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Thanks Wanda. Maybe he can wean off them soon then. Also, if you have any food recommendations for his first attempts (something that may taste good), please send them my way.
Debbie


Debbie, 53 wife and caregiver to Jim, 68, non-smoker, social drinks only. Stage IV SCC rt. tonsil. HPV+. Neck dissection 12/29/09. Peg inserted 2/2/10. Cisplatin and rad started 2/9/10. Carboplatin given 2nd round. 3rd round cancelled due to toxicity. Finished 30 rad treatments 3/23/10.
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When I finally started eating I was able to handle most things as long as they were accompanied by mashed potaoes and gravy. But the 1st thing that qualifies as "food" that really tasted good (much to my surprise as I was ready to spit it out immediately if it tasted as I expected) was won ton soup from the Chinese restraunt around the corner. After that my taste improved very rapidly.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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Typically takes weeks for the taste buds to recover and then it is gradual. So, it's not about tasting good now but the simple act of downing more solid food which is a victory in and of itself. As noted, apple sauce, jello, soups of any kind, eggs, and PANCAKES with lots of butter and suryp. Best to him on a faster than normal recovery.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Debbie,

I noticed my nausea going away in my 3rd week post Tx. Remember we all can be different but it seems a lot of us walk out of that Tx tunnel in the 3rd to 4th week post Tx. Things will S L O W L Y improve once he things the worst is over. He and you must be patient as the recovery can take every bit of 2 years with the 1st year being the most challenging. He should know when he's able to try solid foods again.


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.
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Some patients need to have swallowing tests. They can choke or aspirate. Thats why returning to the world of eating is something that should be done very gradually.

Funny, we all eat the same things. I used to eat won ton soup like crazy, not right away cuz it burned my mouth. But after several months post rad I was living on won ton soup, yogurt, pudding and applesauce. Unfortunately, Im still at that same level several years later but thats due to my own issues. Its unusual, most people are able to return to eating very gradually.

Best of luck with your husband trying to eat again. It will take lots of time for him to eat a tiny amount and it wont taste very good for a while. He will get there, the worst is over smile


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
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Debbie, congrats to Jim for getting through it all. The worst is over!

Reading these posts reminds me once again how different the course of treatment and recovery is for all of us. I was unable even to think about solid foods for at least three months after the end of Rads. I had no PEG and lived basically on Ensure clones for 6 or 7 months, gradually introducing things like watery oatmeal and soup.

I was also nauseated 24/7 for 3 months. Zofran did nothing and it was finally only Compazine that gave me any relief. Those were tough days. So don't put it away if Jim needs either!

As far as "recipes", I began with packs of Miso soup. Then I made myself a vegetable soup by boiling carrots and potatoes and a bit of onion with some veg bouillon. But I don't eat meat so expect you'll want something different. The main thing was making it soft and bland and letting it cool to near room temp.

Good luck to you both. He'll do fine!

The Other (or at any rate one of the others) David


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Congrats for finishing treatment. I am 9 weeks outs and am still eating soft foods. I am so afraid to eat anything other than pudding, applesauce..., However, I tried some shrimp today cause I was craving it, and it was so good and I was able to chew it and swallow it.


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
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Shrimp is good, but lobster is even better with all that butter. Also try a rare lamb chop, rare steak or prime rib. If you are still only on soft foods, no wonder you are still losing weight. Time to get some real food in you before you abandon that peg.

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
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The advice from Christine B. is the best! (as always!) My TX ended 6/20/08 & on 8/08 I tried to eat some cream of potatoe soup & almost died! I'm not kidding! I had a swallowing test done & found out that scar tissue damage from the rad. closed up my throat to the size of a strand of spaghetti ! No wonder I was choking on eveything I drank! So I needed 5 (in a row) gastroscopies done. The opening went from a 1 to a 16. (Most people I guess are @ 21) But with 16 I am able to swallow OK. The Dr. said I would need to have my throat "stretched" every 3 months...for life! X-ray are used during this procedure, so that was not music to my ears! As it turns out I was able to go 17 months before I needed another stretching! So this is why I agree with Christine B. Choking on that soup & not being able to breathe was one of the scariest things of my life!


BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"

*** Admin update --- Dianne has passed away on August 25, 2015 ***
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Also depends on the effects of the radiation. My Dx was similar to yours, although I did not have the neck dissection. After 35 RT treatments, when I tried to eat I would choke. My oncologist sent me to an upper GI doc. The top of my throat was closed to less than the opening of a straw by the scarring from radiation. I've been through six sessions (over eight weeks) to open my throat back up. After the fourth session I could finally swallow some real food without choking. I can eat now, but still small portions, small bites - lots of chewing...


Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.
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