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Nick V Offline OP
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Hello everyone. My mom just completed only her 12th day of radiation and has also done one of 3 planned chemo sessions with cisplatin. The problem is that it is really getting to her. She has a lot of blistering in her mouth, she can't taste anything, and feels like throwing up every time she eats something. Thus, she is only eating through the PEG tube, which means she isn't getting as many calories but she'll probably start going to 5 cans instead of 4.

She is scheduled to have 40 days of radiation and 2 more sessions of chemo with cisplatin. Her first chemo session made her throw up and feel like crap for a couple of days and she keeps telling me that she doesn't think she can go through any more chemo. Also, she doesn't think she will be able to go make it through all 40 sessions of radiation.


CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
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Hi there- I had teh same treatment your mom had plus surgery. I know it is very difficult and taxing on the system. Let her doctors know of her symptoms so they can advise medications etc. I too only used the PEG for a while when my taste and appetite went out the window. I didn't really miss eating because it seemed so unappetising

It is crucial that she complete the reccomended treatment in order to get the best outcome possible in beating this disease. The treatment has been proven to work very well. Just continue to be there for her support her but be firm in that she must do her absolute best to complete the course of treatment.

TRy and distract her as much as possible from her symptoms by trying to give her some comforts that she likes.


Hang in there



Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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Nick

Talk to her doctors. Maybe they can reduce the dosage of chemo to a smaller weekly dose.

Does your mother understand what the outcome will be if she doesnt finish treatment?

She must do the treatments or she will not survive this awful disease. I know first hand how hard it is and I wanted to quit too. If I had quit, I woudl not be here right now. Talk to her doctors and nurses where she is being treated. Maybe she needs some pain meds, magic mouthwash to soothe her mouth. She may need anti depressants, many OC patients need that. This is something she can do, its very difficult, but it can be done.

Hang in there.


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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Nick, I wanted to mention the anti nausea drug Emend that I have been taking during my treatments. I have had 4 chemo, given once a week,amd 18 radiation treatments and I haven't been to sick until now. Trush in the mouth can be a problem and cause terrible pain but they have given me medication for that as well and the sores in my mouth cleared up. Everyone is different as you know and what works for one may not for another, but you may check with her Dr.'s and change her anti-nausea medicine. I wish you all the luck in getting your Mom to complete her treatments. I know how she feels as I to am so sick and it does get hard. Best to you all, Angel


SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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Nick V Offline OP
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thanks for all the feedback!


CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
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in some establishments you have to become a squeaky wheel to get done what is needed. make her needs and concerns known to those in charge where she is being treated. if they do not offer a solution - repeat your concerns to them. then do it again and again until they respond with something to help. there are so many meds available to help with anxiety, nausea, depression, mouth sores, etc. that there is no excuse for her to have to suffer and wantr to quit without there being something for her to try. remind her that good nutrition and fluid intake will lessen the side effects of treatment so these are vital. she should be drinking as much as possible thru treatment and be sure if she is eating thru the tube that she continues exercising her swallow reflexes because her throat will forget how to swallow if she doesn't and she doesn't want to go thru all of that on top of treatment.

keep encouraging her and be firm that she remain committed to continue in treatment. it is hard to see those we love suffer, but with this disease it is either suffer through treatment or suffer through the disease so encourage her and tell her to keep on keeping on. and then be her advocate and research help for her issues and speak to those in charge to get them to offer help.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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Another thing that will help is to switch her liquid food to something with a lot of calories per can -- Nutren 2.0 is covered by MediCare and has 500 cal/can, so she doesn't have to PEG so many cans per day.

Nestle's Carnation VHC has 560 cal/can but is apparently not listed as a PEG food, rather as a "drinkable". Nutren is also a Nestle product.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Hows her white blood cell count? I had a friend that was on Cisplatin and she got really bad mouth ulcers from the chemo because her white blood cell count was down and they gave her the neulasta shot for that and it cleared up her ulcers (she wasn't getting radiation). But, the blisters in your mothers mouth may just be related to the radiation and in that case maybe you could get some magic mouthwash from the doctor to numb her mouth so she can keep swallowing. When I first started losing my taste early on in treatment it was related to thrush - and it can be miserable, so maybe your doctors could look into that as well? There's a million things that it could be but your doctors can definitely do something to make it more bearable for her. Hope this helps some.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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I can't add much to what has been said but I had a very rough time with the Cisplatin. They even cut the last treatment (I was on the three treatment plan). I lost over 60 lbs, but back to normal now. It's no walk in the park and not for sissies. Fortunately the human nody is amazingly resilient.

I would recommend, like the others, that letting the doctor know, especially the MO and nutritionist might be a big help. PEG tube feeding can be tricky. Most people have had better results by gravity, drip slow, feeding.

Last edited by Gary; 11-12-2008 06:43 PM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Nick V Offline OP
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I didn't personally speak to the doctor's but they said they cannot give her a smaller weekly dose due to her height and weight...Magic Mouthwash is definitely helping her and we will continue the treatment! thanks for the info. on the white blood cell count and we will be asking the doctor about that.


CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
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