| | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) |  Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Pete,
Have you ever had your throat dilated?
I'm not sure exactly when it started, but my throat completely closed up last March, 17 months post Tx. I mean completely - no water, mashed potatoes, pudding, or ice cream - absolutely nothing. It all tried to go up into my nose or down into my lungs. I was admitted into the hospital, and that's when I met my gastroenterlogist. He dilated my throat and I was able to swallow that evening.
He said that the throat constriction can first start as long as 2 years post rad. He couldn't dilate me all the way in one shot because it was SO constricted (didn't want to tear it), so I had it done twice more, each a few weeks apart, until it was of "normal" size.
I was having trouble swallowing again lately, so I just had my esophogus dilated again (4th time) and again Blessed relief. It doesn't solve all my eating problems, because I still have tongue stub, dry mouth, and no teeth issues, but the difference is incredible.
It's no problem to have done, either. Mine is done in the Doc's office under anesthesia. Go to sleep, wake up, It's done. And that night you're swallowing like a champ. There is no sore throat or anything either. You feel just fine.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Lani, I've been considering doing just that, although I didn't realize the Gastro-Doc does the work -- Did you do a self-referral or was it done by your cancer Doc?
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Pete, I was admitted into the hospital because I couldn't swallow anything at all and needed to be fed and hydrated by IV. He just showed up at my bedside the next day, so I guess the hospital Doc-in-charge called him in. Since then, my disability Medicare became effective. I chose Humana Gold (with Medicare) to manage my health care, so since then it's a referral from my Primary Care Provider - everything's supposed to go through her now. That hasn't been a problem for me because she's very easy to get along with and doesn't question anything I need. Before I signed with Humana I made sure that they would have no problem with all cancer-related issues going through Shands too. That was a deal-breaker for me, and so far,so good. I don't know, but probably ENTs would also do the procedure. Check with your PCP, or your cancer Doc should be able to help out, too, if you need a referral. Maybe you could just call on your own, though, if your insurance allows it. Gastroenterologists take care of the whole "gastro" thing top to bottom - esophogus, stomach, and on to that colonoscopy we're all supposed to get. (So if you go in to have your esophogus dilated, don't let them tell you to strip from the waist down.)  Do this. I promise you'll be thrilled with the results. Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I have a call in to the nurse practitioner on my cancer team (Along with Dr Haakenslash and the Cutthroats; good name for the OCF official rock band!) to see. Rather get it done on this side of Puget Sound as it's more convenient for me.
This is a banner year for me, what with two CT, one PET and one MRI, cancer surgery, colonoscopy and enlarged prostate treatment later this month (I am pushing the extra stuf because I have already met my out-of-pocket for this year!). Might as well have my throat messed with on the inside as well as the outside...
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Pete, Well since you already had the colonoscopy, you'll get the throat done and you'll be clean & clear, through and through. Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | 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 | Yeah Pete, get the whole tuneup and be done 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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I also had the PEG in and out about five times (once by Doc and the others by me), so even the middle of my system has been affected. Even had a couple of fillings done this week at gum line!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Pete...I love you comment. It made me laugh out loud. It does seem like a good idea at the time doesn't it?
Elem,
I wish your husband luck on his surgery. Let us know how it goes.
Suzanne
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2008 Posts: 7 Member | | OP Member
Joined: Aug 2008 Posts: 7 | My husband has also decided to give up the fight after nine years and many surgeries and hospitalizations. He has fought with radiation and chemo. He has had a total glossectomy, he has a trach and can not speak. He has a feeding tube and now has difficulty hearing. He just wants to be comfortable and surrounded by his loved ones. Hospice has been wonderful and I feel we have made the right choice for us. It may not be right for everyone. He is resting comfortably in a hospital bed in our living room and not spending his days being prodded and poked. | | | | | Joined: Aug 2008 Posts: 7 Member | | OP Member
Joined: Aug 2008 Posts: 7 | It is a personal choice and no judgements should be made. No one said this was an easy choice. Watching my husband decline everyday is the hardest thing I have ever done. I was a nurse for 20 years working in Nursing Homes and I have seen families in pain no matter what final decisions they made. | | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
