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#195961 03-27-2018 04:45 AM
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Hi. I've got my first radiation session today and chemo tomorrow and am looking for some help to keep it together. I've already got some swallow disfunction from surgeries and am not sure how I'm going to hold up in there.

I got my first diagnosis in 2003 with a very small SCC on the side of the tongue. It was removed and I went 11-12 years with no recurrences. 2014 dysplasia (and a skipped follow up) lead to a 2015 diagnosis of cancer. Tumor was removed from same side of tongue as were <20 lymph nodes from my neck. Fortunately the nodes were negative. No radiation. It came back (or never left) in 2017 in the floor of my mouth. My surgeon underestimated the severity and didn't do enough to remove it. I trusted him even when last June the Mayo Clinic was advising segmental mandibulectomy and free flap surgery. This December my guy saw the light as a CT scan showed that my jaw was being further eroded.

I went on a clinical trial for Keytruda even though I am PDL-1 negative. And had some hefty surgery on 1/30.

Resected cancer from floor of mouth, tongue and segmental mandibulectomy. Fibula free flap surgery failed. Emergency surgery was only partially successful and was followed up by Leech Therapy (yes leeches) to improve blood flow to the flap. Ultimately, that wasn't enough as only about 60% of flap tissue was viable so I had a 3rd(salvage) surgery. Salvage surgery was a pec flap at the beginning of March.

Nodes are still believed to be negative. A small positive margin also makes chemo necessary.

Did I mention they said I had some kind of micro heart attack (while in the hospital) and after convincing me to get an angiogram two arteries were found more than 90% blocked! I got two stents implanted after my second surgery before I left the hospital.

My swallowing is now more labored than it used to be and I am fearful of what is to come with radiation. I have some Ativan which I hope will calm the nerves.

I've asked my doc about Amifostine for dry mouth etc. He isn't in the habit of prescribing it anymore because of "side effects, questionable efficacy and fears of tumor protection." My research seems to show Amifostine works and those fears are unwarranted. However, it might not work for people like me who are also getting chemotherapy.

Thank you in advance for your support and advice.


Jay





--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
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I’m sorry to hear you’ve gone through so much. Did you RO mention a feeding tube? Do you know how many sessions of radiation you’ll be getting? At our hospital, patients get fitted with a feeding tube at the end of the third week of radiation, which is when swallowing gets quite difficult for most people. You will need the nutrition to keep you going through radiation and chemo. I would suggest you speak ASAP to your doctor about your swallowing difficulties. A feeding tube will ensure you get the amount of hydration and calories you need. With your surgeries, it may be that you’ll need the feeding tube earlier.


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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Thank you for your reply Gloria. I do have a PEG tube which I forgot to mention. I'm on a liquid diet plus tube feeds for now. My swallowing is slow and labored except when drinking soup, shakes or water. I actually think one of my perotid glands was sacrificed during surgery. He wants to irradiate the non-cancer side as a precaution. After this long run I'm going to let him do it in an effort to try to get in front of this thing.


Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Jay,

Do you have access to the services of a dietitian at your hospital? He/she can help you determine how much to take in through the PEG and how much by mouth. A dietitian can also help you decide on the thickness of the liquids you’re drinking. I know it sounds odd, but it does make a difference whether you are drinking nectar grade or honey grade liquid. Have you tried poached eggs? They are easy to get down and my husband lived on it for the first two, three weeks of his radiation treatment. Canned pears are also good. These foods actually slide down the throat. Of course, on their own, they do not provide enough nutrition. You do need the supplements through the tube. Hang in there, you can do it.


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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Posts: 18
Gloria,

We are working with a dietician. My wife has been making a baby food puree which we have been supplementing with the standard tetra pak liquids. Thank you for the support.


Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Welcome to OCF, Jay! Im so sorry about what you have been thru. You certainly are very lucky to have had your heart problems detected while you were in the hospital. That could have turned into a very serious life threatening issue.

The following link may help you with eating. Im one who struggled like crazy trying to eat after going thru rads. With everything I went thru my eating was one thing that never returned to my pre-cancer condition. Im not complaining as I know how truly lucky I am to still be here, but it sure would be wonderful to one day eat a pizza, steak, taco, etc... Gloria mentioned canned pears, I actually had trouble with pears. I still cant eat them frown Maybe it was a texture thing, or its just another of my quirks??? Anyway, I found canned sliced or diced peaches to be the easiest to get down. How well you do going thru rads is a direct connection to how well you do with your daily intake. You definitely need the help from a dietician. You probably need a barium swallow test to ensure your swallowing is safe and no liquids are seeping into your lungs.

I also take a liquid multi-vitamin thru my tube. Centrum makes adult liquid vitamins which can easily be found in most drug or grocery stores. Its anywhere from $8-$12 a bottle which lasts about a month. Check with your doc if this would be ok. Some supplements can cause issues with medical treatments so always ask before trying.

Best wishes with everything!!!



List of Easy to Eat Foods




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
Joined: Mar 2018
Posts: 18
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Joined: Mar 2018
Posts: 18
Christine,

Thank you for support. I would dearly love to have a bite of pizza! Maybe one day. Anyone have advice on the mask? I probably won't get it in time because I'm due in an hour. I've read about cutting eye and nose holes. Gonna ask for that. Also breathing technique from another forum. Got Ativan ready. Oral spray and nose spray for breathing. Coping strategies?

Thanks,



Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Posts: 1,406
Jay, I had them cut a nose hole for me and it was a lifesaver (didn't need eye holes because I always kept them closed). But what ultimately got me through it all was listening to audio books. Since they wouldn't allow me to use earbuds I borrowed some small speakers and rested them on my stomach as I went on The Ride.

Sending all positive vibes your way.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Jun 2007
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Im sorry I must have misread your first post about starting rads. I focused on what went on during your hospitalization with your heart and how lucky you were to have it happen then. Please tell me you are not starting rads without having a mask!!! After you get past the first rad treatment, it shouldnt be so hard since you now understand what its all about. Its definitely NOT fun being in that mask and on the table but its doable!!!

Make sure you pay very close attention to your intake. This is one of the few things patients have control over. Its also what will get you thru rads in the easiest way possible. Every single day make it your goal to hit the bare minimums of 2500 calories and 48-64 oz of water. Do this every single day, if you can push yourself and take in 3000, 3500 or more thats ok, that will be a big help in how your do with side effects. Formula counts towards your water intake. You still will need regular plain water, thats especially important for patients getting chemo. You must flush that chemo out of your system. Even though the nurse will give you fluids and meds along with the chemo, you still will need a couple bottles of water the day of and after chemo. Also some chemos will affect your hearing. It could be just a little low frequency buzz but its the start of permanent hearing loss. Make certain you speak up and tell your doc for any changes, even minor ones.

Good luck!!!


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
Joined: Mar 2018
Posts: 18
Member
OP Offline
Member

Joined: Mar 2018
Posts: 18
Thank you David. I asked for eyes and nose cut outs but they would only give me one. I think they were testing to see how I did. If I freaked they might have given me both. It was a really hard decision. I wanted nose but then thought having the pressure off my eyes would be more liberating. Ultimately, I managed just fine. Ativan, breathing technique and oral moisturizing spray all played an important role. They did a dry run and actually moved me to another room because something didn't match up right with the table. After that I took a dose for about five to six minutes. That's how long my sessions will be.

Doc is also hitting my "good side" with smaller dose of radiation just in case. He's trying to shoot around the parotid gland. Anyone have luck with this? Might he be able to spare my salivary function?

All the best to everyone. I am excited to join this community.


Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
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