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#145200 - 01/29/12 02:14 PM Re: Odds of needing a PEG during treatment [Re: Cheryld]
sallyanne Offline
Supporting Member (50+ posts)

Registered: 08/06/11
Posts: 78
Loc: New York, NY
Hi Ben,
I just finished up 30x IMRT on Dec 27, following a partial left glossectomy and a neck dissection. I told the doctors that I wanted to push through this without a PEG and they happily let me. Some days were tough, but if you remain tough and look at the water and shakes as medicine, you can do it. I was lucky not to need chemo, which I'm sure made my journey a bit easier.
I am a month out of treatment, still have a few sores, tongue mobility is poor but steadily improving. Just yesterday I was thrilled to find enjoy some scrambled eggs and cheese and a strawberry milkshake with taste and all.
You will muscle through this and be on the other side of treatment before you know it!!
Sally
_________________________
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11

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#145204 - 01/29/12 03:39 PM Re: Odds of needing a PEG during treatment [Re: sallyanne]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7942
Loc: PA
Richard, now thats funny! Ive had some odd encounters with my tube as well. Its leaked so it looked like I wet myself. Its stuck out in the grocery store and amazed young children.

Sally, you are very fortunate! Most of us got 35 radiation treatments. Let me tell you that last week was the worst one! That week is where the going gets tough. Congrats on your great recovery!

Cheryl is one of the lucky ones who got thru this relatively easy. Not that any of us have it that easy. All OC patients go thru some hardships.

Ben, I hope you are able to make an informed decision with all the responses. For me I tried to say NO but my nurse convinced me to get one and I needed it. I felt it was the one thing in my treatment that I had control over. Choose wisely, it is a very important decision.
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#145252 - 01/30/12 04:21 PM Re: Odds of needing a PEG during treatment [Re: ChristineB]
slim Offline
Platinum Member (300+ posts)

Registered: 01/23/09
Posts: 473
Loc: PA
Hi Richard. When we met with John's RO he is the first one of the doctors who brought up the PEG. We knew nothing about any of this going into it. John in the beginning absolutely refused it said he wouldn't need it. His RO told him he only had two patients make it completely through treatments without one. He STRONGLY advised John to get one saying that once the treatments got started he did not want them to stop so he could have a PEG placed. He told us that the body fights a lot harder when it is properly nourished and hydrated. John reluctantly agreed and got one two weeks before treatments started. He didn't start using it until around week three of treatments. Even with it in he lost 30 lbs. He managed to avoid being hospitalized during treatments for dehydration. He continued to swallow liquids every day so he never lost that ability. He had the PEG removed 2 1/2 months after treatments were over. Let's face it no one is "comfortable" with one or wants to get one. We looked at it as just another tool to fight this cancer. Good luck!
_________________________
Wanda (47) caregiver to husband John (56) age at diag.
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-13 - HBO (30 dives) tooth extraction

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#145362 - 02/02/12 02:38 AM Re: Odds of needing a PEG during treatment [Re: slim]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 791
Loc: NY
Hi Ben,
Kevin was not fond of the PEG idea either, but his doc was also pretty insistent. He had it put in, very easy procedure, but only used it a few times. It grossed him out so he forced Ensure down. He would do a lidocaine rinse and a shot of Lortab, then drink. It still hurt though. He ended up losing about 54 lbs. He had it to lose though, so he was lucky. That is something to consider also.
We are now a little over 3 months out from last tx and he is eating almost everything...except bananas burn like crazy!! They are the only thing that REALLY hurt now. He even ate steak tonight for the first time. He tried about a month out but choked a bit so red meat has been avoided since then. Tonight went well.
Something he did during the chemo was to take a probiotic. He had so much pain in his colon from the chemo I just didn't know what to do. The doc just kept giving him stronger and stronger pain meds which constipated him horribly and just made him a wreck. I got him Activia to try for a few days. The pain got better and things got back to normal. So with the next round of chemo we got Align. The doc said it was ok and he breezed through it. Well, not breezed, but compared to the first round it was way better.
Good luck with everything. We look forward to hearing from you as you proceed. You are NOT alone. I wish we had found this site prior to beginning tx. It was a LONELY 6-8 weeks.
Blessings,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#145598 - 02/09/12 03:46 AM Re: Odds of needing a PEG during treatment [Re: KP5]
msmac Offline
Gold Member (200+ posts)

Registered: 05/01/11
Posts: 261
Loc: california
I didn't use a PEG but switched to a completely liquid diet by the end of the third week. It was difficult to swallow near the end and I definitely used my pain meds quite a bit so I could get my shakes down. My RO doesnt routinely give patients PEGs but different doctors vary on what they recommend. I think a PEG can be really helpful and keeping up your nutrition during and after treatment is very important. I wish you the best of luck whatever you decide to do.
_________________________
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.

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#145991 - 02/16/12 11:50 PM Re: Odds of needing a PEG during treatment [Re: AvatarMN]
emilyp Offline
Senior Member (100+ posts)

Registered: 12/09/11
Posts: 107
Loc: New Orleans, LA
I also had oral tongue cancer, and am happy to say I was able to go through treatment without getting the PEG tube. I lost over half of my tongue during surgery, had reconstruction, and finished my treatment on 1/13/12.
I will say, however, it was very difficult to eat during treatment, and continues to be a challenge. By week 2, my ulcers were very bad and I switched to a mainly liquid diet (ensure plus). During treatment, I managed to keep my weight stable, and only lost about 4 lbs. my main motive to stay off the feeding tube was that I didn't want to have swallowing difficulty after, so I tried very hard to maintain my nutrition and hydration.
Unfortunately, it was not easy, and still challenging to eat! I am still getting ulcers, but have begun to eat solid food, and hope the ulcers will end soon. It gets better though, and it is definitely possible. Good luck!
_________________________
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011

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#145998 - 02/17/12 01:42 AM Re: Odds of needing a PEG during treatment [Re: emilyp]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7942
Loc: PA
Emily, the original poster has decided to go with the PEG tube. He got this placed today. I give you alot of credit for thoughing it out without a feeding tube. Definitely NOT easy, good job!

_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#146420 - 02/26/12 01:10 PM Re: Odds of needing a PEG during treatment [Re: AvatarMN]
vet tech Offline
Member

Registered: 02/19/12
Posts: 5
Loc: Minnesota
I have tonsil cancer and lymphnode involvement on both sides of my neck. I had 2 surgeries and 2 rounds of radiation in 8 months. I did not get a PEG tube. I have horrible mouth ulcers, chronic thrush and I can't eat fruit because of the acid and most other foods I eat based on texture. Most of my taste is gone. Meat tastes somewhat like metal. I have a loss of appetite and alot of weight loss but I chose not to get a PEG tube because I felt like I lost control over another aspect of my life. I just powered through it. I have 3 treatments left of my radiation. I did not have chemo. I think it is a choice and as long as you can eat something and not loose a dangerous amount of weight I would not do it but I tend to be a maryter when comes to pain.

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#146443 - 02/27/12 05:10 AM Re: Odds of needing a PEG during treatment [Re: vet tech]
Cheryld Online   content
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4603
Loc: Toronto canada
Wow on the doubling...and getting through it. A you know the next few weeks wikl suck- so I'm wishing you much luck, and prayers!
_________________________
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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#146450 - 02/27/12 11:44 AM Re: Odds of needing a PEG during treatment [Re: Cheryld]
vet tech Offline
Member

Registered: 02/19/12
Posts: 5
Loc: Minnesota
thank you!

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