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Re: Hello everyone [Re: Barry Toronto] #199385
11-04-2019 04:06 PM
11-04-2019 04:06 PM
Joined: Oct 2012
Posts: 1,221
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Joined: Oct 2012
Posts: 1,221
Toronto, Canada
Hi Barry,

Recovery from radiation includes allowing the inside of your throat, which you can’t see, to heal and scar over too. I was actually taken aback when the RO did a scope post treatment and told my husband that he saw a lot of scarring. That may explain why swallowing and re-introducing solid food is difficult for you at this moment. The inside is probably still raw.

Toast is probably too hard for you to swallow right now. If you really want to try solids, make sure the food is covered in a lot of sauce so that it goes down more easily.

There were a couple of times when John swallowed some food and it seemed like he was doing okay, but then after a couple of hours, the food came back up because it never did go down into the esophagus. I don’t know if that was the case with you. But I know how frustrating and upsetting that can be. Do you have a dietitian assigned to you at the hospital? Is it possible for you to pick his/her brains?


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.
Re: Hello everyone [Re: gmcraft] #199386
11-04-2019 05:11 PM
11-04-2019 05:11 PM
Joined: Jul 2019
Posts: 12
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Drew Skinner Offline
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Drew Skinner  Offline
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Joined: Jul 2019
Posts: 12
Hi Barry;

Congrats for having made the journey to the other side. I really can't comment on the food (yet). I'm 8 weeks post-surgery and 2 weeks into the radiation. Had my first Cisplatin about a week ago. My side effects seem to be about the same as yours (first dose), but I am having trouble with my ears and, from what I've read, platinum based drugs can cause permanent damage. Will find out as I go. I also have a genetic blood vessel disorder and, with the home care nurse giving me 1000ml fluid a day, am getting almost constant nosebleeds. I may have to change the amount of fluids as my blood pressure is sensitive.

On to food, before I worked in business, I was a licensed chef for a long time. I've searched places (like Amazon) and there really are no books that deal directly with oral cancer. There's a lot of stuff on pureed foods and things like "superfoods to beat/prevent cancer", but I can't seem to find anything that deals with the intracacies of oral cancer. We'll probably all have throat issues due to radiation, some from throat surgery. Then there's mouth surgery, tongue, lips, and any combination, where eating and diet are going to be a challenge. This doesn't even begin to mention side effects, allergies (preferences eg: vegan, vegetarian, etc).

I think a book like that with "adaptive recipes" might well be called for. I may even work on something (give me something to twiddle my fingers with). Perhaps a book could even support OCF.

As for my situation, they removed my teeth to get at the cancer, 3 1/2 inches of jaw, about an inch of tongue and whatever else they saw.

I'm finding thick soups, high is both protein and carbs (lentils, meats, potatoes, other veggies) and creamed soups the easiest right now. Smoothies, ensure, and pureed everything doesn't make for an outstanding "menu". They won't replace my teeth until February (after I heal from radiation and chemo). I'd personally love to see something out there with ideas for the next few months.

I can understand feeling sick from a scrambled egg. I scambled 3 with about a tbsp of butter and felt gross for hours. A thick soup cured that.

I'm actually not looking forward to the end of treatment. I'll be worrying or wanting that MRI or PET scan as soon as I can get it. That said I've faith in everything and am going to try and plan a cruise for the spring.

Barry, I think you've done amazingly well - a metaphorical toast to you. Please keep in touch.

Drew.

Re: Hello everyone [Re: Drew Skinner] #199387
11-04-2019 05:49 PM
11-04-2019 05:49 PM
Joined: Mar 2018
Posts: 71
Maine
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Vicky1 Offline
Supporting Member (50+ posts)
Vicky1  Offline
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Joined: Mar 2018
Posts: 71
Maine
Hi All,

I bought these cookbooks when my dad was diagnosed. I've linked them in order of my preference. Figured I'd share in case there's something in there you might like.

https://www.amazon.com/gp/product/0757002900/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
https://www.amazon.com/gp/product/0985423102/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
https://www.amazon.com/gp/product/1604430052/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Some of the recipes were not easily chewed, despite the book's titles.


Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
Re: Hello everyone [Re: Drew Skinner] #199389
11-04-2019 06:01 PM
11-04-2019 06:01 PM
Joined: Jul 2012
Posts: 3,267
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,267
NYC
Here is a site that has web links to books and websites in regards to difficulty eating and swallowing. There are a few written by those in the head and neck cancer field.

https://kelliesfoodtoglow.com/nutri...ew-and-easy-to-swallow-recipe-ideas/?amp

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Hello everyone [Re: gmcraft] #199393
11-06-2019 07:11 AM
11-06-2019 07:11 AM
Joined: Aug 2019
Posts: 56
B
Barry Toronto Offline OP
Supporting Member (50+ posts)
Barry Toronto  Offline OP
Supporting Member (50+ posts)
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Joined: Aug 2019
Posts: 56
Hey gmcraft. Thank you for the advice. I contacted the nutritionist at the hospital. She thought it might have been a little early in the healing process to reintroduce solid food (like a few on here have also suggested), and that the toast might have been my downfall. She encouraged me to continue to experiment with small servings of soft foods to find the ones that are the least irritating to my unsealed digestive system.


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.
Re: Hello everyone [Re: Barry Toronto] #199654
01-01-2020 06:56 PM
01-01-2020 06:56 PM
Joined: Aug 2019
Posts: 56
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Barry Toronto Offline OP
Supporting Member (50+ posts)
Barry Toronto  Offline OP
Supporting Member (50+ posts)
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Joined: Aug 2019
Posts: 56
Hi everyone. Brief update 9 weeks after treatments finished:

Eating solids is still a difficult grind. I am pushing myself to eat everything but I find it to be a mental obstacle to devote myself to it 24/7. Still very little appetite, taste buds coming around but still a work in progress, and some level of discomfort with each swallow. Nonetheless I am convinced that I have to continue to make progress in this area.

Energy comes back in fits and starts for me. I generally feel more alert and energetic in the morning and can do more and eat more. Some days it is hard to stay awake much past early evening, other days are much better. It’s hard to link my varying energy levels with anything - they just seem random.

A couple of weeks ago, I started to feel a bit of a tingling sensation on the right side of my tongue about half the distance between the tip and base. At first, I didn’t think much about it, but felt a bit of pain when doing exercises my speech pathologist suggested for stretching out my jaw. The pain has gotten progressively worse over the past couple of weeks and I called my radiation oncologist about it this week. I’m a bit paranoid that there is some residual tumour activity in my tongue. I was already scheduled for a follow up mri’s and ct scan this week so the oncologist suggested sticking with those appointments and she will review the results Jan 12. I realize that there can be lots of more benign explanations for these new pains than a return of cancer but 9 weeks out of treatment it is hard to think about it rationally objectively.

Anyone with suggestions on riding this emotional roller coaster, please chime in. Will let you know outcome of scans after review on Jan 12.


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.
Re: Hello everyone [Re: Barry Toronto] #199709
01-23-2020 12:30 PM
01-23-2020 12:30 PM
Joined: Aug 2019
Posts: 56
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Barry Toronto Offline OP
Supporting Member (50+ posts)
Barry Toronto  Offline OP
Supporting Member (50+ posts)
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Joined: Aug 2019
Posts: 56
Update of last three weeks:

Met with MO and RO on the 12th of Jan. They had the results of the MRI and the pictures of the CT scan but radiologist had not yet reviewed (apparently there is a shortage of radiologists up our way). The MRI showed that the main tumour had shrunk drastically but was still visible. RO thought this was about what she expected given the tumour was quite large when treatments began. She thought that the swelling and pain I was experiencing could be a radiation side effect - scarred tissue causing fluid to be trapped, causing swelling and pain. She set up a PET Scan for next week to make sure there was no further active disease areas. Fingers crossed.

Meanwhile, swelling and pain have been progressing, so upped the dose of hydromorphone and pregabalin and adding some type of steroidal drug to help with inflammation.

Eating has been ok. Mostly liquid - soups, smoothies, etc., but if the pain in my mouth were to get resolved, I think I could begin a more solid food diet. Weight has stabilized, but hasn’t started to increase yet (New Years resolution is to gain 10 lbs).

Bottom line - progress but still anxious times awaiting PET. Thanks to everyone for listening, it is great to have a place to vent!


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.
Re: Hello everyone [Re: Barry Toronto] #199712
01-24-2020 10:07 AM
01-24-2020 10:07 AM
Joined: Oct 2012
Posts: 1,221
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Joined: Oct 2012
Posts: 1,221
Toronto, Canada
It appears that you are getting very good care. I like how your RO is cautious and has ordered a PET.

Hopefully you’ll feel better soon.


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.
Re: Hello everyone [Re: gmcraft] #199716
01-26-2020 06:40 AM
01-26-2020 06:40 AM
Joined: Aug 2019
Posts: 56
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Barry Toronto Offline OP
Supporting Member (50+ posts)
Barry Toronto  Offline OP
Supporting Member (50+ posts)
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Joined: Aug 2019
Posts: 56
Thanks Gloria. My RO is “cautious” or responding to my anxiety about the new pains I’m experiencing. I’m getting the feeling that the survivors of this disease live the rest of their lives with anxiety over a cough or any form of oral pain? Do you ever get over that?

Second question for caregivers. What can patients do to reduce the “burden” on caregivers?

This may sound odd, but I have noticed that in many ways, my cancer diagnosis has been more difficult on my wife (and caregiver) than it has been on me. It is not as much the physical burden (I have done reasonably well in that front) it is more the emotional burden - coping with the effects of cancer on our relationship; the unknown prospects for the future; feeling helpless at times in managing the disease, difficulty sleeping - I could go on, but I suspect many of you caregivers can relate.

Any suggestions on how to reduce these burdens on my spouse / caregiver? I’m starting to get a little worried about her.

Last edited by Barry Toronto; 01-26-2020 06:41 AM.

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.
Re: Hello everyone [Re: Barry Toronto] #199717
01-26-2020 08:07 AM
01-26-2020 08:07 AM
Joined: Oct 2012
Posts: 1,221
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,221
Toronto, Canada
You’re right that it’s hard on the caregiver as well. I went back to see my therapist after I was told that John’s immunotherapy trial did not work. I recognized that I needed someone to talk to and friends were not the best people to reach out to. They just could not understand the complexity of oral cancer and its treatments. John had a therapist that he saw too on a regular basis.

All through John’s treatment, it was important for me to get up early enough so I could have breakfast quietly on my own. That was the one time I really valued. I guess it’s a way of saying that I needed some “me time” during the day. I am a knitter so I ended up doing a lot of knitting both in the waiting room or when I went with John to his treatments. Knitting is also calming because I could focus on something else. I read too, but it was difficult to read because my mine would be so busy that I literally lost the plot. I knew from the very first that being diagnosed Stage 4, John’s chances were not good. I did not focus on the “what if’s”, instead I focused on the next step, like I would not worry about an upcoming scan until we were sitting in the doctor’s office waiting for the results. I kept meticulous notes on medication, intake and I could talk to the doctors and nurses knowledgeably about whatever they needed to know. It’s my way of contributing to his care — I did not just do what we were told to do, I actively managed the case. (One time, I had a hospital pharmacist asking me if I was a pharmacist as I was talking to her about serotonin syndrome and she couldn’t understand how I knew all that.) I actively advocated for John. If he was in Emergency, I would be making sure he was getting the help he needed in a timely manner. When he was in hospital, for example, I made sure his sheets were changed and if not, I would go talk to the nurse in charge.

Then, of course, I was on this forum everyday picking up pointers and cheering people on. I’m sure you’ve felt the camaraderie here. I learned a lot from here that I could use in caring for John and I got a lot of comfort too.

Going back to your first question, yes, the anxiety can be overwhelming. I honestly felt I suffered from PTSD and it took me two years after John’s passing to feel like my old self again. During John’s treatment, knowing where and how I could get help was the crutch I leaned on. John had a fantastic family doctor and he would ask to see John every month to check on him and if John was ever unwell, we knew we could get in to see him the same day. (John once had the hiccups for hours on end and the doctor gave us an appointment at the end of his day so he could get relief.). John had a nurse from CCAC visiting weekly and she’s a gem. The pharmacists at my Shoppers talked to me as a friend, explained stuff to me and even offered to deliver the medication when I couldn’t leave the house. Having the support network and being able to use it was so important. I am very grateful to all of them who gave me the help. Someone recently commented that that’s what these people were trained to do — that’s true to some extent, but I needed to want to accept their help and tell them I needed the help.

The most important thing is perhaps knowing that you are not alone in this. If you or your wife would like to send me a PM (private message), please feel free to do so. Tap on the little envelope on the top right hand side of the page next to your name.


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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