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Diet and Nutrition By popular demand our nutritional message board. This board will be monitored by a Registered RD who is certified in oncology by the American Dietetic Association

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Old 01-12-2015, 09:59 AM   #1
Senior Member
CarolineC's Avatar
Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
Supplement information

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 Yearís Eve in the hospital and was very close to having one, except things werenít 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 didnít 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 canít 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 goatís 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 donít have that pain anymore, downside, I have lost weight and am dehydrated again. I am 5í7Ē 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 canít recoup the water loss from the upset stomach. At least things have improved since Iíve 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 donít 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 canít 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 canít have high fat or fried foods.

My general doctor doesnít 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.
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
MarĖApr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 Ė 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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Old 01-12-2015, 11:18 AM   #2
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waterdreamer's Avatar
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
Re: Supplement information

I was really underweight in 2009, I went on a macrobiotic diet and they suggested I eat sweet brown rice (that is what it is called) no sugar added - you can put it in the blender with your choice of healing herbs and add water to the consistency you like and then eat it - in macrobiotics you are supposed to chew your food 100 times, so since it is blended, just make sure that enough saliva is being produced to break it down.
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.

Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Ė Thoracentesis 1500 ml drained from right lung.
June 2016 Ė CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Ė Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 01-12-2015, 08:00 PM
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