JUST DONT KNOW what to do.- Rads - Be here for us, please.

Scambuster said:

Troops shall rally
Clear,

You know you can ask away and the gang are here to help so no apologies needed.

I will outline what you ask Clear, rough maybe, but I got through. From all the cases, here, I think I was not hit the hardest but I was hit quite hard by Rads and I also had Erbitux, but I think it was the Rads that knocked me down, so hopefully this is a gauge of how bad it can be. I had 2 Rad session a day - 9am and 4pm Monday to Friday - so 70 rounds in total with IMRT. Had the Erbitux once a week. Maybe I was a light weight as my Onco doctor said on more than one occasion, "maybe you're just a 'bit' sensitive", because most people handled it much better than I did.

I went sort of OK for the first 2-3 weeks, but taste and texture of foods went bad in about week 2. Eating became difficult and I was losing 3kg a week. Pain got progressively worse in the mouth and throat and I was hurting pretty bad by week 3-4. I had to get a PEG in week 4. I was very weak by then, so you need to watch for secondary infections as her immune system will be compromised. Minimize unnecessary contact with crowds, touching public surfaces (germs) and definitely no visitors who are sick. I rarely saw my little girl as kids are prime bug carriers. Make sure you, your wife, and all medical staff working with her disinfect and use gloves. I had to fire one slack **** grubby nurse - had her banned from my room.

I ended up staying the remaining time in hospital from week 4 and was on IV fluids, and pain meds. I got a nebulizer each night to reduce the mucus. Seemed to help. Throat hurt and had mouth sores. I just had a large bottle of the salt/baking soda solution in the bathroom and swished many times each day. I found Biotene Mouthwash to be good for rinsing and also brushing and the toothpaste also.

Constipation was a big issue. I was given a few enemas and some liquid each day to keep things moving. This is due to 1. lack of movement, 2. reduced food intake, 3. dehydration, & 4 Pain medications like Morphine.

The IV was a pain as I was 'hooked up' so had to drag a stand when I got up for bathroom, feeds etc. They disconnected me when I went down for Rads. If needed, they usually use a port for cases like mine. I got one (PICC) but it failed. Feeding through the PEG was good and I added the L Glutamine to my feeds and also made a mixture of Manuka Honey, Sweet Apple Cider (1tsp) in warm water or green Tea. I actually sipped that when I could. Keep the voice and swallowing going. I used a plant based nutrition formula for the PEG feeds.

Towards the end of treatment, I had bad 'hot and cold' flushes and used ice packs on my face and head to cool down. I didn't get real bad skin burns from the rads so that was OK but I used Radiagel for a couple of weeks to ease any irritation.

I was in pretty poor shape Clear for several weeks after treatment finished and it was maybe 2 months till I felt human again. After 6 months, I was back at work so my climb out took 6 months. I hope that is as bad as you can expect.

As for after effects, my biggest gripe is the dry mouth from the destroyed Salivary glands. I have been taking 1 capsule of a mild pain med called Lyrica for the residual pain I had in my neck and shoulders. Not a big deal but it helped. You should ask about the Amifostime injections which are said to protect the salivary glands. i didn't get asked. I now take very good care of my teeth. I use a special mousse at night to protect the teeth.

As you know I take a bunch of nutritional supplements which i think has helped my recovery and assisted the battered body to repair itself.

As for things to watch out for, some people here have had bad throat strictures from the rads. I understand that some of these cases may be due to over radiating of the neck. Don't be afraid to ask the 'techies' or the Rad Onc to double check the calculations / Calibrations and even ask to get a print out of the data. That may ensure they sit up and pay close attention (not that they wouldn't but a little bit of insurance maybe). The mask your wife will get for the sessions it a bit unpleasant but doable. There are many earlier posts covering this. The Mask needs to be firm so the rads hit where they are supposed to. If there is movement, she should let them know. I lost weight during the 7 weeks so they made a new mask and re-calibrated for the last 2 weeks.

The other aspect you may encounter is her emotional state. I got through the treatment but crashed and burned 2 weeks after with severe depression. It was a rough time Clear, but as I said, both you and her can get through this. Take each day at a time, and do what you have to do for the day and then get up and do what you need to do the next day. Focus on the job at hand. Ask for help from family and friends when you need. The human spirit is an amazing thing Clear. Have faith. Best to you both.

Alway here,
Scam

sweetblood22 said:

Hi Clear.
I've been trying
Hi Clear.

I've been trying to pull some info for you, but with my weak Internet signal, and iPhone I'm not doing too well.

I did find Dr Arleen Auerbach's email tho. I only have Dr Kutlers cell phone number and her personal info so I couldn't give you that.
Dr Arleen Auerbach
the rockerfeller university
1230 York Avenue
NY NY 10065

auerbach@rockerfeller.edu

I remember when I was doing research I googled "dr Auerbach dr Kutler radiation fanconis anemia head and neck cancer" and was able to pull up some of their papers.

Also maybe the Fanconi Anemia A Handbook For Families and Their Physicians may be useful for you. It's on line as PDF or you can get a free copy thru Teresa Kennedy and Fanconi.org, I think.

As I said I'd get in touch with Dr Auerbach, as she and Dr Kutler are on the cutting edge of what HNC FA patients have had as far as rads are concerened. I know Dr Kutler has treated patients who have lived. I know the odds for us have sucked, but they continue to compile more and more data with time and that helps each patient have better odds.

I can't really add too much as to what the others have said above only that because of her FA her side effects may be more severe like mine were. You know you can email me anytime. Please get in touch with Dr Auerbach.

Hugs,

Dawn

Pam M said:

More Tips
Clear,
Lots of good info so far. I'd like to add the notion that the salt/soda/water rinse is a starting point. If your wife can handle more salt/soda in the water, increase the amounts. Never feel bad about asking questions. If any of us can help someone else be less lost than we were, it's a blessing to us. I was and am very glad I found this site early in my cancer journey. My suffering during treatment was not amazing (thank goodness) - for rads, the worst was the sore throat - even with that, I was able to swallow water the entire time. The worst of my mouth sores were from chemo, not rads. Remind her that the mask is not to pin her down, so the machine can hit her. The mask is to help her hold still, so the machine hits only the areas it needs to - it helped me to think of the mask as helping me, not imprisoning me. I also did happy thoughts and selected music to help me get through rad treatments. I tried a few times to do visualization (picturing rads killing cancer invaders), but I wasn't very good at it.

Mild products increase mucous. Lots of water intake reduces it (well, it doesn't really reduce it, but it thins it out).

I ran a humidifier in my room. I think it helped a lot.

I hope you all do well. Keep us updated.