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#163282 03-27-2013 03:40 PM
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Hello, all. I went by to see my Dad today and I feel so bad for him. He has 21 more radiations to go and is a little over halfway through. Today, he was saying his neck felt hot and wanted an ice pack to put on it. This is the first time he has complained about this--is this normal? I assume now that he has hit the halfway mark, the effects will really be hitting him fast and hard. He is coughing up a lot of mucous stuff, also and is having difficulty talking. I just want to hear this is all normal and he will get back to normal again. I feel like you have to go through hell and back before starting to recover.


Brandi, daughter of:
Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+
1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!!
2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total)
4/25/2013: Will be last day of TX, both chemo and RT
shannette22 #163295 03-27-2013 07:01 PM
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Hi Brandi,
My husband's neck and mouth burned badly enough that they suspended his treatment after his 26th dose of radiation on March 20. They plan on resuming treatment on April 1st. His neck actually blistered up in 2 large areas. His skin might be more sensitive than most due to incurring severe burns to 53% of his body 19 years ago. About 4 weeks in Jeff started having the same problems as your dad, including the mucus and difficulty swallowing and speaking. The doctors had warned us that this would happen and that it's absolutely normal. They're treating aggressively to make sure they get it all. Your dads treatment sounds very similar to my husbands and I know how hard it is to see. Hang in there!


Laurie- CG to husband Jeff age 50: Stage III floor of mouth/BOT T3N1M0
Dx -1/18/13 Full dental extraction-1/24/13 1st PEG-1/30/13
2nd PEG-2/9/13 Tx start-2/13/13 weekly carboplatin/taxol and IMRT -
3rd PEG-2/15/13
shannette22 #163301 03-27-2013 07:55 PM
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Finding a really good cream usually helps but not always. And Laurie Anne that's very likely why he's having issues - now with radiation. Also if you are fair skinned it gets you worse. smile hugs to both of you


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
shannette22 #163305 03-27-2013 08:21 PM
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Hi Shannette,

Yes, it is all normal. So many of the complaints around radiation treatment relate to what you are describing.

Your Dad may never go back exactly the way he was, but will adapt over time to a new way of doing things as we all do. Sometimes the saliva doesn't return exactly as it was and more water with meals or more gravy than usual to help the food go down might be the answer.

Your Dad may have a bit of a slur in his speech which will improve over time, but will need practice and patience.

He might also struggle to swallow properly for a while and might need help with swallowing exercises from a speech pathologist.

He might also sail through everything, have his saliva return to almost normal, return to eating and drinking as soon as the pain from ulcers goes away and be the only person that even notices any changes to his speech.

Recovery can be a long time. However, it sounds like your Dad is lucky to have the understanding and support of people around him which he can rely on when the issues arise.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
shannette22 #163339 03-28-2013 12:45 PM
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Posts: 46
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Sounds to me like this is a fairly normal reaction in terms of what I've read and experienced.
With my own first dose of RT I also had 6 weeks of chemo. I felt that the excess mucous in my badly ulcerated mouth and burnt throat were the worst of the side effects. I would say that these peaked about 4 weeks after treatment had finished. It certainly wasn't easy but I did get through it.
My speech was affected and my skin did break down (like bad sunburn). However, about 2 months after treatment had finished I slowly began to eat solid food again.After 3 months, my eating was almost normal and my speech much improved. I know that this sounds like a long time, but I just took it one day at a time as the cliche goes.
So. . I hope it all goes well. It is tough. . very tough, but doable and a new normality is certainly possible.


50 yrs.Non smok.Mod drink.
Tongue canc SCC T2N0M0.
Surg. Jul '11 1/3 rd of tongue rem. & sel. neck diss.PEG fitted.
Aug '11 6 wks chemo/radio.3 more canc. nodes rem.
Feb '12 18 wks chemo.
Nov. '12 Mod rad neck diss on right, & pec flap rep. rem. of tumour under chin. More rad to follow in 2013.
**update** Passed away September 26, 2013
shannette22 #163341 03-28-2013 12:59 PM
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We had amazing success with a generic prescription for Biafine. It's called Prutect. Specifically this particular cream. He got a different brand once and it was completely different. My boyfriends neck stayed really good up until the very end. He put it on 3-4 times a day. Not within a couple of hours of treatment but, immediately after treatment. It is very soothing. The nurses were amazed. He's less than 2 weeks out of treatment and his neck is back to normal. We found also, that Aloe Vera gel from the health food store was very healing when he swished and swallowed. Not very pleasant though... It's hard to watch a loved one go through all of the pain and suffering with not much you can do other than research. I wish you all the luck in the world...


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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