| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Ellen, hang in there! Keeping the weight stable is a big accomplishment. Keep up the good work! Good luck with the chemo on Friday! ChristineSCC 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 | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Ellen: I'll say a prayer that everything goes okay with your hubby's chemo Friday. Good luck with keeping the weight up - that's so hard, but it can be done, as you have read from other Forum members. As time goes by, and hopefully things get better, you'll have stories to tell like the funny one Cecilia told about her husband, Martin. Hope hubby keeps eating by mouth, even a little bit every day because it does strengten the muscles he uses when he swallows - that is so important. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I wanted to know everything that was about to happen and no bull from the Drs. That way I knew and didn't think about it but took it as it happened. I wanted to know for the simple reason, I didn't want to awake to any surprises unless it was something that happened while I was out in La La land.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jul 2010 Posts: 10 Member | Member Joined: Jul 2010 Posts: 10 | Whatever the doctors tell your husband to do as far as swallowing exercises, jaw exercises, Aquaphor on radiation site, salt/soda mouth rinses, etc. encourage him to do. I feel like that helped me come through my treatments in better shape. I drank lots of Ensure, Carnation Instant Breakfast, Boost, Special K protein, water, shakes, ate lots of ice cream and my husband made many trips to the grocery store trying to come up with things I could eat - I did not need a feeding tube because I was determined to eat/drink and not lose too much weight. Sometimes it took me awhile to get things down but I did it. Don't take it personally if your husband gets cranky when you encourage him to eat. I knew I needed to eat but I didn't feel like it and with my husband telling me to eat, it just reinforced what I didn't want to do but knew I needed to do. It helped me to know that I would still feel crummy at least 2 weeks after treatment ended.That way I wasn't thinking that everything would be rosy as soon as my last treatment ended. I was able to taste some food about 6 weeks after ending treatment. It will get better, just keep that in the back of your mind.
SCC on right tongue T2N1M0 Non-smoker, non-drinker age 55 female. Partial glossectomy April 2009,July 2009, Jan. 2011, lymph nodes removed, radiation & chemo 2009
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | To go the other way. I am still down over 70 lbs and my taste just keeps getting almost nonexistent. I force and do my best to get nourishment into this old body and then like a fool, go outside and work it back off. I have a good sweat going tight now from replacing gutter guards the storms took out. Now after another shower, I'll be ready to rumble. Good luck to your man and his caregiver. We at times just have to be hardheads.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | Thanks all. It is becoming very hard for my hubby to eat. He just detests the lack of taste. Going to try to keep doing Ensure. Shakes and any food that he will eat. I am getting to more and more like nurse Ratchet. I cannot imagine how awful his mouth is but do not want him to forget how to swallow.
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
| | | | Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | Wow Jim. You are a real trooper, your history is amazing. I think you are fantastic, not a hardhead. We are doing our best here and I am in awe of all of you.
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | For some odd reason, I enjoyed the taste of yoo-hoo during radiation. The cold drink felt soothing in my sore mouth and throat. It was as thin as water so I found it easy to drink. Give it a try, maybe your husband would enjoy it. ChristineSCC 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 | | | | Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | Christine, funny you should mention that because he likes drinks that are chocolate. I will try that, thanks.
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
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