| | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) |  Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | David,
Glad you were there. Sounds like your approach, and questions, at least allayed some fears. I don't blame you one bit for the skepticism. Good job, and again, I'll say, another shining example of why this website works its works in the ways it does.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Aug 2007 Posts: 36 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 36 | It's very kind of you to help her. This kind of thing is what I find so frustrating as a caregiver. Part of our job is to glean and categorize info because the patient is too involved/upset. The other part is to constantly question everything. I found that most of the problems that occur within a major cancer center are communication problems and it's the caregiver's job to ensure that even the tiniest details have passed onto the right people. It's a very delicate dance.
I bristle when he was not given choices and was fearful about our ability to make the right decisions when he was.
My Dad increasingly gave me more influence over his treatment decisions which was a frightening responsibility.
They went down a list of side effects with Dad before he started and said likely or unlikely. They never said possible utter freaking NIGHTMARE! But I knew that already from here...And could only give him the info piecemeal.
Caregiver to father,Frank -Tonsil SCC spread to base of tongue 2 lymph, T2N2M0 stage 4a, IMRT 35x, Erbitux 8x-stopped after 5 due to thrush infection and strp infection in PEG,diag Aug 07 tx concluded Nov 8 07 PEG issues Inpatient Oct 8th-Nov 8th.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | David,
I don't understand the no mask part. I had XRT to the neck and head and had a mask. Mine was an unknown primary so they fried everything. My neck did burn at the end, but Biafine cleared that up after a few days. I also had a friend whose breast cancer mets went to the neck. They did biopsy hers and she was a smoker. Good for you for being such a good friend. Sounds like with this doc she is going to need one.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Well today they did make her a Mask ( and it only took a little over 2 hours from wet to clampable !! ). She then was told that she would get 6 weeks of accelerated XRT meaning 6 weeks of daily rads, Mon - Th and rad twice on Fri. When I taught with Dr Trotti last Thursday at Moffitt he told me that he had switched to Accelerated IMRT of daily rads M - T and rad twice on Fri shortening the 7 weeks of 35 rad Txs to 6 weeks and 30 rad Txs so perhaps a lot was changed in her treatment plan after her doctor talked to Moffitt??
She received the rad to the swollen neck side continuing to the center of her throat so I also have warned her not to be alarmed if her inside throat reaction is not worse than her doc told her. I also included taste and saliva loss in our talk. She took a few pills this am and actually did quite good although she did cry a little on the way home. She says she can do without me for a while so we'll see. I told her to call me every day.
Now back to my taxing world for a while.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | David,
I forgot it's your time of the year... suppose you'll be busy between now and mid-April, huh? Good to hear your friend is getting along well... I'm sure she's grateful for everything you've done. Has she gotten online yet?
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | John,
No, I guess that's my job. I have encouraged her but she's still in the overwhelmed stage. It's funny but I don't ever remember both the patient and their caregiver ever posting at the same time.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Are they going to be frying ALL her saliva glands? If so, I would suggest she take Salagen or equivalent to help preserve her salivary function. I did and do not suffer from a dry mouth. It is not as moist as normal but I have enough saliva to not be walking around with a water bottle, albeit it a little thick. Takes a little adjusting to determine how much you need and if you guys are in a humid area of FL she may not be able to take it. I would get 5 minute bouts of perspiring about a half hour after taking the pill. The only time I had a problem was when the humidity was about 100% with the same temp. But like evrything else, it affects all of us differently. Some can tolerate it and some can't. I think it is worth a try and if it bothers her, you just stop taking it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | David,, whatever happens with her, she will never have a better care giver than the one she has now. You make us proud by going from patient to care giver. What a guy even if he does have a turkey neck.. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | They are only doing one side of her neck and around to the middle of her throat so at least one side should be spared. I have made a note of the Salagen and will talk to her doc. Thanks for the suggestion. I have read about it before but only after I finished my Tx so I never went further with it.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Yes, I've heard salagen works better if started during treatment (I started immediately after). Definitely worth asking about.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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