it is just heartwrenching at how severly burnt andy is. his skin just falls off. i dont know whats worse...the dry, flaky burnt skin on the top or the hot pink skin underneath. it looks horrible and painful. although he doesnt complain about the outside of the neck/face. he said his pain is coming from inside.
i read some other posts about aloe vera plants. my neighbor has a HUGE one, i am going to get some to put on his face/neck.

he was red and dry at the beginning of last week, but after completing his treatments (finally got thru all 5 in one week), it is bad.

he is still in alot of pain. he just got dialed up to 50 on fentynol (i know that is still low). but the prior week he was on 25 and it was managable. now, hes on the 50 and taking vicodin, and still in pain. he just put the 50 on earlier today about 2pm. has it had time to start working??

he isnt taking anything orally at this point. i do make him swallow several times a day though, so he doesnt lose that ability. he just looks at me like i am trying to hurt him by making him drink. i know its all for the best though.

he can barely talk. only a little whisper here and there. today, at the RO...she is normally so calm and cool and when she looked at his throat--i saw her eyes get huge and she looked worried.

i know we are going to get thru this, he is soo close to the end of treatment but geeezzzz...hurry up already....im gonna have a nervous breakdown! time seems to be at a standstill.

thanks for letting me ramble on...

Teresa:
Ramble all you like. Time and talk heals! I forgot that "Burn" until reading your post. I agree with Andy, the inside was more of a concern than the outside. My RO recommended Aquaphor sauve. It seemed thicker and more moist than vaseline and many other products we tried. Janet also used Aloe which provided a "Cooling" sensation. Most here also have an intimate relationship with lack of speech. Keep him swallowing but as far as speech I used computer and a wipe off board. My brother found us a website that actually spoke what you typed (Text to speech website). At that time it was a female AVATAR and voice but it was free and helped a lot so it didn't matter to me. It's very easy to close that mouth and shut down right now. Keep him swallowing, drinking, and talking as much as possible.
Best Wishes,
Steve

Hi Teresa,
I'm so sorry to hear that Andy is going through such a tough time. My skin didn't break down until the week after treatment and it went a deep crimson colour and peeled off. I was given an ointment called 'solugel' and then I had a waxy dressing over that and then a covering. This worked quite well but I found my daily shower a real challenge - that was when it really hurt.

I also pretty much stopped swallowing for a couple of weeks but am able to swallow water now with no real problem. You really do get to a point where it is pure torture to swallow anything, so don't be too hard on Andy if he is reluctant to to do it while he is at his worst.

I think that I spent about 3 weeks in a really dark place and I know that I barked at anyone (especially my husband who is also an Andy) who tried to push me to do things, especially when they might cause pain. I am still reluctant to swallow but I think it is more the memory of the pain, than the small amount that I now have.

I wish I had something that could make this easier for you both, but Andy does still have a way to go before he starts to feel better. Hang in there though because this time next month he will have emerged from that dark tunnel................

Good Luck
You're in my prayers

Sue

Hi Teresa, You and Andy are coming to the end of this rollercoaster ride but it's not over just yet. But keep that end in site. Your a wonderful caregiver getting Andy to swallow and caring for him so much. I can tell by your posts that he's your main concern and that everything you do is with his best interests at heart. Even if he gets cross with you when he comes back out of this tunnel he will appreciate the way you were there for him.

His neck sounds painful although his mouth sounds worse. Steve didn't get too bad on his neck. Once the darkness appeared on his skin our doctor gave us a script for some cream called silverzene. great stuff but leaves a dark mark on the skin (but washes off). We'd rub it on twice a day really thick. Steve's skin would just absorb it. It worked well and he never really complained about his neck being sore (although he is one of those males that doesn't complain). The inside of his mouth was ok until the last week and it appeared to get worse after his last chemo.

When Steve had trouble talking we used just note pads and pens. He used to carry them around in his pocket so he could write down what he wanted to say. Only problem is that pen and paper came out everywhere. Even while he was driving down an expressway doing 110km an hour. Very unnerving watching someone try to steer, hold pen, hold paper and also write and watch the traffic. Gave me a few grey hairs that day I tell you. We also had our own personal style of sign language which I'm sure you've developed that already.

Hang in there girl, Andy's a young fit man like Steve. You will both get through this. Come here as much as you want to, to vent. Trust me, I did and I couldn't have coped without it.

thinking of you both

Wendy

I spent the last 3 weeks of treatment with a homemade hood to cover evey inch from the sun when I left the house. Soaking in a tub to let the scabs come off my skin helped with the discomfort and stifness.
It was also about 3 weeks post treatment before I could speak above a whisper.

Re Flip,

I never got any scabs, even though I had open weeping wounds. The treatment I was given was designed to keep the wounds moist all the time. It healed really well, within a week or two with nothing apart from light pink skin to show for it when it healed over.

I think most wound/burn management treatment here is Australia is now based around keeping the wound moist while healing.

Sue

Teresa

I remember all too well my "Crispy Critter" days. None of the creams, lotions, etc helped anymore, but I finally got the doctors to write a prescription for VIGILON which my wife drove to a medical supply store to get as none of the pharmacies had it. It is a gel like dressing that you put into the refrigerator and when you put it on that burned crisp skin, the relief is palpable & immediate. I have had third degree burns that hurt less than the radiation which made all the skin on my face and neck just hang there in crisp little shreds. Only Vigilon worked because it soothed everything and hung there like a second skin so I could sleep. Plus when you change it, it takes off the dead skin and the new skin can grow easier.
Charm

we got given a vat of aqueous cream. i used to cake martin in it. it seemed to help a lot. he never got dry skin, he instead had moist burnt (somewhat smelly) skin. But when the skin fell off there was new pink skin underneath. he was also prescribed this gel type cream which was to act like a second skin (probably the same thing charm said), but he never needed it.
Oh we also had this very fine cottony gauze type scarf that wa disposable, and that we used to cover the skin and stop the clothes from rubbing.
I hope You find something to sooth Andy's skin.

Sue G, I agree with Australian dr's tending to keep the skin moist. The creme that they gave steve was very thick but would absorb well. Even though it absorbed it left a moist residue on his skin. His skin never got too bad and what burns he did have started to heal really well almost as soon as radiation finished. I think keeping it moist played a big part in that.

Be sure all cream is wiped off before a rad Tx.

I was told not to use creams for at least 4 hours before Radiation.

And my scabs were from me being stuborn and going outside unprotected and getting a sunburn. Even though the sun wasn't out much.

The beauty of Vigilon is there is no cream to wipe off. It also keeps the skin so moist. [quote]It is a hydrogel dressing that provides a moist environment conducive to wound healing and granulation tissue formation. It relieves pain from burning, itching, and soreness; absorbs wound exudate, odor, and bacteria; and does not adhere to tissue. It conforms readily to any wound configuration, cushions and protects the wound, and does not interfere with topical medications.[/quote]
I did not need it with the second round of CyberKnife radiation but it was a godsend for the first round when all the skin from my face and neck crisped up.
Charm

Teresa

Im sorry to hear about Steve suffering so much. Towards the ends of treatments, it gets very difficult.

Swallowing.... No matter how bad it gets, keep making him swallow. So far sounds like you are doing good with that.

Skin.....I used Beta Val cream, its prescription. Do NOT rub his skin when it is in such bad condition. When he is finished with his treatment, before you pull out of the parking lot, dab the cream on. Its ok if it isnt rubbed in, it will soak in. My neck was so raw that they had to bandage my neck before the mask could go on. The gel that Charms mentioned sounds like another great product, wish I had been able to use that too. Never put cream on before going into radiation.

Talking.....Alot of us doing radiation lost our ability to speak. I lost my voice for about 3 weeks---kids loved it. LOL

Pain patch..... 50 is nothing!!!! At the end, I went from 75, to 100, 125, then 150 within 2 weeks. If Steve is still uncomfortable 24 hours after an increase, tell the docs. He shouldnt have to rely on extra pain meds to feel ok. Pain management is a very important part of tx. It does not help a patient to be in pain.

How many more radiation treatments? Hope I was of some help to you.

he missed monday and tuesday but did 26th today. 14 more to go.

it is ironic that i was fully aware of all of the complications going into this...i just didnt realize that the complications would stall his treatment so much. he should have been in recovery by now.

note to self and newbies: NEVER EVER NEVER assume treatment will be done in exactly 8 weeks, it leaves u wide open for frustration and heartache.

andys IMRT is at 8am every morning. i only douse him with lotion afterwards and at night. im sure it has worn off by the a.m. but thanks for letting me know not to put it on him before treatment because as bad as it is...i probably would have started to.

he went from 25 to 50 on the fentynol but he cant tell any difference, is supplementing them with vicodin. still not doing its job. i will talk to the RO.

at this point, he is down 50lbs since treatment began. he still has 14 IMRT to go. im freaking a little about that. as u can see in the facebook pics, he was not a large man to begin with. it is so hard to see him wasting away right in front of my teary eyes...

Teresa

Losing that much weight is not good. He needs to up those calories right away!!! It will make him feel so much better immediately. Push for 3000 calories per day. At one point I was taking in 5000 calories per day and didnt gain an ounce.

we shoot for 3000 a day...maybe he does need more.

Teresa, a very wise woman said to me when I joined this forum " hold onto your hat because you are well and truly on this roller coaster ride". It's certainly a learning curve and this is where you learn to live one day at a time. We just concentrated on getting through what each day threw us, not what would happen tomorrow.

Also we were told to aim for 3000 calories a day as well for Steve's weight. Your nearly done, Andy will get there. You are both doing an amazing job.

Wendy

this is a frightening roller coaster and i am not amused...hopefully we are on the last slope. i think sometimes i just forget to breathe.
its a new day...lets do this!

You didn't say what time of day he is showering. There is supposed to be nothing on the neck or face during radiation so be certain to wash them both before going to treatment. You don't want the left over lotion on it from the previous night. I was told to use Dove or Olay soap only.

Take care,
Eileen

Martin told me say, with the aqueous cream it is essentail to put in on very liberally. At least 4 tablespoons full, to try and quantify it. I think this is the only reason he didn't fry, I absolutely smothered his neck every day 2 times a day. before bedtime and after radiation. I didnt wash it off, because it dried during the night and it seems it got absorbed by the skin. Martin insists, don't be afraid to put loads on. The skin became smelly and peeled terrible (moisturised dead skin i suppose), but it wasn't burned or scabby and the skin under was fine (like a baby's bum he just said).

Martin wants to say, he lost 35 pounds and weighed as much as me (and i am a lot shorter and not fat). But it comes back slowly, he still weighs a lot less than before, but he is a healthy weight if a bit thin. Persist with the feeding, you don't want him to lose more. It will come back when he is recovering properly from the treatment and can start eating. Good luck.