| Joined: Jul 2020 Posts: 3 Member | OP 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) | 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) | 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) | "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 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) | 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 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) | "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
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