#46669 04-10-2006 01:52 PM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Kerry, My husband was much like yours going into the treatment. He is 6'2" and pre-diagnosis weight was something around 148. At 3 years post treatment, he is now at 142.
Is your husband being monitored by a dietician? For these skinny guys, it is especially important. Also, there are may liquid foods for the feeding tube that can be explored. I know that just after treatment the dietician moved my husband on to a product that had pre-digested proteins because it was determined that his treatment-traumatized body could no longer break down complex proteins.
The taste stuff will go away over time. The important thing right now is for him to get adequate nutrition in whatever way works.
We're all pulling for you, Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#46670 04-10-2006 03:36 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Kerry,
I went with the "food is medicine" approach for several months (I didn't have a tube, so I was relying on everything by mouth, even when it tasted awful and my mouth was burning all the time). I started with basic frappes, but then added different kinds of fruit and other ingredients to try to get more calories and nutrition. I also ate things like cold or warm (but not hot) soup, cream of wheat, all sorts of baby food, instant breakfast, and anything else that was soft and mushy enough to swallow. Your husband needs to get his daily intake needs however he can -- by mouth or by tube -- but if he's going at least partly by mouth, he needs to recognize that the taste buds won't be back for awhile (but they do come back).
I also remember asking the same question he is asking -- "how do people do this" -- but my radiation oncologist reminded me that I was only 39 and had a lot to live for. (By the way, I'm now 56 and very glad I didn't give up part way through the treatment.)
Try to take just a day at a time rather than focusing on how many weeks of radiation he has left. Also, please be sure there is someone at the hospital who is helping to track his status with nutrition.
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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#46671 04-10-2006 04:26 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2005 Posts: 306 | Kerry - There is no magic to this that I know of. He has to eat. As he loses strength and weight, his symptoms get worse. As his weight goes up and his fluid intake goes up - his symptoms will decrease. How do people do this? They force themselves to eat - just like they force themselves to go back into the chemo room each day, and back into the radiation room each day. This has nothing to do with 'tastes good' - this has everything to do with "Feeling Terrible".
Please read him this message. How do people do this? They eat, and they eat a lot. It all tastes like tin foil, and they eat it anyway. They drink 3 or 4 times as much water as they think they can - and they actually feel a bit better.
You lose too much weight - you cannot finish the treatment, and you know where that leads. Lots of people beat this disease. You can too, but it isn't easy and it doesn't taste good. Drink high calorie nutrition drinks and get your calories in a hurry (yes, they taste like foil too). Don't worry about taste - be glad you have the ability to taste - it does get better.
You can do this. Get mad. Drink the Ensure. Drink the water. Don't let the beast win. Be strong. Tom
SCC BOT, mets to neck, T4. From 3/03: 10wks daily multi-drug chemo, Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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#46672 04-10-2006 05:29 PM | Joined: Feb 2006 Posts: 115 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2006 Posts: 115 | Hi Kerry. Although I admire Tom's resolve and wished during my husband's treatment that he would attain that same attitude, very soon after he started, he would not eat anything, and we had "words" about it. I felt as you, that even though it didn't taste right, he should try to eat anyway, as nutrition was imperative to healing, and he retained his ability to swallow. After awhile, I accepted that due to the nausea and the taste issues, taking in anything to any degree other than water or ice was not going to go well, so we focused on just using the PEG tube to take in nutritional supplements (first Jevity, then we went to Boost Plus because of higher calorie content within 8 ozs., plus I would add Whey Protein into it for additional calories and nutrition). Also, the feeding issues became less of an emotional battle once my husband started taking an anti-depressant (Zoloft). This helped greatly with his attitude to keep at it. He still had and still has challenges with keeping weight on, but we have dealt with them more peaceably than when he started out. There were times I wondered as well how on earth my husband could make it through these treatments, but to be honest, he made it through the treatments better than I anticipated, even with the nausea issues he had throughout.
Just don't look too far ahead, as it creates anxiety. You will find that you adjust each day to whatever it is you have to deal with at the moment, and then all of the sudden, it is the next day, and then the next. Try to consider each day of getting through treatment as a step forward, no matter how challenging that day may have been. I know it's easier to say that now that my husband has finished his chemo-radiation treatments, but we still have challenges ahead with surgery scheduled for this week, so I will try to remember to practice what I preach! Take care and best wishes for your husband's complete recovery. Michele
Michele, caregiver to husband, Jesse, SCC diagnosed 1/5/06 unknown primary, lf neck mass >6 cm. Chemo (Cisplatin 2x; Carboplatin & Taxol 2x) & XRT radiation 39X ending 4/4/06. Rad neck dissection 8.5 hrs 4/13/06. 30 HBO treatments Fall 2006.
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#46673 04-11-2006 03:10 PM | Joined: Mar 2006 Posts: 99 Senior Member (75+ posts) | OP Senior Member (75+ posts) Joined: Mar 2006 Posts: 99 | Thank you so much all of you. Your words and just knowing how much you all understand what were going thru are true therapy for us. You just feel so alone sometimes, and we have a huge support group of friends and family, but I dont think people can really understand what its like. I had my husband read the posts and it has given him hope and comfort to know he's not alone...God Bless And Michele, all our best with your husbands surgery. Hopefully it will seem like a breeze compared to what he's been through...All our best
Kerry
Kerry/wife of stephenm StageIV - Base of Tongue T4N0M0 XRT x42 / Taxol and Carboplatin x4 Tx. Finished 5/08/06
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#46674 04-11-2006 03:48 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 | Kerry, Michele and Tom's posts was so good.{and pretty much summed up both sides of this experience.] John and I have had lots of "words" also while I watched the weight melt off of him. Something that has helped us are the 100's of pages I have printed from this forum dealing with the particular stage he was going through. As he started reading what other people were doing and how they were feeling and coping, it has given him more incentive. Plus, it helped that I was not the only one urging caloric and water intake! Your being his advocate will help him improve so much faster. 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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