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Old 01-12-2015, 09:59 AM   #1
CarolineC
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Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
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I need some (or a lot) or help. Basically, I have lost so much weight in the last 7 months that now I am drastically underweight and a feeding tube is being considered. I spent New Year’s Eve in the hospital and was very close to having one, except things weren’t being explained enough to make me feel comfortable about the whole thing. A dietician came to see me and I was to have the tube inserted that night, but a nurse came to my room later on and asked me who was to insert it. I started feeling uneasy, kind of like last year when I was to have a shot for pain management from shingles and the doctor didn’t outline the risk factors and accidentally punctured my lung. That is when this whole weight loss nightmare started. I am tired of being told that this is what I am going to do and this is what I am going to take without any regard to me being a person, not just a patient. I also started thinking about what was in the stuff they were going to give me and found it has dairy and soy in it, both of which I can’t tolerate.

I started feeling much better on saline alone and gained weight and my stomach was feeling better in the hospital and after another consultation with the dietician a plan was brought up where I was to eat more often at home and drink every alternate hour. That actually went well until my lower back started hurting and I had some radiating pain in my right arm and right side of my neck. I was starting to introduce goat’s milk for extra calories (instead of drinking water which has empty calories) and yesterday I had a very bad upset stomach. The upside is I don’t have that pain anymore, downside, I have lost weight and am dehydrated again. I am 5’7” and weigh about 87 pounds.I have lost 40 pounds. Argh!

I am to see my local onc tomorrow and will most likely discuss the feeding tube again. I have realized a lot of the problem is I get severely dehydrated and can’t recoup the water loss from the upset stomach. At least things have improved since I’ve been on digestive enzymes (which I think are also dehydrating to me) but I wish this could have been figured out 20 pounds ago. The enzymes are actually helping me to process my food, although I have only been on them a few months, but I don’t have as much D as I did.

I am seeking input from anyone who has suggestions about non-dairy, non-soy supplements. In the hospital I tried Ensure but that gave me stomach cramps and nausea for hours. I think the backache and pain in the arm could be related to maybe constipation (?) and the fact that I can’t process too much of anything quickly and maybe I had too much protein introduced for my system. My whole digestion has been affected and I have to have things introduced slowly as well my gallbladder has given me problems so I can’t have high fat or fried foods.

My general doctor doesn’t think this is cancer-related and neither do I . I think my body went into some kind of adrenal crisis after the lung puncture and it affected my whole digestion. I am much better symptom-wise since last summer, but I need to gain weight. I do have an adrenal problem and unfortunately two spots showed up in my liver a few months ago, but I think those problems are medication damage and dehydration-related.

Any suggestions would be appreciated.
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Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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