#56812 08-19-2005 09:34 AM | Joined: Jun 2005 Posts: 15 Member | OP Member Joined: Jun 2005 Posts: 15 | I am new to this site, visited two or three times before. I had 33 rad. treatments two months and one week ago. I thought that I'd be eating by now, I am sooo depressed and I'm sure that my husband must be tired of seeing me cry. I can eat mashed potatoes, fruit and sample other things but it doesn't taste right to me.I can only handle a few bites and I get a very slight taste of these things( a resemblance of what they should be like) but it's usually awful with a bad after taste lingering in my mouth. I can't taste 'sweet' at all, that's why I can't do milkshakes. They taste bitter to me. Will anything ever taste good again? Will I ever look forward to a meal? Will I ever go to a restuarant and thoroughly enjoy my food? I'm getting more depressed by the day. I used to love to cook and prepared big meals during the holidays.I was so proud of myself and everyone loved my cooking. I don't want to have to cook just from memory, I want to try new recipes someday and I want to be able to tell if there's to much salt or to much garlic, will that be possible? I'm barely surviving on boost and ensure now. I'm tired of forcing the drinks down just to survive. One of my favorites used to be a nice hot cup of tea in the morning, will I be able to enjoy that again someday or is it just a thing of the past? Please be truthful yet gentle with replies, I need something positive to hang on to or look forward to right now. I'm going to the doc's next week and I'm going to request an anti-depressant. I'm dealing with all the other issues of the rad like mucous, dry mouth, sores and burning sensations and all that but being denied the pleasure of food is getting to me. Will it get better???
unknown primary, one node,left neck radical dissection, 3 chemo, 33 rads. treatment ended 6-15-05
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#56813 08-19-2005 10:11 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Barbara Well I missed the rads, but i have lost a quarter of my tongue and half of the back of my throat, one year out I can just taste some sweet things, now I hate chocolate, (maybe a good thing) but my taste for savory things is back and i enjoy, garlic, salted nuts and crisps, (sorry chips to you) and if you have been reading my posts red wine tastes good, but coke not so good. So my advice enjoy what you can the rest will come with time, (yep I know none of us here has patience) Sunshine, love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#56814 08-19-2005 11:21 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Barbara,
The rule of thumb that you will see here a lot is that it often takes a month of recovery time for each week of radiation you go through, and many of us can attest to the fact that it took us several months to begin to see some improvement in tasting, swallowing, eating, etc. The things that you're eating right now are pretty consistent with what I was eating around the same point in time as you (and they still tasted terrible to me at that stage). I know it's very frustrating while you're waiting to be able to enjoy food again, but the taste buds do come back and you can plan to enjoy food again! In the meantime, please continue to focus on getting the nutrition and hydration you need to help you get better.
Are you being treated at a major cancer center? What type of cancer did you have? Did your treatment include any measures to preserve your salivary function? Please keep us posted on how you're doing -- there are plenty of us here who can identify with what you're going through.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#56815 08-19-2005 03:22 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Barbara, One of the best parts of our marriage has been the time my husband and I have spent together in the kitchen-up until this cancer appeared. He had surgery to remove the tumor and all but 5 teeth, a bilateral neck dissection and 30 RAD tx's. This started in April and the last RAD was July 8th. He's lost 24 lbs. to date, ]but he wasn't heavy to begin with] We experiment daily with all kinds of foods to see what will taste good to him. And we have pitched alot that did not work. He loves spinach-canned or fresh steamed- sauteed squashes in lots of olive oil and garlic, pasta -cooked past "aldente" with lots of creamy cheese or Alfredo sauce- The 1st few weeks none of this tasted good to him, but now it is. Last week he tried blackberry wine and said it was great[he used to be a beer and scotch man, so go figure] It's so hard to have your brain remember and want a certain taste, yet not be able to capture it. Just keep trying things. And remember, everyone's taste buds are different anyway. Have you ever had an experience where you put the perfectly seasoned dish in front of "Uncle Harry" and he immediately [without tasting] poured a tablespoon of salt over it? Hang in there  Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#56816 08-19-2005 03:25 PM | Joined: Jun 2005 Posts: 15 Member | OP Member Joined: Jun 2005 Posts: 15 | I just wanted to add that although I don't understand all the abbreviations here..I had a left neck dissection, 24 nodes removed, ca found in 1. The primary source was never found although they suspect the tonsil. I was stage 1, diagnosed March 2005 and finished treatments June 15, 2005.
unknown primary, one node,left neck radical dissection, 3 chemo, 33 rads. treatment ended 6-15-05
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#56817 08-19-2005 04:13 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2005 Posts: 497 | My eating has come back pretty quick but my treatment was different than yours I am sure. I just started talking day before yesterday again.
I find many things have no taste, green beans, salad and salad dressings, ham, chocolate, coffee, tea all taste like nothing. Milk has no taste and neither does pasta dand potatoes. Salt is enhanced and I will never need the shaker again. Ice cream has a slight taste and thinking of beef makes me ill. I guess I will take it one day at a time and see what changes and what doesn't.
Hang in there. It will get better as you get better. Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#56818 08-19-2005 10:43 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | My taste has completely returned to normal. Even sweets are good again. It was a phase in process, salt being the first to return and sweets being the last. Keep experimenting with diiferent foods and tastes.
One other note, that even with most of my salivary function back, too much salt will cause evening dry mouth, so go easy on the salt.
You WILL thoroughly enjoy your food again. For me it was one of the worst side effects of the treatment.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#56819 08-19-2005 11:28 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | Barbara, it certainly will get better, trust me. I had more treatments than you and I just received the tradiational radiation but I could eat at any restaurant with my friends. Of course I am not as lucky as Gary because the sweet taste has never come back but it is good for my teeth. Chocolate still tastes chocolate only that it is not as sweet as expected. I never lost my appetite and my friends always said that I eat much more than they. Most food to me tastes the same as before but some dry food like bread or meat needs water to go with. As for spicy food, it is still a great challenge but I don't miss it anyway since there are a lot of choices. Hang in there, you are only 2 months post treatment. Anti-depressants can help a lot if you feel depressed. I have taken these for over a year after completing the treatment. But don't expect quick effect because it usually takes about 2 to 3 weeks to feel they are working on your body.
Karen
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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