| Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Thanks Charm, now she's gonna get that!
Re the dry mouth, don't wish for something you don't want. Believe me again it will come and very soon now.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | David & Angelia
Oh, if only the premise behind "The Secret" and your last posts were true. Then we could just attract the universal energy and cure the cancer without all the messy radiation & chemo. Still just like monitoring your radiation TX is a good idea, getting vetted for swallowing is good also. The MBS is painless and the only way to truly tell where something goes. Once again though I am struck by David's masterful way of gently chiding while still making me smile. Awesome talent Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | No, I am not gonna get that. That is one thing I do not want and will not get.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I have no been on in awhile, been a rough few days. I have another qustions about swallowing. I have noticed that when I swallow not all of the water goes down, some of it goes up. Is that common? Or is that one of those rare things that I just happen to get, because we all know that I am a rare breed and will get anything that could happen.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angelia
Relax, its perfectly normal. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Angelia, I've had just about every variation of swallow problems imaginable, so I feel your discomfort! First, my speech therapist told me early on that you often don't know exactly when things are making their way down your throat. In my case I often felt that stuff was getting stuck down there. She said that the throat often feels a kind of phantom sensation of material even after it's gone down all the way. (you didn't specifically mention this but thought I'd bring it up anyway)
I too experienced the down/up thing and I know how disconcerting - even frightening - it can be. As others have said, you will get past this... however that being said, if you're really having a lot of trouble you might think about getting a video esophagram (I had one) to determine exactly what and where the problem lies. Like you I often had the feeling I was sending things down the wrong pipe and in fact I might well have been - small bits of water only - based on what the esophagram showed.
Next: in my case (and I'm hoping this is rare) I had a web growing across my esophagus - twice - which along with the radiation damage (temporary) to my swallowing mechanism made it impossible for me to swallow anything other than liquid for awhile. I had two endoscopies to remove the webs and thankfully they don't seem to be growing back.
Third is the possibility of esophageal narrowing, something I believe many of us suffer from. That's something a GI doc can assess through endoscopy, maybe you've already been checked out. In many cases (mine included) a series of dilations is necessary to stretch the esophagus back to normal. Thank god for propophol.
To repeat myself, but it bears repeating, you will overcome these things. As David El Primero said earlier, the dry mouth is more or less inevitable, alas. Oh well.
Courage! David El Segundo
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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