Richard is over the "hump"! We have 2 more chemo treatments and a little over 2 weeks of radiation left.

He is bearing up.

He is unable to eat via mouth, so the PEG has been a blessing. He has lost about 10 pounds since the beginning of treatment, but is maintaining (so far) his weight. 6 boxes of Nutrin a day (3000 calories) and 64 oz of Smart Water. We have added a couple spoonfuls of optifiber to the mix (for constipation). He still gets his coffee, 2 cups, in the morning (via PEG) as he gets migraines without caffeine.

One thing that someone (an RN friend) suggested and is working for Richard is that water be given before the feeding (about 20 minutes), not after. We are mixing the water with X-strength Tylenol (crushed, with approval from his oncologist) to manage the pain. So far, this has been enough and works well for Richard.

We have to be careful, to keep on schedule in the evenings, as otherwise, he has severe heartburn, that causes him to vomit gastric acid.

We are tracking his treatments with a visual, sticky note chart, taped to the wall - kiddish, but it does feel good to pull a square off and toss with each treatment.

The lymph node tumor is visibly diminished and Richard feels like his radiation mask is not as snug as in the beginning, hopefully this is a good sign.

His spirits and attitude are so positive. He is still able to work, despite the discomfort and I hope this continues, as it gives him something other than the cancer, to think about.

Sorry for the long post. Richard and I do not talk a whole lot about this. Thank you for being my "outlet" and encouragement.

Barbara (CG)
Richard (landscaper/surfer/in the midst of the OC battle)

The mask feels less tight most likely due to the weight loss.

Unfortunately he is nearing the worst part of the Tx but do keep this positive attitude as each of us can react differently so let's hope he's one of the lucky few.

Calorie intake is super but make sure he gets plenty of water as well.

Barbara, if the face moves in the mask ask them to refit a new one. Don't accept movement. Especially during the spinal block part. It should be standard protocol everywhere. Keep the cumulative Tylenol around 2500 mg or less a day as the liver is already battling chemo and toxicity of rads.

Sounds like things are going pretty good.

Ed

Great job with the calories and fluid intake! This is usually the most challenging part of all of the treatment process. Most patients cant take in enough and end up struggling. Looks like he is right where he needs to be with his intake. Dont forget if needed he can ask the doc for a prescription for hydration in the chemo lab. By getting a couple bags of IV fluids, he will immediately feel better.

Unfortunately things get progressively more difficult as treatments continue. Keeping up the nutrition and hydration levels of what he is taking in currently may become tricky. He sounds like he is doing very well if he is able to manage his pain with only using tylenol. If that begins to not be enough make sure to speak up right away and get something stronger. Pain will make this so much more difficult to get thru the radiation treatments.

Keep up the good work. Never forget we are here for you too. Caregivers are like angels. They have so much depending on them and no matter how tough it gets, they still somehow manage to have a smile on their faces. We will be here to lean on if you need to. Try to take some time just for yourself once in a while. If you get burned out who will handle everything? So be kind to yourself whenever you can.

Richard is 10 days away from completing the radiation and only one more visit for chemo.

He is still working, taking in the recommended calories/water (by PEG). His throat is not as sore as it was 2 weeks ago.

However, the external skin around his neck down to the collarbone is badly burned from the radiation. He has trouble turning his head. Initially, he was applying aloe and that seemed to help some. The RO recommended Hydrocortisone 1% Plus, with Aloe. It has given him some relief.

The question that I have is with this severe burn, will there be a possibility of a long-term issues to the skin, after treatment is over? Is this normal?

They are now doing targeted radiation to the tumors for Richard.

Thanks for your experiences/wisdom on this.

Barbara (CG)

This is gonna sound crazy but I put Willard's water in a spray bottle and sprayed it on my neck and my bald head (cuz it felt good). My skin healed very well including a post-tx lymph node removal.


I am in NO way affiliated with these guys. But what happened is what happened.

Thank you, Chris.
I took a look at the link and it seemed that the main ingredient was Aloe, which is what Richard's RO is recommending to put on his skin.
Hopefully, this burn will heal up quickly.
Aloha,
Barbara (cg)

There are many different creams to use for the radiation burns. Always pat the cream on the skin and let it soak in, never rub it in. Never apply cream prior to doing radiation treatments. Ask for a stronger prescription cream like Beta-Val or even use over the counter Aquaphor cream.

The skin on my neck was open weeping sores from radiation. It looked terrible but with using the cream several times per day and never immediately before rads, it did heel completely. I cant believe my neck was not full of scars but it did return to its former smoothness.

With care Im sure your husband's neck will be ok. If it has open, weeping sores, after patting on the cream, place a small piece of gauze on top, dont tape it on just let it sit there to help keep it clean.

Best wishes!

Barbara, for what it's worth, about half way through radiation, we switched from radioplex to regular Neosporin after every rad treatment...based on the advice of some of the other U of C patients. As soon as he was done with each rad, I'd put vislon burn pads (6) all around his cheeks, face & neck, wrapping in gauze to keep them in place, and he'd take a nap for around an hour. Then I'd slather him in Neosporin. I believe it helped a lot, Vince's skin never did break down, although during the last week, in the crease of his neck, it was paper thin. One point, no matter what you're putting on your husband's skin, be sure it's dry for each rad treatment. Best of luck...you're almost through it, Ana

There are two common medicines for the neck burn from radiation. One is Aquaphor which is applied first. If the burns get into open wounds then silver silvadene works wonders. best, don

I used Aquaphor and it did a great job for me.

In answer to the question I suppose there can be some long term damage related to the burns depending on his complexion and severity, but skin usually heals quickly and it takes a 2nd degree burn to do serious damage so it should heal okay and in a relatively short period of time - ever had a really bad sunburn? Kinda like that hugs. Oh and as many said there are many different kinds of creams - I used Glaxal base - totally awesome and non greasy - but I don't think you can buy it in the states. I am olive skinned and only tanned... So I had a tan from my nose down to my collar bone! no blistering or anything. Take care