Previous Thread
Next Thread
Print Thread
Joined: Jul 2020
Posts: 3
Member
OP Offline
Member

Joined: Jul 2020
Posts: 3
Hi,

I was unexpectedly diagnosed with squamous cell carcinoma on the right side of my tongue, and recently had surgery. About 1/3 of my tongue was removed along with and area at the floor of my mouth. A Level 1-3 neck dissection was also performed and squamous was found in two nodes. In addition , a few squamous cells were found on a walk about in the fatty tissue by the nodes.

For all of that, I will be starting chemoradiation in a week and it will go for 6 weeks. I'm hoping that I can get some hints for getting through the chemoradiation as well as possible. I finished radiation for breast cancer in February, but I know that this is a whole different kettle of fish.

I'm glad to have found this forum and look forward to reading through the threads.

Joined: Oct 2017
Posts: 36
Likes: 2
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Oct 2017
Posts: 36
Likes: 2
Hi Diane

I went through chemo-radiation a couple of years ago.

During the process, The immune system was at the weakest. I felt very weak from week 2. I even got a infection which might be during the blood-test.

one of side-effects was my body shivered due to chemo, at one stage I was worried about staying still during radiation

take care and good luck

Michael


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/20
MRI - NED 04/21
CT - NED 10/21
CT - NED 4/22.10/22
CBCT - NED 10/22
Joined: Feb 2020
Posts: 48
Likes: 4
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Feb 2020
Posts: 48
Likes: 4
Treatment will cause painful mouth sores, which will make it harder to eat and drink (assuming you no longer need a feeding tube - my tube came out before treatment). Stay hydrated and consume enough daily calories to help your body heal. Try to stay positive. Exercise will help combat fatigue, so get some walking in. As always, keep your treatment team informed and ask for meds as needed. It will be difficult, but you can do this and beat cancer.


The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
Hi Diane,

Soft foods and smoothies are going to be your friend. I found my mouth and gums became really sensitive to temperatures and certain flavours. Mint toothpaste was changed to childrens flavoured one. I drank tepid water, tepid coffee, yogurt. Mouth sores were a nightmare, but they do go after a while.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Joined: Jul 2020
Posts: 3
Member
OP Offline
Member

Joined: Jul 2020
Posts: 3
Thank you for being so welcoming and for your advice about what I will be facing. I just heard today that I will have to final markings done on my mask tomorrow and will also have a "chemo class" for education purposes. I'm so glad that I found this forum. I've been reading through many of the threads and it really helps to have a community.

Although I had about 1/3 of my tongue removed and the neck dissection, I didn't not need a feeding tube after the surgery. I am hoping that I won't need one through the 6 weeks of chemoradiation, although the radiation oncologist talked about it as a possibility.

Joined: Aug 2019
Posts: 57
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Aug 2019
Posts: 57
I didn’t have surgery, just radiation and chemo. I had a feeding tube and was kind of glad i did. At several points in the process, eating was challenging and having the tube was the best way to maintain nutrition. I just had it removed 2 weeks ago (yay) after 11 months. It wasn’t too much of a problem and i would do it again.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Joined: Jul 2020
Posts: 3
Member
OP Offline
Member

Joined: Jul 2020
Posts: 3
Thanks for sharing your experience with a feeding tube. I'm glad that it worked out well for you, and happy that you are fine without it now.

After 7 radiation treatments and 2 five hour sessions of chemo, I understand more now about how these treatments can affect your ability to eat...not to mention your interest in eating.

My mouth is so dry that eating is tough now. Combined with the metallic aftertaste from the cisplatin, even liquids taste pretty marginal.

I'm hanging in there and looking forward to the end of the treatments. Definitely a learning experience.

Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
Cisplatin is awful. I found the only thing that temporarily got rid of the taste, was a tepid cup of coffee. Everything else was grim.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5