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06-03-2013, 02:44 PM
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#21
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Need to be able to...EAT!
Where is Tanya, our registered oncology nutritionist? I bet she could help.
I think the body is smart and knows what it needs. The gastro intestinal track might be overwhelmed by the chemo or other things.
Eat lightly. Don't try to eat alot at one time. Several small meals or snacks might be good during the day.
I like the suggestions about the soft rice and eggs. Perhaps a little yoghurt will help replace the friendly bacteria in the gastro intestinal track and give you extra protein and calcium. If you don't want to eat yoghurt you can get chewable probiotics from any health food store. Some brands also have digestive enzymes in them. You might want to wash and freeze small fruits like grapes and eat a few when you feel like it. They are very good frozen.
I make my own fruit juice from frozen berries or other fruits. I use half for drinking and mix the other half in a smoothie with yoghurt or almond milk and protein powder from the health food store. I pour the mixture in small cups or ice cube trays and freeze them for refreshing small snacks during the day. You can cooka a few veggies and juice them instead of eating tghem whole. Cooked carrots, apples and oranges juiced together are very refreshing and nutritious. Try Gerber 2nd foods, especially the fruits and sweet potatoes. They can be eaten the way they are and are not too much to eat at one time. Those little boxes of raisins are great carry along snacks for when we go out. I also carry a cereal bar or a few crackers with cheese or peanut butter with me no matter where I go. Even if I don't eat everything every little bit helps. I also carry water with me
re.
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06-03-2013, 02:54 PM
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#22
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Need to be able to...EAT!
I was the same when I had chemo and I could ill afford to lose weight at the time. I agree with Becky to eat little and often as I did, I finally began to gain weight and get an appetite about a year after I finished treatments.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
Last edited by tricia keegan; 06-03-2013 at 02:56 PM..
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06-03-2013, 04:31 PM
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#23
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Need to be able to...EAT!
Elaine brought up chewable probiotics. That reminded me that I took acidophilus and bifidus tablets, which helped.
Plus the havoc played with our elimination system by the drugs and the pre-meds do not do us any favors. Finding a good balance on the elimination side certainly helped me want to face more food.
Hope things are better for you by now.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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06-04-2013, 03:38 PM
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#24
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Need to be able to...EAT!
There was a time in my life when, due to a severe emotional trauma, I just could not eat. I remember how scary that was. Eating is so primal, and we know we need to do it. There was also the regret that something I used to like so much was such a chore. Like you, it was two bites and then it simply became impossible to put in, chew, and swallow any more.
People told me I looked great, and I did. I'm usually a size 10 or 12, and I got down to a size 6 or 8. But the experience made me realize how upside down and backwards our cultural values can be. I was wasting away! Looking great in a sundress did not make up for that.
I wonder if maybe there's guided imagery that would be helpful to you? If not, perhaps simply doing mindfulness meditation would help you get back in touch with your appetite.
Good luck! Let us know how it goes.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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06-06-2013, 12:49 AM
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#25
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Need to be able to...EAT!
Im hanging in there...Im taking probiotics. Im eating a little bit more than I was...trying to work in a lot of the suggestions I have gotten from you all. Im still eating only few bites at a time, but doing it more frequently. I can get about a half a cup of yogurt down for breakfast. Sometimes because I don't get hungry I totally forget to eat, so I have set the alarm on my cell phone to go off every couple hours to remind me. Amy, I never thought about it that way, but you are right...its totally backwards and upside down. Makes me sad. Im also doing some hypnosis and meditation. I know I have to eat to gain strength and be better. It's only a matter of time before I will have to start a more harsh treatment regimen, and I want to be strong when I do.
I just want to say thank you to everyone for all the suggestions, and just for being there when I have a question or I am feeling down or whatever it is I need. Wish I could just give you all a hug....
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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06-06-2013, 01:06 AM
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#26
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Need to be able to...EAT!
and JML..thanks for posting. Its nice to hear someone who has the same results after WBR. I too said..they must have damaged the part of my brain that tells me to eat..or I must have a tumor in the part of the brain that controls my appetite. I think Denise is right, I need to quit obsessing about it, and if I am getting in enough calories with the Boost and making sure to take supplements and eating what I can here and there...well, then maybe its enough for now. I hope so. 
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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06-08-2013, 01:26 PM
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#27
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Need to be able to...EAT!
Have they put you on Megace or Marinol yet? That's what they give to people who get under a certain weight at my oncology office. My friend there was down to 89 and they put her on Megace and now she's up around 100 again - she looks great.
I too, can't eat. I get full with one or two bites. I think it's liver disease, it just makes us not hungry and eating is painful.
Our family tradition is to eat dinner together nightly so when we all sit down, I eat a few bites and that is enough to keep my weight in the upper 90s, which isn't so far off my normal weight of 103. I keep a bowl of treats that I like, right now it's those Spree candies and sometimes I just grab a few and eat them. And, I love coconut popsicles and I eat one at night watching TV and if I want two, I eat two. I'm not active so don't burn a lot of calories. Sometimes I eat a yogurt during the day.
It's funny because until I got cancer, I was the healthiest eater you've ever met - I haven't had a soda in maybe ten years, I don't do dessert, love veggies, grains and fruits - and now I can't really eat that way anymore. It's just hard on my gastro system so I have to do easily digested foods and oddly, that's what my body wants.
My doctor says at this point, any calories are good calories. The big worry is bedsores so keeping some weight on, however you do it, helps buffer that and keeps your skin from breaking down if you get sick and have to stay in bed.
Remember, the sugar feeds cancer thing is a myth.
http://www.mayoclinic.com/health/can...SECTIONGROUP=2
I'm sure you go a ton of good ideas in this thread! Dropping 30 pounds would be a big red flag at my oncology office and I'm surprised they haven't prescribed something for you. Maybe they have a certain weight/percentage of normal they get to before they do that? You can ask. *hugs*
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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06-12-2013, 11:55 PM
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#28
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Need to be able to...EAT!
Thanks Ann. smiles. No, they haven't given me anything yet. Even though I lost thirty pounds, Im not near a dangerous weight at all. Im right around 140 last time I checked. Also, a lot of the weight I have taken off was weight I gained on dex. I am on nausea meds and omeprazole. Dont have to take the nausea meds all the time.
Im sure you all can identify with me when I say...Im just sick of being sick. Im grateful for every day I have here with all of you and my family and friends, but I wish I could eat, and I wish I had more energy, and I wish I had HAIR..lol. You all know, its just a rough road to travel, and sometimes it seems overwhelming. If it was up to my body I just wouldn't eat at all apparently. I have scans and labs middle of July, so we will see what is up with the good ole liver and brain then. Until then...Im just chilling eating ice cream and pudding and BOOST.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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06-13-2013, 07:51 PM
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#29
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Need to be able to...EAT!
Yeah, it is not fun being sick. Your brain never catches up to that does it? I still have a hard time when I fill out a questionnaire and it asks me how I'd describe my health: excellent, good, okay, poor....I always still want to put down excellent. Hah! I have to force myself to put down poor.
I do find this comes and goes. I'm feeling energetic these days, which I'm taking advantage of. It's rare and beautiful and I appreciate it a lot more! Often we are tired and sick and not able to do much, but I've found that once in a while, a period of energy comes around and it is so nice! I hope you have one soon!
__________________
http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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