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#177521 02-15-2014 03:18 AM
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I made it through three of six weeks before I got so bad my docs have called a break. I am purely PEG at this point, with sips of water. My tongue is so covered with sores and burns it looks like a horror movie. And now I notice that despite a couple days off, it has swollen ginormously.

I have also lost hair, which was disturbing more by its suddenness. It is mostly under my ponytail, along the rad line. I will at least get a great geisha neck out of this.

How does one go on with this? I was low on reserves to start with, due to a year of surgeries and my own prior health issues. I just do not see this going well. I am also at the point of needing a driver due to pain meds, though nothing quite touches the mouth pain. My parents have been great for this.

Lest this be all whine, I love all my nurses and the docs are great when I figure out the right questions to ask. The chemo place is actually pleasant.

Any survival tips? Comfort for the halfway mark? My side effects kicked in very early, and I do know it only gets worse from here.

Needing comfort,
Kristen


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Jan 2013
Posts: 1,291
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Kristen,

I am sorry to hear about the impact of your side effects. During rads my mouth had bad sores still categorized as mucositis and I never felt thrush was an issue. Like you I took plenty of pain meds but my mouth was still most painful. Keep upping the narcos. I started on hydrocode, then oxycodone, then morphine. Each drug was upped in dosage then I switched up. I think I was at about 200mg of morphine a day to just stave off the pain.

Back to the mouth. I used the following with limited but noticeable improvement. Salt/baking soda solution. Magic mouthwash. Liquid lidocaine. Dental paste you put right on the sores and it gets hard like wax.

Again, I am sorry to hear about the sores, they were the worst for me to treat. Good news, it does not last forever but it will be a few weeks of tough sledding. Good luck, don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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"Above & Beyond" Member (500+ posts)
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Hi Kristen:
Sorry to hear about the misery. Hair loss at the base of my neck was also a surprise. I wouldn't have known about it unless someone told me. I am 7 weeks post treatment now and it has started coming back. I know that doesn't help you right now, but it does promise there is light at the end of this tunnel, even though right now for you it looks awfully dark and scary.

When I was in treatment the guy who had the time slot just ahead of mine had a lot of problems with skin burns on his neck from the radiation. They were bad enough that he had to stop/delay treatment on more than one occasion. You haven't mentioned neck burns yet, that's good. Be sure and keep up the daily use of Aquaphor to keep that skin soft and pliable and avoid wearing shirts with collars that can rub the skin and cause sores. The last thing you need right now is another side effect to deal with.

The forum may be your best place to help get you through all these side effects from treatment. Of course, we can't make them go away, but sometimes just hearing that others had them too and how bad they were might help you, kind of a yours are bad but his were worse, and he got through his, and so will you.

One last thought, in the beginning, when we are first diagnosed and we start learning what we are about to go through the load seems just to large to bear. How does anyone get through this? But then family members come along and tell you and show you how to endure it one day at a time. If it gets really bad, how to endure it one hour at a time. So, I remind you of the same thing, your job today is to just get through today, it is NOT to worry about tomorrow. I will bet that you already know you CAN get through today no matter how bad all the effects are. So, do just that, get through today. Tomorrow, you will wake up and realize you got through yesterday, you won that battle, and that will give you strength to get through it again.

Yes, the side effects sometimes get worse. But, I've never heard of anyone who didn't make it through treatment. You will make it through too, you just have a rough patch to get through right now. Keep taking your pain meds, keep up your hydration and your nutrition, soon enough you will begin to see a light at the end of this dark tunnel.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Kristen, the best advice I can give you is to focus on what is within your control.... your intake. Every single day take in at least 2500 calories and a minimum of 48 oz of water (more of both is MUCH better). This will unfortunately get progressively harder as your treatments continue. Push yourself and it will help you to get thru it easier.

I know its not easy to get thru. My heart goes out to you and all those in the midst of their treatments. Hang in there, we will help you get past this bad spell.


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
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Kristen it sucks. And I know things are brutal but try to plug through without the breaks if you can. I lost the hair too... Had a LOVELY bald below the ears thing happening and it actually thinned out up to my crown on my tumor side... Not pretty but i used a scrunchy to pull my hair back into a ponytail/bun it had all of maybe 3 hairs in it but I lived like that for three months post treatment - by that time I had 1.5 inch sprouts and had extensions put I for about 6 months - then took them out and had a bob. I also used those colorful yoga headbands it didn't look amazing but it was ok.
As for pain and mouth sores, I rinsed, I carefully cleaned my mouth after every meal / drink - and I used manuka honey - it helped with the sores. I was very blessed in that I was able to tolerate the pain.

Hugs girl you will get through this - push yourself. And use your pain meds if they help, I couldn't use my peg so I chugged ensure several times a day - not fun but it worked.


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
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Hi Kristen, breaks my heart to hear what you are going thru. I, thanks to cheryld, used Manuka honey and it seemed to help. I also used a product called glutasolve which seemed to help too. Like everyone else I lost my hair and still need to wear my hair in a low pony tail. I have so much hair it really didn't effect me, other than it does feel breezy back there at times.
Best wishes and many blessings to you Kristen.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Posts: 346
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Thank you all for the reassurance. The break did help, both physically and emotionally. Now I have finished my fourth week. If I can keep it up, I will get a short break at the end of the month for a special trip. That is the happy thought I am holding on to. At least I have more pain meds now. I cannot get as much food in me as they woukd like, but at least I have gotten that stable, so I will be content. The hair is distressing in its suddenness and persistence, but that is the one side effect I do trust is short term, so I am okay with it. My mouth is my bigger scary concern. But everyone hete is very kind and uplifting and pushy in just the right ways, thank you!

Still hanging on by a hair,
Kristen


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Jan 2011
Posts: 168
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Jan 2011
Posts: 168
Hi Kristen: I'm glad that the break helped. Reading your post reminded me of my journey, which, like yours, was nothing short of a journey to hell, but I got through it, and you will get through it, too That's what people on this site told me, and knowing that they had gone through it, too, made me believe them. This site saved my life, helped me to feel less lonely and isolated. Hope you are finding strength from it, too. All the best, Michelle


SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.

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