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Joined: Dec 2012
Posts: 6
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OP Offline
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Joined: Dec 2012
Posts: 6
Ok, So we are on the 4th week of radiation. He is doing really well. So well in fact, that I thought I would share what has been working for him.

He has had issues previously with an enlarged uvula, strange but, true. It gets enlarged and swollen to where it can be difficult to breathe (especially with the mask) and also has some congestion. Because of this he has been taking daily mucinex since the start of radiation. He also takes daily zyrtek-D and flonase. Breathing has been much better.

During the 2nd week of treatment which includes weekly chemo, he was getting some mouth sores and very sore throat, was also fatigued. Last week was probably the worst so far. I looked inside of his mouth and it was spotted with white on the roof and back of his mouth. He was very good at using the Nystatin and magic mouthwash and it seemed to help but, he talked to a doctor friend of his who uses a lot of homeopathic remedies and he mentioned Sea Buckthorn berry oil and Aloe vera juice. Neither are very appealing to drink, let alone swish around in your mouth but, according to him nothing tastes good and it is tolerable. He does the Buckthorn oil in hot or warm water, just enough for a mouthful with a dropper of oil. Drink and swish around then swallow. A little after that take the aloe vera juice about 2 ounces and mix with a little water and do the same thing. Since he started this regimin 3-4 times a day, his mouth sores are almost all gone and he is still eating oatmeal and ensure. Just to see if he could, he ate a burger and fries tonight. It tasted awful but, he felt he should finish it as excercise! I know we still have a long way to go but, the doctor is amazed how well he is doing.

He also started the Biafine ointment on his face and neck 3 times a day during the 2nd week and he doesn't have any burns at all. I actually used it when I burned my hand cooking and it took away the radiating burning feeling after putting it on twice. Pretty incredible stuff.

I know that everyone is different and I am so thankful that he is doing so well. I just hope to share this so that maybe other people can get some relief also. It's a scary road but, the key is to stay in front of your symptoms. Stay hydrated, get your calories and use this stuff!!!

He is also still getting excercise everyday. Even when he doesn't want to!

Thanks for listening!


Caregiver to boyfriend
Diagnosed 10/12
stage 4, SCC Left Lymphnode Unknown primary
most likely in the left tonsil
HPV+, non-smoker, social drinker
No surgery, 1 week on 2 weeks off chemo, 5fu, cisplatinum and taxotere completed 12/22/12
PET 1/13 clean
starting radiation 1/22/13 - 8 weeks with weekly chemo
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
At this point, the treatments are just beginning to get a bit difficult. Unfortunately as time goes on they will get progressively harder with more mouth sores and fatigue. The very best thing to help is push good nutrition and hydration. Every single day a minimum of 2500 calories and 48 oz of water are mandatory. If you can get him to take in more than that its much better! Together, you can get thru this. You sound like a wonderful caring caregiver who is right there helping your boyfriend to get thru this.

As far as other remedies are concerned, please check every single thing past your boyfriends oncologists before using. Battling cancer is a whole 'nother ballgame and not like anything else. What works for a normal patient or situation may be harmful to your boyfriend at this time. While I am not discounting the helpfulness of other remedies, I am advising the use of extreme caution with them. If it has not been scientifically proven with clinical studies to be effective then use caution and be skeptical. Some things can interfere with the effectiveness of radiation and chemo, even some innocent vitamins can become harmful during treatments so please be careful.

As far as eating goes, he should be pushing himself every single day to continue to eat and drink as normally as possible. While many foods may not be doable, there are many that are. He does not want to lose his ability to swallow which can happen. Relearning to swallow is not an easy road and some patients can have life long problems if they dont keep using those swallowing muscles every single day. When times get tough, even drinking a glass of water can be torture but it must be done. Check with the doc about a prescription for magic mouthwash to help numb the mouth while he eats to make it easier. Taste is just something that he will have to deal with, foods wont taste the same for a while. I found many surprises when I was going thru rads, what I thought would be delicious tasted like burnt garbage. EWWW!!!! Here is a list of easy to eat foods, this can help him with his eating.

Easy to Eat Foods

Dont forget as a caregiver you need time for you too. Caregivers have such a difficult job and often they forget to watch out for their own needs. Take a few minutes a day just to clear your head. Keep up the good work!!!

Wishing you both all the best!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Dec 2012
Posts: 6
Member
OP Offline
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Joined: Dec 2012
Posts: 6
We absolutely run everything by our doctors and dieticians. I just wanted to give people a positive story instead of negative. With the help of different products, especially the Biafine Ointment (which I found on this site and is by prescription)you can make it through a little better. We started it the 1st week of radiation and he doesn't have any burns on his skin. He has plenty of pain in his throat but, the sores are really limited to the back of his mouth. I feel very strongly that it is from the aloe vera juice (make sure it has muco polysachirides)and the sea buckthorn berry oil. He uses the magic mouthwash and nystatin also throughout the day and night.

He eats everything by mouth even though he has a PEG. He rides his bike everyday. He eats and drinks and keeps track of it everyday. It's basically oatmeal and ensure but, he is doing it up to 2500 calories a day.

He has bad days and I'm not trying to downplay it but, in comparison he is doing much better than other patients that we've seen and spoken to. I feel that staying positive is the best way to fight. Don't give up and don't just exist.


Caregiver to boyfriend
Diagnosed 10/12
stage 4, SCC Left Lymphnode Unknown primary
most likely in the left tonsil
HPV+, non-smoker, social drinker
No surgery, 1 week on 2 weeks off chemo, 5fu, cisplatinum and taxotere completed 12/22/12
PET 1/13 clean
starting radiation 1/22/13 - 8 weeks with weekly chemo

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