly is that you may feel really bad once treatment has stopped. I thought 'yahoo it's over', and then I got worse, much worse, and it did my head in. I hadn't found these pages with all the good souls to help me through> I went solo and no one warned me that it could be rough so I had expectations that I would start to recover and feel better which wasn't the case. Just to warn you to be conservative in what you expect.

Other than that I am curious what kind of supplements you are using. I wasn't able to take a lot of stuff in case it interfered with the treatment and then physically couldn't take anything till my throat recovered enough. I do think taking the barage of supplements now has and is helping my health and continued recovery. Let us know when you feel up to it.

Keep up the fight Deb, you will come out the other side and get to be pretty much normal again and it is good.

Cheers
Scambuster

Pam M

Sorry About the Hold Up
Deb,

Thanks for updating us. Sorry to hear your burns are so bad. I'm guessing the wait is worse than the pain for you. I know the delay is frustrating. Here's hoping you've healed enough to resume rads on Monday. Keep at it. I'm just over a month out now, and I ate a few bites of well-done steak tonight(I will wait a while before I try that again, though). Mucous is MUCH better. I have some saliva. I haven't done a PEG feeding for four days.

Your drive has gotten you this far - it'll take you through. Just asked the big guy to give you a boost.

Do well,

Pam

rmkbrad

Keep up the fight
Deb,

We started the same day, I have 4 rads left to my neck, and my neck is red with one crack. So far the nasea has been my most troublesome problem. I have lost 28 pounds so far, I still have 25 rads left to do on my esophagus. I have had 5 carboplatin chemo treatments so far and they are talking of extending them to go with my esophagus treatment, oh yea. I hope this pain and suffering we all go through really helps in the end. Keep up the faith the fight and god bless.

Brad

staceya

Scambuster said:

Great Expectationa
Hi Deb,

Good to hear from you and that you are doing OK despite the ordeal. Not wanting to be a spoil sport, but I wanted to add that it might get rougher for the next week or even two but you are aware of that. More importantly is that you may feel really bad once treatment has stopped. I thought 'yahoo it's over', and then I got worse, much worse, and it did my head in. I hadn't found these pages with all the good souls to help me through> I went solo and no one warned me that it could be rough so I had expectations that I would start to recover and feel better which wasn't the case. Just to warn you to be conservative in what you expect.

Other than that I am curious what kind of supplements you are using. I wasn't able to take a lot of stuff in case it interfered with the treatment and then physically couldn't take anything till my throat recovered enough. I do think taking the barage of supplements now has and is helping my health and continued recovery. Let us know when you feel up to it.

Keep up the fight Deb, you will come out the other side and get to be pretty much normal again and it is good.

Cheers
Scambuster

Thanks for saying things
Thanks for saying things could get worse. I am doing worse than I was a month ago, when rads stopped. My throat seems to get sorer each day and I am taking in less and less and getting colder and more light headed every day. I need to get an electric sweater to wear. I am not sure what is wrong and how to fix it. I had gained 5 pounds but am not back to my lowest weight. When do you think it gets better?
Stacey

Kent Cass

rmkbrad said:

Keep up the fight
Deb,

We started the same day, I have 4 rads left to my neck, and my neck is red with one crack. So far the nasea has been my most troublesome problem. I have lost 28 pounds so far, I still have 25 rads left to do on my esophagus. I have had 5 carboplatin chemo treatments so far and they are talking of extending them to go with my esophagus treatment, oh yea. I hope this pain and suffering we all go through really helps in the end. Keep up the faith the fight and god bless.

Brad

Stacey- the cold you feel
Happened to me, post-treatment, also. Some, and I am one, think it's a Thyroid issue. My Rad Dr. ran a blood test, due to it, but it came back good enough. She did, however, say the cold I felt was likely the due to what's going-on with the Thyroid gland.

The best to you- and happy you are where you are.

kcass

stevenl

WHAT'S UP?
Hey there MS DEB,

Strange how you make reference to "Brick" as the color of choice. You know there are white brick,
pink brick actually almost all colors have been made into brick. Could this be an actual underlying,
hatred of brick? Maybe it's just bricklayers, what do you think?

No matter where the seed of hatred lies, I, still hope the best for your well being and speedy recovery. I also hope for and pray for healing for your neck, wishing it would become ROSY pink or cool PEACH.

Sorry kiddo, just absolutely could not resist. I researched Biofine before I started all this mess and it is first line treatment for burns, really really goooood stuff.

I am doing the night feedings also. What a lifesaver this peg has been for me. Am actually gaining weight a little now. I truly hope the best for you D, and I hope you will be well enough to continue treatment. Wow 13, just a few days ago you thought you would never get there huh? Stay tough and beat this crap.

Steve,
AKA BRICKlayer

fbcuthguy

Keep Fighting!
I am a week out of rads and I, too, had to take a break because of burns. I really think that week was a Godsend because I was much more equipped to handle the last 13 treatments. The amazing thing is that you would barely know I had radiation if you looked at my neck today!

All the things we have heard on this board are holding true for me as well. I am dealing with the mucous, the dry moth, the difficulty swallowing, weakness, etc. But- I AM DONE WITH RADS! Nighttime pump feedings carry me through as well. The PEG has been a lifesaver!

Keep fighting the good fight. The light at the end of the tunnel isn't a train after all!

You're in our prayers.

Rob

Hal61

Setbacks seem normal
Hi Deb, thanks for the post on your progress. The more I read the more it seems that setbacks are typical and come in several shades. I ran out of juice after my last chemo treatment and ended up in the hospital for a couple of days to hydrate. Many others, like yourself, have a bigger skin reaction to the rads. Any and all of which are trying when you just want to finish the treatment. You're on the swithchbacks now, just keep taking the required steps, stay on the trail, and you'll make it. You're doing a great job, and I think of you and send good thoughts your way.

Hal61