Previous Thread
Next Thread
Print Thread
#147734 04-03-2012 02:47 PM
Joined: Apr 2012
Posts: 3
Pam1961 Offline OP
Member
OP Offline
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.

Pam1961 #147738 04-03-2012 02:59 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
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!


Christine
SCC 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 smile
ChristineB #147751 04-03-2012 06:32 PM
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
Offline
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
walknlite #147757 04-03-2012 07:58 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"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
Cheryld #147770 04-04-2012 01:08 AM
Joined: May 2010
Posts: 638
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
Offline
"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 smile.

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 smile
Still underweight
klo #147776 04-04-2012 07:29 AM
Joined: Nov 2009
Posts: 493
Platinum Member (300+ posts)
Offline
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.
ChristineB #147891 04-06-2012 08:38 PM
Joined: Apr 2012
Posts: 3
Pam1961 Offline OP
Member
OP Offline
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 ??

walknlite #147892 04-06-2012 08:39 PM
Joined: Apr 2012
Posts: 3
Pam1961 Offline OP
Member
OP Offline
Member

Joined: Apr 2012
Posts: 3
Thank you for the "welcome".


Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,916
Newest Members
TZwicker, Mareea, Crzyborgs88, Chevymudnut, Charlsena
13,222 Registered Users
Forum Statistics
Forums23
Topics18,209
Posts197,040
Members13,222
Most Online614
Jul 29th, 2024
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5