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Anita210 #192093 03-25-2016 01:55 PM
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Also meant to give you my condolences for your husband's recent passing, Gloria.


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
Anita210 #192094 03-25-2016 02:32 PM
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Dear Anita, thanks for your kind thoughts. I hope things will start to look up for the two of you once the PEG is back in.


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.
Anita210 #192159 04-02-2016 09:17 AM
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I had an NG before inserting a PEG tube my first and second fight (Ten years ago). I remember the NG not so much hurting (In my mind at the time I was saying that it burned, etc.), but I believe in hindsight it was just something new to me and took an adjustment period. As far as your question we can all walk the same path but our footsteps land differently, if that makes sense. It is really strange how these miracles we call bodies act and react so much differently to the same treatments but that's just how we are built. I quit thinking about that and focus now on how I can best adapt to work with my body instead of against it. Sounds like your husband gets that which is a win! Prayers and all my best!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Anita210 #192184 04-05-2016 02:47 PM
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Last Friday the new PEG tube was successfully installed.
So now back to the battle to try to put on some weight. And recover from the pneumonia.
But I know, now, that it is going to be a continual cycle....this aspiration pneumonia.

Sometimes I think to contact his radiation oncologist from 10+ years ago...who I loved. I wonder if he (and others in his field) even know how patients are suffering down the line from the treatment.


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
Anita210 #192187 04-06-2016 04:51 AM
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Anita,
I have been mentioning the devastating long term effects to every doctor that my husband sees, including his Radiation Oncologist. I want them to be aware of what these patients go through. They say they know, but they don't live with it on a daily basis. Evidently, this is due to more survivors with current tx. options and HPV-positive tumors.

I also have recently noticed less smooth swallowing. Our immediate issue now is early stage ORN.

I am frustrated that there is no longer a team or physician in charge. We are left on our own to figure out what to do and whom to contact.

Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
Anita210 #192188 04-06-2016 06:48 AM
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Lottie,
Good point about the lack of a physician in charge of post treatment issues. GPs are in no position to deal with the complicated issues.

When my husband had his last appointment with his ENT and Radiation Oncologist (I think it was at 2 years out from treatment) I asked them if there was anything to be aware of as time went on. The RO said the only thing was an increased incidence of lymphoma at 10 years out from treatment. That's it.


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
Anita210 #192191 04-06-2016 08:55 AM
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Lottie and Anita,

I agree fully with what you are saying. In addition to the swallowing difficulties, John was starting to lose his hearing, as well, he struggled with postural hypotension, not to mention the dental problems that were starting to manifest themselves. The only solution we were given for the swallowing problems was to put him on a feeding tube for life, which, of course, given his efforts in getting his esophagus opened, John fought back and would not accept it. As for the hypotension, he was prescribed steroids for a while but that did not help. What's hard was the steroids had long term side effects of their own. It seems to me that when it comes to late onset side effects, we are dealing with, at best, a patchwork approach.


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.
Anita210 #192192 04-06-2016 11:04 AM
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No member of my "team" understood post-treatment issues. And seeing some them afterward (one by one) was of little to no help. In this world of specialists, I guess we need one more, which would be a doctor who specializes understanding post-treatment issues and how to handle them.

Regarding postural hypotension, I assume you were given Florinef. There are other medications, and this is all best handled by a cardiologist. Because the first thing to try is graduated support hose (via prescription). There are also drugs like Midodrine and Desmopressin. Neither of which should be prescribed trivially.

What I ended up doing (with my cardiologists blessings) is adding sea-salt to a pitcher of water. One teaspoon per 2 liters. And monitoring my blood pressure (lying, sitting, standing) twice a day. I became worried that my blood pressure was getting too high, so now I only do this in the first pitcher of the day. I'd go back to the cardiologist again, but other illnesses keep taking priority. Eventually, though. Because this is helping very little, and near-syncope is no fun at all.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
Anita210 #192195 04-07-2016 05:59 AM
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Andrew, it was suggested to John to dissolve half a chicken broth cube in water and drink it once or twice a day if his blood pressure got too low. It worked for a while but over the long term, it wasn't that helpful. My biggest fear was John falling when his blood pressure got too low. With all the chemo and radiation, it would be very hard for any broken bones to heal. Unfortunately, it did happen and it brought back the pneumonia.

You're right, he was on Florinef.


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.
Anita210 #192215 04-11-2016 04:18 PM
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I passed my swallowing test, at least at the time it was given (8 years ago). But I've actually felt myself start to inhale food. What I noticed is I have to be very attentive while eating, because unless I use water to assist in swallowing food, the food sometimes just stays on the back of my tongue and doesn't go down.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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