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

Clearblue
Posts: 188
Joined: Apr 2010

Friends,

For the last few months i have followed your posts with awe and have had the priviledge to communicate personaly with some of you through csn email.

It looks as though my wife (who has Fanconi Amemia) is heading towards Radiation (med recommendtion despite FA disposition.{last medical resort to stop recent neck recuurences}.She feels the best she has felt for ages. Its like being sentenced to the chair.

I am trying to be ahead of our enco meeting tomorrow by reading up on side effects youve all triumphed and suffered and the remedies you attempted but I am flooded by what i need to know and what i dont know.

If anyone can reconstruct the major "rad effect treatments care etc that worked for you, or warnings etc , please please let me know.

I'm trying to categorise side effects and more importantly how you dealt with these. I am alone with this. Our enco has gone straight from loss of eating ability to death! BUT he leaves the as void "the daily in-between".I understand that in the end the outcome is important. But the daily, weekly, monthly nightmare & management is what read is wretched and i feel this is what i need most to be prepared. Im so frustrated. I dont know how i am going to manage all of this.

What were your "top"(sic) major effects to be treated and what treatments worked best(relatively):

Mouth sores:, ulcers.(Many posts talk of biotene, l-glutamine & magic mouthwashes (though i see there are many combinations prescribed by docs)
Teeth Decay pre care: fluoride traysfro
Skin: Aquafore etc
etc
etc

Also what quests should we ask the encologist?

oh Lord, Im sure i sound like i have it all wrong. I apologise for being so tiresome.If anyone wants to rap me over the knuckles or bash me back on track, feel free to do so.

If none of this makes sense, Maybe just suggest a way i should go about getting prepared
and i will try ask more specifc quests in time.
Be here for us.

Wishing you all the absolute best and well.
Sincerely
Clear

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Hi Clearblue,
I am sorry to hear that your wife is facing radiation when she is feeling so well. Side effects of radiation can vary depending on the size of the area being radiated and the intensity of the radiation. Also remember, many here have had chemo with raidiation, so side effects are compounded by that fact. Below are some things that I can remember about what Helped Mark as he went through 6 weeks of radiation (chemo too).
My best to your wife and you.
Things to know for radiation treatment:
Drink lots of fluids. 60ml is the recommended amount.
Drink calories…not just water: Gatorade, vitamin water, shakes.
L-glutamine- a spoonful full 2-3 times a day mixed with anything.
Salt/baking soda mouth rinse. (Mix 1/2t salt, 1/2t baking soda, with 1 liter of water. Rinse and gargle as often as possible. (soothes sores, and clears mucus)
Topical lidocaine for mouth sores.
Pure aloe for the skin. Make sure it is 100% aloe…some has alcohol in it… don’t get that.
Aquafore for the skin: slimey but very soothing.
Pain meds: can vary depending on level of pain. (Neurontin, dilauded…)
Biotene tooth paste…doesn’t burn.
Floride trays for teeth…lack of saliva damages teeth.
Fluconazole for thrush.
Prilosec if there is heart burn.
Stay on top of constipation. Some pain meds cause constipation (Senekot)
Also Mark was given a witch hazel-type solution when the external burns were pretty bad. He would soak a cloth and put it on the burn like a compress. Very soothing.
Keep swallowing.

Stay on board for support. Many good answeres here.
Kim

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

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 ass 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's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

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

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

The specifics of my rads were 200 CGY per day. 6,000 total dose with 5000 regular and 1,000 neck boost. I had IMRT radiation.

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

The specifics of my rads were 200 CGY per day. 6,000 total dose with 5000 regular and 1,000 neck boost. I had IMRT radiation.

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

My biggest problem was swallowing so I had a feeding tube for about 8 months. I also was prescribed magic mouthwash which helped soothe my mouth a little. Keep the skin that is getting the radiation moisterized. I also drank aloe vera juice which is disgusting, but you could ask the doctors the benefit of that. I loved having the feeding tube because I was always hydrated, I fought getting it for a while and felt miserable because I was always dehydrated because swallowing hurt too much. I had my treatments 10 years ago, I think radiation is better now because it is more accurate. My thoughts and prayers go out to your family and I wish there was more I could do. Just keep positive and also take care of her teeth and get plenty of rest.
Best wishes,
Linda

Hondo's picture
Hondo
Posts: 6112
Joined: Apr 2009

It has been so long that I went through the Rad treatment I really don’t remember all the side affects. I only know what livings with the side affects are like now and the new side affects that come every year. I know Sweet had the same problems as your wife does with FA so some good advice there. Kim and Scam also make a lot of good points in what they are saying and went through. I wish you and the wife the best and will keep both of you in prayer. Also I am just learning about a machine called a Violet Ray that is supposed to help the bodies electrical system restore its balance, it might be something good for your wife after treatment is finish. I have ordered one of them and hope to start using it in a few weeks, will let you know how it works.

All the best to you both

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

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.

Hondo's picture
Hondo
Posts: 6112
Joined: Apr 2009

My Wife found a cold water humidifier that worked great for me at night, it was a big help

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