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#57069 11-01-2005 01:09 AM
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Nelie Offline OP
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Thanks for the encourgement Pam and Amy. Pam, I guess I'm about a year behind you (treatment ended 6/3/05)so it's good to know there's a lot of recovery ahead of me! So far the soups taste pretty good, I think pretty much like they should, to me. The smoothy was another matter. I think I am still missing a lot of my sweet taste. I couldn't really taste the blend of fruit flavors like I used to--but I can taste some fruit flavors on their own so maybe its just a matter of time. Today I see the speech pathologist again and I'm going to check with him to be sure I'm doing those exercises right and see if there are any others.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57070 11-01-2005 04:41 AM
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Nelie,

I would say that my sweet taste is my big hold-out. This far out of treatment and sweets still don't taste right which rules out all of those processed foods I don't need anyway. Most of the time sugar burns my mouth - the only exception I have found is some cakes and ice cream. I can't swallow the cake without the ice cream to push it down but this didn't happen till just a couple months ago - a good year post treatment. Sometimes the sweet taste is OK for a couple of bites and then goes south pretty quick. I try to stay upbeat about it because all I have to do is look back to last year and realize I have come a long way. I think you are doing a little better than I was at this point because I remember last year I had a family reunion to attend the last weekend of October. Well, the week before I was determined I would go and be able to eat something, so I pushed hard to get something down for a couple of days and woke up on Friday with the worst pain I ever experienced throughout the whole ordeal. I had over-extended the jaw muscles trying to eat and by that afternoon one side of my face was swollen so bad I couldn't even talk. Needless to say, I couldn't travel and missed the reunion. I started over slowly after that,so please be patient and don't overdo it like I did. I have a few questions for the teacher in you - would you mind if I e-mailed you? Good luck with the speech pathologist today.

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#57071 11-01-2005 06:08 AM
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Nelie Offline OP
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Pam, Feel free to email me. Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57072 11-12-2005 12:52 PM
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Nelie Offline OP
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Update from a couple of weeks down the line. The second visit with the speech pathologist got me a reference to someone who does acupuncture for saliva which he believes would help (but, with an abundance of caution, he suggested I check with my ENT first) and he gave me some encouragement that I was doing the two swallowing exercises he gave me more or less right but I have still been very forgetful about actually DOING them a couple of times a day since then (I'm getting better).

I am still doing at least one bowl of soup or something else every day(today it's liquidy mashed potatoes with sour cream, turkey gravy and lots of extra butter--about as thick as I can do).

Meanwhile, my ENT, who I'll see for a regular follow-up this Tuesday, got the results of my barium swallow and apparently wanted to do a FEEST test on my swallowing to get a better look at what the problme might be. I remember someone else here said they had one of these. If you happen to be reading this, could you let me know what that involves? I haven't talked to the ENT directly, I was called by his assistant about this to see if I wanted to do it (I said sure--anything that could help).

What's mainly getting in my way lately (and in the way of everything else I want to do during the day) is I'm in week 5 of the breast radiation and fatigue has hit me in a really major way--hit at about week 3 and has just gotten worse. I wake up after 9-10 hours of sleep (although I can't sleep straight through because my dry mouth gets painful and wakes me every 2-3 hours) and I'm as tired as when I went to bed. I have to take a couple of 2 hour naps on top of that during the day in order to have any energy at all when I am up and even then there's just like this wall of tiredness I run into which makes me forget all sorts of important things like making myself swallow more......

MY RO warned me that this would probably be the case, especially since this is the second rad treatment I've had in 6 months. It's funny because he kind of gave me a lecture when I asked about fatigue as a symptom when we were discussing the oral rad about how no one knows if fatigue is a "real" symptom of radiation or is just a result of stress and a cumulative effect of other things such as chemo. But then this time around he told me I could probably count on feeling fatigued by the second rad treatment so I guess he does think it's a real symptom after all. Anyway, it sure feels real to me right now. Before it hit, this rad treatment was a total piece of cake and even with the fatigue its worlds better than the oral cancer rad with chemo and amifostine on top!

But I'll still be glad when it's over and I get SOME energy back.......

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57073 11-12-2005 02:51 PM
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Nelie, I watched my husband sleep most of the day and night for weeks during and after his radiation tx. He has finally gotten a good bit of his strength back. One of the things he is having alot of success eating is angel hair pasta with either a cream sauce thinned or tomato sauce thinned. The angel hair just slides right down. Keep going lady! 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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#57074 11-12-2005 03:07 PM
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JAM Offline
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Nelie, P.S.- John also eats Maruchan Ramen noodles-chicken flavor- several times a week for lunch. At first, after we cooked them, he cut them up into small pieces [in the bowl] with scissors. Now he doesn't have to do that anymore.


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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#57075 11-12-2005 03:43 PM
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Nelie,
One of the stupid things I did when I had radiation 8 years ago was to go to bed and sleep for most of the day, mostly because I couldn't keep warm any other way. Muscles atrophy very rapidly if not used. Talk to yout drs as to what exercise might help, but you need some. I suggest short walks in between the naps if that is what you need. You might also try some PT.

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
#57076 11-13-2005 03:14 PM
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Nelie Offline OP
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well today I'm running up and down the basement stairs to do the laundry. Does that count? wink

Also since we have had warm weather here lately I have gotten out most days and planted some bulbs (seems in a fit of "I'll be better by fall" I ordered over 100 daffodil bulbs last Spring in the middle of oral radiation/chemo). Those are all planted now and none too soon-there's upposed to be snow on Wednesday. I also take the dog for a walk (but sometimes a very short walk) at least once a day. I probably should be exercising more than this but honestly this alone is hard enough to want to do when I'm feeling bone-tired. I know you're right, though.

I'm also having major problems keeping warm. It seems like I get chilled really easily. I've been wondering if that could be the beginning sign of thyroid problems.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57077 11-13-2005 05:01 PM
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JAM Offline
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Nelie, what you just described sure counts a exercise in my book smile 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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#57078 11-14-2005 02:50 AM
Joined: Jul 2005
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Hi Nelie --

Have you had a thyroid test? You could feel cold just because you've lost weight and are not as active as usual, or you could have underactive thyrpoid. We were warned that this effect of radiation could "creep up" on someone, so they order a TSH (thyroid stimulating hormone) test for Barry when he has a blood draw, (which will be every three months for a study Barry's in.) Since he already has low thyroid function (not bad, but was taking lowest dose of Levoxyl) Hopkins is keeping an close eye on this. (And btw, he also feels cold more than usual, which seems to be due to body fat loss as his thyroid levels appears OK for now)

Everyone seems to concentrate on the really nasty early-appearing side-effects of radiation (for good reason!) but there is quite a bit on the OCF web site and in this forum about late-appearing issues, like thyroid impacts.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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