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#199964 03-20-2020 02:29 PM
Joined: Feb 2020
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Day 8: I seem to be developing an itchy rash on my lower legs. Took some pictures and used a patient app to message one of my team doctors, who I am seeing next week. No signs of a rash on my upper body or arms yet. No fever. No sneezing or coughing. Just an itchy rash. Could be worse.

My tongue seems to be healing well since the end of my radiation treatment last week. The sores are not hurting as much right now. Mucus thickness has declined. Not drooling as much anymore at night. I am eating a pot pie soaked in cream of chicken soup thinned with milk. Able to swallow without choking on small chunks of food. Woo! A few days ago I was limited to cream of wheat and ensure.

My neck burn is not peeling anymore. Happy to keep my daily intake up every day. I try to take a walk when I can and had my bike fixed so I can take a ride the next warm day we get here.


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: Feb 2020
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Day 40: My daily intake has been going great. I can eat most of what I want with limitations. Anything too chewy is out, like fresh veggies. Some foods will sometimes irritate the back of my mouth/throat.

Staying at home for the most part, except to pick up groceries ( with a mask) and prescriptions. Speaking of which, I had a video visit with my PCP today and was prescribed Gabapentin (Neurontin) for the neck dissection nerve pain that I've been having since surgery. Hoping it helps to alleviate the nerve pain. 🤔

A recent blood draw revealed that my white blood cells have rebounded and most other numbers are looking good. But I still have anemia. Could be from the treatment I figure, or it might be still ongoing from before my cancer diagnosis last fall. Not sure which.

My energy levels have improved quite a bit since I came home from Ann Arbor where I had my treatment. I don't need to take naps during the day anymore, but I do go to bed early so I can get about 10 hours of sleep. I go on walks around the neighborhood on nice days or ride my bike. Looking forward to the gym opening up so I can restart my strength training.

I will be having my 3 month post- treatment PET scan in June, as long as the coronavirus lockdown is lifted by then. Hanging in there...


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: Feb 2020
Posts: 48
Likes: 3
Contributing Member (25+ posts)
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Joined: Feb 2020
Posts: 48
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Day 70: Hard to believe that 70 days have passed since I came home from Ann Arbor after undergoing treatment.

I've been seeing a therapist by video for lymphedema in my neck that has continued to worsen since ending treatment. I have to do manual drainage massages every day to help reduce it. I ordered a compression garment today suggested by my therapist to aid in reducing the swelling as well.

Has anyone else here had head and neck lymphedema after completing treatment?

On an unrelated note, today has been a rough day because my cat passed away this morning. She was 19 years old. RIP Samantha...


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: Feb 2020
Posts: 48
Likes: 3
Contributing Member (25+ posts)
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Joined: Feb 2020
Posts: 48
Likes: 3
Day 89: I had my 3 month post-treatment PET scan yesterday and met with my ENT/surgeon today. The results are fantastic. Cancer free! What a relief. Woot!


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: Oct 2012
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Congratulations!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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"OCF across the pond"
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Fantastic news


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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