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Old 08-17-2010, 12:21 PM   #1
jml
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Difficulty with eating/swallowing

Hi Friends~

Wondering if anyone has experienced difficutly with eating and swallowing - it's very bizarre.
It doesn't seem to be associated with anything, except this is the 1st time in my 8 years of treatment that I've ever experienced this.
My taste buds seem to be okay - things taste the way they're supposed to - but I just can't get past about 4 or 5 bites of food before I start fighting the urge to regurgitate. Often I can grab and glass of water and wash everything down before anything comes up & out, but it is really awful. But then I just give up, not able to eat enough to fill me up. I've gained about 4 pounds back since my lowest weight, but I'd lost 20, so I have a bit to go.
When my mom was here she was really helpful keeping me on schedule and not waiting so long to try and eat again, but now that I'm on my own, often I don't realize that those hunger pains mean it's time to eat again.
I am able to drink Smoothies, but I don't always have access to those.
Any ideas?
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Old 08-17-2010, 02:02 PM   #2
BonnieR
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Re: Difficulty with eating/swallowing

Sounds like you need to see your doctor to evaluate what else might be going on. Could be totally unrelated to cancer. We do get other ailments. Meanwhile maybe you could have a supply of Ensure on hand, the canned nourishing beverage.
Have you taken Compazine?
Hope you see the doctor soon. Keep the faitn
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-17-2010, 03:28 PM   #3
Carolyns
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Re: Difficulty with eating/swallowing

Hi JML,

I agree that it would be a good thing to tell your doctor.

I am on Ixempra now and have the same problem. I find that I have to have small portions of really good food that I like to eat in the house. I go to a small boutique style market and buy small portions of things that sound good to me... and easy to put together myself. I buy this yummy small portion of chicken salad and have crackers on hand... hummus and cucumbers work for me. Anyway, I guess what I am saying is that if I don't eat small portions often then things get out of control so I must have things on hand because I am alone with my 12 year old son. I always accept offers from friends to come over and eat with me... they will ususally pick up anything I want. For me not being alone makes it easier to eat.

I hope that you find the answer to your problem. I have never had issues eating but I find now that I think about every aspect of food before eating it and my throat closes and catches food for no reason... kind of strange. I have to eat at the moment the mood stikes and then force myself to do so when too much time goes by.

Good luck to you, Carolyn
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Old 08-17-2010, 04:58 PM   #4
jml
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Re: Difficulty with eating/swallowing

Thanks Bonnie for your response. I mentioned this to my doc about this, but I don't think I was very clear or specific, so we talked about consulting with the Nutritionist. I do take Compazine as well and it does seem to help.

Carolyn - you are exactly right about the throat closing and catching for no reason. And it does seem that if I wait too long to eat, the response is worse. I usually find that I can get breakfast down, but that's likely because I know as soon as I get out of bed that I have to prepare food before I get too hungry.
I'm also often surprised that it's time to eat again and find myself just dreading it. The main motivation to eat is to just get rid of this awful empty stomach/hunger pang feeling.
I'll keep you posted if I learn any new techniques or ideas from the Nutritionist.
I hope you're tolerating the Ixempra well and more importantly, I hope it's doing it's job.

It is just comforting to, as always, to be able to post here and find support from friends, so thank you.



Take good care~

Jessica
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Old 08-17-2010, 05:09 PM   #5
BonnieR
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Re: Difficulty with eating/swallowing

It is interesting that you find yourself dreading eating, like sort of an aversion reaction is setting in. The more you anticipate it, the worse it gets. A vicious cycle.
Is there something new in your life that would account for this? Is it related to new drugs or treatment?
Maybe a short round of anti-anxiety meds would help get you over the hump. It must be comforting to know Carolyn understands. That is what makes this site so valuable!
Let us know what you find out. Keep the faith
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-17-2010, 05:15 PM   #6
sassy
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Re: Difficulty with eating/swallowing

During treatment there were many times that I would be eating, ready to swallow and everything would just stop--sort of like you describe with your throat closing up. I would very often come close to choking. I would have to mentally walk myself through swallowing. The best way I could describe it was that I would forget how to swallow half way through.

This got better after treatment was finished, but every now and then it still happens.

Sorry to say it never stopped me from eating---it might have been better for me if it had!
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dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 08-17-2010, 05:16 PM   #7
Carolyns
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Re: Difficulty with eating/swallowing

I have noticed that Anorexia is a side effect for many of the meds I have taken and I have never understood it. I can tell you that I can almost get OCD about food. I think about the texture, taste, smell and what will happen to it after I swallow it. I have NEVER been like this. I could eat anything at anytime no problem.

Who knows? My doctor just says that I must keep the pounds on.

Thanks, Carolyn
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Old 08-17-2010, 05:50 PM   #8
BonnieR
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Re: Difficulty with eating/swallowing

I recall from my old nursing school days that the single word "anorexia" simply means lack of appetite. Which is probably what the SE is referring to. The actual eating disorder is called "anorexia nervosa" but everyone just uses the abbreviated version which can be misleading.

SO maybe revulsion towards food is some kind of side effect of a medication you take?
I know that after taking Ambien for awhile, I got terrible urges to do "night eating". Could not control it. Amazing the effects drugs can have on us
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-17-2010, 05:57 PM   #9
jml
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Re: Difficulty with eating/swallowing

This is also a very new situation for me. I've always had a completely normal appetite, and like most women always watched what I ate, and never felt this way.
I guess it started around the time I began Ixempra. And for all these months my taste buds have been off, or nausea, or whatever. But now as everything has normalized & I've been off Ixempra for a month and just started TDM1, and it's started again. This never occured on any of the other treatments I'd been on in the past 8 years.
I've thought about taking an Ativan before I eat, but haven't tried that yet.

It's a very confusing thing and I'm so grateful to have you guys weigh in on the topic!
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Old 08-17-2010, 06:06 PM   #10
BonnieR
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Re: Difficulty with eating/swallowing

It really does sound confusing and distressing. I hope you both can get some feedback from your doctors. This is a real QOL issue.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-18-2010, 05:31 AM   #11
Lori R
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Re: Difficulty with eating/swallowing

Jessica and Carolyn,

Not a lot of specific answers but a few thoughts for you to consider.

When I was first diagnosed I immediately lost 10 lbs. This was disconcerting as my weight had not varied by more than 2-3 lbs for 20 years.

So....

**I went to a nutritionist - Find one that deals specifically with cancer patients. My onc referred me to a good one. This nutritionist taught classes at the University Medical center. I felt like I was dealing with someone that knew their stuff and had access to additional resources. Make sure you respect the nutritionist.

**She did tell me that eating needed to take on a different meaning for a while. It was no longer "fun" and I had to view it as medicine. Thus, she had me on a timetable. I had to eat according to the timetable whether I was hungry or not. (UGH...this was very difficult...but I am sure you can relate.)

**You guys are on the right track with the many small meals. She gave me a list of healthy combinations (think cottege cheese + apples...Peanut butter and crackers). I was basically eating a snack every couple of hours.

**Finally...she provided me with a relaxation CD. While this CD wasn't necessarily for me to use prior to eating, I did use it at night to help me get to sleep. Originally, I thought it was a little new agey but I used it EVERY night and it was instrumental in allowing me to get to sleep without the use of drugs. Kind of wondering if there could be such an imaging CD that could help you relax.

Hope this gives you some items to consider. I do believe the nutritionist helped and was a worthwhile investment.
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2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 08-18-2010, 07:23 AM   #12
MJo
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Re: Difficulty with eating/swallowing

could be anxiety related.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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