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gmcraft #196762 07-13-2018 10:20 AM
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Hi Gloria, I'm very sorry to hear about your husband. This type of cancer is brutal to the people who get it and the people who love them. Yes, it would be a total glossectomy. Because I've experienced the limitations of a semiglossectomy, I know I don't want to have the limitations of a total glossectomy. I wouldn't give up more than I already have. I'm not afraid of dying. I'm more afraid of living a life I don't enjoy. I'm sure there are a lot of people who disagree with me but each individual is different in what they will accept for quality of life. Thank you for the information about Tammy.


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MarvB #196763 07-13-2018 05:39 PM
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Marv, one of the most inspirational people here is misskate. She has overcome the difficulties of a total glossectomy and is thriving. Heres a link to her profile where you can easily read her posts.

Miss Kate's profile/list of posts


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
MarvB #196782 07-17-2018 12:08 PM
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Carol,

I got a second opinion on surgery and it was about the same as the first. They both said they would not recommend surgery due to the location. The second surgeon described the surgical procedure required as morbid. He too said radiation and chemo were my best options. I then talked to a radiologist and an Oncologist also and they said the same thing. I had a new mask made and they're going to redirect the radiation to focus on the new site. I'll also have three sessions of Cisplatin scheduled. They're eight hour sessions. Three hours flushing my system, two hours of chemo and three more hours flushing my system. It's to help prevent kidney problems and reduce nausea.

If I do nothing or the treatment doesn't work, one doctor gave me about two months. Another gave me up to six months. I always thought if I heard something like that I would go out and do all the crazy things I wanted to do but hadn't. Instead I find that all I want is normalcy. I don't want excitement. I don't want adventure. I just want my normal, everyday life back. Anyway, I'll post my progress for at least the next two months. It's up in the air after that.

Thank you everyone for your suggestions


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MarvB #196783 07-17-2018 04:26 PM
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Marv, when do you begin rads? Im sure you have read things here about rads and chemo treatments. Many patients run into difficulties due to their ability to eat and drink being compromised due to mainly sense of taste changes and mouth/throat pain. I'll be honest... its no picnic but it is doable. Focus on what is within your control, take meds to manage any pain and nausea. Most important is to make your intake top priority. Every single day from now thru you hit your first year post rads, your daily minimum needs to be at least 2500 calories and 48-64 oz of water. If you can push yourself and hit 3000 calories and 64 oz water daily that will help to make your experience having rads and chemo as easy as possible.

Theres drivers available who can help get you back and forth to your treatments thru the American Cancer Society's volunteer driver program. Going thru rads/chemo can take alot out of a person. The American Cancer Society (ACS) has volunteers who are former cancer patients or their caregivers to staff the driver program. I used it myself a couple times and couldnt believe the kindness of the people who drove me 45 minutes each way to my appointments. Plus they drove 45 minutes up to pick me up and then another 45 minutes back to their house. I was so impressed at the kindness of strangers that I became a volunteer driver too once I recovered from my own bouts of cancer. I had a favorite client, a little tiny elderly lady who was as sweet as could be even though she was going thru some very difficult times. Even if you have a driver 2 days a week, it helps make things easier for you and anyone you have helping you. It requires some paperwork to set you up with a volunteer driver so if you are interested you may want to give the ACS a call or check out their website. There's also another program the ACS has to help patients with prescription medicine co-pays and/or transportation costs. The ACS will give up to $300 to cancer patients to help cover transportation expenses or co-pays at the pharmacy. I dont know if you need this or not but to me at the time it was a much welcomed break to help me make ends meet a little easier during a rough time for me and my children.

Just always remember, we are here to help you. I understand part of what you are going thru. I was facing very low odds of survival in 2009. As a single mother I was completely devastated constantly worrying what would become of my children if I did not survive. I remember how hard this was to accept and know your situation is not easy to manage either. There should be some professionals at your treatment center that specialize in helping patients to mentally work thru serious medical challenges. It cant hurt to ask about what is offered and go for a couple appointments to see if it works for you. At OCF, we have seen all kinds of different situations and know first hand how difficult oral cancer can be not just to get diagnosed with but to get thru treatments and recovery phases as well. Definitely NOT easy for most of us. Its ok to vent, rant, rave, etc. We're here for you, its ok to lean on us. We have gone thru similar battles ourselves and have some insight as to how mentally difficult this is to handle.

Hang in there!!! Wishing you all the very best with everything. Please let us know if there is anything we can do to help you.


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
MarvB #196785 07-18-2018 07:16 AM
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Hi Carol, Thanks for the words of advice and encouragement. I'm having a PEG tube put in tomorrow. Three weeks ago I was at a point where I could eat semi solid foods and was able to speak and was pain free. Now,because of the pain and swelling in my tongue from the cancer, I can only down liquids and can't talk. If the pain or swelling increase much more, I won't be able to even down liquids.It's to painful to move my tongue even with the strongest pain meds I dare to take. I tried using lidocaine directly on it but that just seems to upset it. So, I've regressed quickly in the last three weeks. Now, from the time I wake up, the only thing I look forward to each day is going back to sleep at night. It's the only way I can escape the pain for a while. I load up on the meds I'm on that cause drowsiness just before I go to bed to help me sleep..

I restart radiation and start chemo on Monday. There is a team of doctors and specialists there to help me. My wife drives me back and forth, which is about an hour and a half each way. She has been there even when I could drive myself. I have a great support system. But, I'm sure there are other people on here who feel the same way I do. That this is a lonely journey no matter how many well intentioned people you have around you. They can be there for you but they can't be there with you. Only you know what it feels like and only your life is at stake. That said, it would be much more difficult without support. For some reason, it bothers me when people smile and tell me I'm doing great and that I'm going to beat this. I'm not doing great and,based on statistics, I probably won't beat it. I don't say that because I'm down. I say it because it's true. I deal with best when I face the truth. Seems like a lot of people deal better in fantasy.

Thanks again,
Marv


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MarvB #196787 07-18-2018 01:35 PM
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To anyone interested I'm not advocating that anyone do this but it's something that worked for me. The cancer pain on my tongue doesn't respond well to most pain meds. I use lidocaine on it directly, which works but only for a short time. If I swallow it, it also numbs my throat which I don't want. I'm in a state where I can use medical marijuana. I watched a YouTube video by Rick Simpson who said to put THC oil directly on a lesion for pain relief. I got some THC oil and tried it. It works better than Lidocaine and lasts longer. Just a little drop is enough to keep the pain away for about 4 to 6 hours. It is also good to increase appetite. Unfortunately, it will get you high so I only use a little at a time except in the evening. Then I take more to kill the pain and it helps me sleep. It's made my life more bearable by decreasing the pain throughout the day.


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MarvB #196788 07-18-2018 06:29 PM
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That's good information, and, honestly, given the stress you must be facing, who cares if you get a little high? (I don't say that lightly, but I figure, if anybody merits a little stress relief right now, you do!) I've been admiring your courage and your attitude to face the worst. Don't give up ... please! ... but I like your spunk, and I too hate platitudes that are said more to cheer up the speaker than the recipient. (You get stupid ones like that when you have a miscarriage, too. It's a wonder I didn't do anything to get hauled up on assault charges during that season... )

Thank you also for keeping everyone posted. Forgive me if this sounds cliche, but you're a brave man. I'm going to keep rooting for you, whatever happens. I don't think you're anywhere near my area (hard to scroll back and see while typing), but if you happen to be in north Alabama, and need more support as time goes on, let me know. Even if I can't help, I can certainly make calls and find folks who can.

(And now I see you are in Michigan, not sure how I didn't see that, sorry.)

Last edited by KristenS; 07-18-2018 06:30 PM.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
MarvB #196790 07-20-2018 10:28 AM
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Hi Kristen, Thanks for the compliment but I don't see myself as brave. Being brave would require having the opportunity to run from a situation and not running. I don't have that option so I see myself as someone put in a bad situation with no promising way out. I just picked the option I thought gave me the best chance for a somewhat normal life.

I know what you mean about things people say. I think the one that bothers me most is when they say "I know what you're going through". Another is' We're going through this with you". I know they're probably well intentioned but it still upsets me to hear it. That probably says more about me than them.

So, you live in Alabama. It's one of our favorite states. For the last three years my wife and I spend some of the winter months in Gulf Shores. Last year, we divided our time between Sarasota, Fl and Gulf Shores. We planned to go back to both places this year but that isn't looking too promising at this point. However, we haven't cancelled our reservations on either of the condos yet. Things could turn around.

Again, thanks for the words of encouragement. I hope things are going well for you. I can see that you've been through a lot.

Marv



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MarvB #196797 07-21-2018 01:39 AM
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Hello Marv,
I'm the Tammy who Gloria mentioned. My Husband Kris has had a total Glossectomy, coupled with a total Laryngectomy. So a double whammy. His surgery was in March 2012. We were told he would be dead within 12 months if we chose not to do the surgery. Kris is alive and well with NED. Would we do this all over again ? You betcha. Life is good. Truly, it is. Kris swallows all his nutrition, although it is in liquid form. He speaks. People without their tongues can speak. Kris manages speech without both a tongue and voice box. He is fit and active. We travel - with blender. Long International flights are no problem.
Best of all , Kris has been here to see all our Sons grow up. We now have 2 little Granddughters he adores.
Life is certainly very different from what we imagined, but it is good. I have met a suprising number of others who have also been through this surgery. All lead good lives.
Here to answer any questions you may have Marv.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
MarvB #196799 07-21-2018 09:41 AM
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Hi Tammy, I have to admire your husband. He certainly has been through a lot. I'm glad to hear that he's leading a good life now. He deserves it after what he's been through. I'm not sure what is different about my situation but, when two oral surgeons from different hospitals say they wouldn't recommend surgery and that they would not do it themselves, it makes me leery about the end results. As far as a total glossectomy, I thought that I might end up with one when I had my surgery and I agreed to it. And that was with one of the surgeons who recommended against this. I ran into another guy in radiation that had 11 years of being cancer free after having 60% of his tongue removed. His cancer came back and his surgeon recommended against surgery for him too. It was a surgeon I never heard of. His situation sounds just like mine ( location, depth etc. of the tumor) except for the 11 years of being cancer free. So, at this point, I'm going with the recommendation of the two surgeons and an oncologist. I have a PET scan in less than a week to see if it's spread. I can tell by how it feels that it's growing quite rapidly. It's starting to cause a lot of swelling in both sides of my chin and neck. It changes almost daily. To get to stage 2 in within 4 weeks of having clear margins is amazing to even the doctors.

Again, thank you for reaching out to me. It's nice to hear a positive come out of this type of situation.


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