| Joined: Apr 2012 Posts: 3 Member | OP Member Joined: Apr 2012 Posts: 3 | Hi.My name is Pam and my father was treated for cancer of the paratid(sp?) gland and vocal chords. He received radiation and chemo. No surgery was done. He is now cancer free which we are so thankful for. My question is regarding healing time. He had treatments 2 years ago and still cannot eat. He had a stomch feeding tube for a long time but that is out and now he drinks liquid meals only.
He has very little saliva and no lower teeth.
Wondering if anyone else has had similiar experiences. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Pam. Welcome to OCF! Congrats to your father for finishing his treatments and now being 2 years cancer free! I know all too well what having a feeding tube is like. Your father should have a swallow test done to determine if he is physically able to swallow. Then it can take months of slow progress to regain his ability to eat again. It can be done so I hope he will give it a try. But he must seek out a dietitian to first do the swallow study so he doesnt aspirate.
By the way, I dont have any teeth at all. Mine were lost due to radiation damage.
You and your father are among others like himself now. We have many similarities! ChristineSCC 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 | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | SO glad that he is cancer free for two years. It has also been two years for me, and I still have dry mouth. I wish I could be of assistance, but Christine gave you great information about getting a swallow test done. Welcome to OCF!
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | So glad your dad is doing well what you've described is common, radiation has many side effects - particularly stiffening of the muscles and tissues, a therapist should be consulted, and acupuncture may help as well. Good luck and welcome.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Pam My Alex is in the same boat. We have just passed our 2 years since diagnosis mark and about 18 months out of treatment. chemotherapy followed by chemoradiation finished in August 2010. PEG came out in May 2011. Like your father, Alex has almost no saliva and minimal teeth(getting less and less every month) It was the speech pathologist who ordered the modified barium swallow to check Alex's swallowing function. His function is damaged either by the tumour, the chemo or the radiation - we are not sure. After 2 years, he is still on nearly all liquid feeds (Ensure Plus). Initially, we were made to feel by the RO that Alex's lack of swallow and refusal to eat was somehow his fault and due to lack of will or dedication but our speech pathologist reassured us that this is not as unusual as the RO inferred. Given what Alex has endured, this is not really such a surprise. Now, whilst Alex is not as diligent in his speech exercises as I would like, he has a better chance of flying than being able to just "suck it up and get over it" as one physician suggested just before he had strips torn from him. Alex has a physical issue with swallowing (sorta like the swallowing sequence is out of kilter and one of the steps is completely missing) that does not seem to be improving in any great rush, so he is resigned to very slow progress, one step at a time. My suggestion to you would be to ask about the barium swallow as others suggest, and then if there is a physical problem preventing your father from enjoying his food, support him, and protect him from the well meaning but really annoying people who think it is a matter of trying harder. And make sure you are not one of those well meaning but really annoying people as I was . Alex makes a good point when he rants about the WMBRAP - "do they think I have lost my mind as well? How is it that they think I am so stupid that I haven't considered (insert obvious soft food suggestions here) already?"
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Yeah. It's an ongoing problem, and very frustrating, as well. Some of us are able to eat much sooner than others, and others, not so much. I still have issues and I am nearly three years out. I used to love to eat and to cook, but that's no fun anymore. Good luck to you and your father. It's a long hard road, but two years is great, try to keep up your spirits!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Apr 2012 Posts: 3 Member | OP Member Joined: Apr 2012 Posts: 3 | He had a swallow test that revealed some "leaking" when he swallows. He doesn't give detail when relaying info to us so I'm uncertain if he was told it would heal ?? | | | | Joined: Apr 2012 Posts: 3 Member | OP Member Joined: Apr 2012 Posts: 3 | Thank you for the "welcome". | | |
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