| | 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 | Look I am not any kind of doctor but we have discussed this "no swallowing" issue many times since I have been associated with this site and it appears that the longer one doesn't exercise their swallowing muscles, the more prone they (the muscles) are to forget how to swallow. Add to that the damage that radiation can and does do to those throat muscles and the stage is set for some permanent damage to form. So if I were you I would get him to talk to some doctor he trusts that is knowledgeable in the issues we are discussing before it's to late. Absent strictures issues already preventing him from swallowing, I see no reason not to start and I see plenty reasons why he should start.
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: Jul 2009 Posts: 16 Member | | Member
Joined: Jul 2009 Posts: 16 | It's been quite some time since I've been on the boards...just keeping busy and trying to make things better. My husband is 8 mos post radiation and 3 months post RND and the swelling and mucous is still an issue. He tries to eat but it takes him over an hour to get thru a meal and by then he's just exhausted! Had the swallowing studies which came back fine but his tongue is difficult since they removed the hypoglossal nerve and he's not restricted in foods by spice only by texture. Last night even fish and mashed potatoes were difficult for him to get down. I'm wondering if this does get better as it seems that ever since his surgery the symptoms have been pretty consistent...the Dr's just say 'all is ok' and send us on our way! He gets so frustrated as he has to cough and choke his way thru many meals therefore using the feeding tube is still an integral part of our day!
Is there light at the end of this tunnel???
Jeani, caregiver to husband Art, 61 Dx left BOT SCC 9/08 peg 12/29/08 35x rad and 3x Cisplatin ended 2/22/09 Left RND 7/6/09 took everything and 4 of 30 nodes involved
| | | | | 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 | Jeani,
All of us find eating and swallowing post Tx to be different and how much so depends upon many many factors unique to each person and to their exact cancer and Tx. Taking more time to finish the same quantity of food we used to eat is certainly one of the challenges we all face. I found it helpful during this transition to supplement each meal with a can of VHC mixed with an equal part of whole mile just to make sure I was getting enough calories. I also picked foods that I was more able to eat, paying ZERO attention to the healthiness of the food. For me it was 15 months post Tx before I started to remotely enjoy eating again and I kept drinking the VHC well into my 2nd year of recovery and ALL I had was the concurrent chemo/rad. I am now 95% back to "normal".
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 2006 Posts: 93 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2006 Posts: 93 | My husband has also slowed his eating time.
Now it just seems everyone eats soooo fast.
It got easier for him to eat each month.
Just a little slower, lots of liquid.
caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I find the only way I can get fish down is with a bucket full of hollandaise or tarter sauce. Mashed potatoes need lots of butter and gravy. Baked potatoes are still impossible. And yes it takes a long time to eat anything. You need to concentrate on foods that have a lot of liquid in them or with them. Makes them easier to swallow.
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: Jul 2009 Posts: 16 Member | | Member
Joined: Jul 2009 Posts: 16 | Thanks so much...yes, he has had TONS more milk than ever before which is great! And Diet Coke works well too! I really focus on how much he consumes every day (which I never worried about before!) and try to keep it balanced...also try to watch the sugar consumption (cancer loves sugar) which is always the easiest calories to get!
Time will help, I know that!
Jeani, caregiver to husband Art, 61 Dx left BOT SCC 9/08 peg 12/29/08 35x rad and 3x Cisplatin ended 2/22/09 Left RND 7/6/09 took everything and 4 of 30 nodes involved
| | | | | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2009 Posts: 75 | Update: My dad's trach should come out in a week or so. He developed a infection in his lungs that caused the swollen vocal cords. Be aware everyone, his ENT claims this is very common. So, if you think anything feels a little funny in that area run don't walk to the er. As for the food issue. My dad had good luck with french toast from Trader Joes (in the freezer dept) with losts of syrup. Just make sure you cook in microwave not toaster. His speech therapist had him eating open face sandwiches on whole wheat bread (I guess it is easier to swallow than white bread).He seems to have gotten most of his taste back. Well I hope everyone has a great week and stays healthy!
Boston
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Boston,
That sure does sound scary with your father. I'm glad he seems to be doing ok..good think he was at the hospital. I agree with you, does this disease ever stop?
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:)
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