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Old 05-31-2013, 07:46 PM   #1
KsGal
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Need to be able to...EAT!

Anyone have any suggestions on how to stimulate my appetite? Im not even on a harsh chemo right now..Im on Tykerb and Herceptin. Ever since I quit the steriods...i can't eat. I never feel hungry, everything sounds nauseating, and I can only seem to choke down one or two bites. I am drinking Boost after my two bites, but good gosh its frustrating. I've lost 31 pounds now since I finished the steroids. The only time I have really been able to eat somewhat normally was when I had to go back on a low dose of the steroids for a couple weeks. My liver enzymes are elevated, but apparently not enough to cause this much of a reaction. I am on antinausea medication, ondansetron, so Im not really sick to my stomach, but I do feel nauseous when I try to eat. UGH!
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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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Old 05-31-2013, 09:04 PM   #2
BonnieR
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Re: Need to be able to...EAT!

What a conundrum! Could it possibly be a side effect of one of your meds? What does your doctor have to say? I'd there a nutritionist or dietitian associated with your treatment facility who you could consult with? I had some anorexia ( lack of appetite) during treatment but was able to eat small amounts of high calorie foods like cheese, eggs, yogurt etc in frequent small amounts. And Boost. I lost a good amount of weight but I managed to stay nourished. 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 05-31-2013, 09:06 PM   #3
Deb33
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Re: Need to be able to...EAT!

Please try acupuncture or at least acupressure - it is amazing for a variety of things but can really help appetite.
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11/19/10 Identified swollen lymph node
1/24/11 Mammogram showed microcalcifications - no mass
2/4/11 Diagnosed ER/PR- HER2+++
2/23/11 Began TCH protocol every 21 days 6x
5/23/11 Ultrasound of originally diseased lymph node shows normal
7/25/11 Lymph node dissection - 8 of 14 show disease
7/29/11 Double mastectomy with reconstruction (expanders)
8/29/11 Begin follow up chemo - Adriamycin 4 treatments every 2 weeks and Xeloda. Self inject Nupogen shots
1/6/12 6 weeks of Radiation finished
2/13/12 Last Herceptin/remove port
3/27/12 PET/Brain Scan NED :)
8/15/12 Final reconstruction - hello nipples, good bye expanders
9/14/12 Rejected implant/infection. Implant removed
5/6/13 Latissumis Dorsi surgery left side with expander

PS - my photo was taken 5 days after my double mastectomy surgery and 6 weeks after my TCH was completed
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Old 06-01-2013, 06:42 AM   #4
NEDenise
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Re: Need to be able to...EAT!

Jody,
I'm so sorry you're not feeling well! The Boost should provide enough nutrition...but do you have any decadent, usually forbidden foods that you could indulge in without guilt while you "bulk up"? You know...a favorite dessert, fried anything, chocolate, red meat... When I was in active chemo...I indulged myself...and it helped. And, I agree with Bonnie, big surprise, check with your doctor...drugs act differently in different people. There might just be an easy fix waiting at the end of that phone line. Deb's idea about acupuncture is a promising one too...especially if your insurance will cover it! (Hi, Deb!!)

Now... I certainly don't mean to make light of your weight loss...you're much thinner than I am, and can't spare the weight!

BUT...OMG...I soooooo hope that when I wean from the damn dreaded Decadron...
that I too am afflicted with 30 or 40 pounds of weight loss! Fifty wouldn't even be a bad thing!! Please God! Let such a scourge befall me! tee hee

Seriously...I hope you get an answer to this conundrum soon....and are feeling more like your old self before long!
Sending love and a big hug!
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 06-01-2013, 06:49 AM   #5
sarah
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Re: Need to be able to...EAT!

Have you tried pasta???
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Old 06-01-2013, 08:10 AM   #6
Jackie07
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Re: Need to be able to...EAT!

You can try to eat rice soup - half cup of rice cooked in 3+ cups of water. Rice is starch and can be dissolved by the enzymes in the mouth water. Just chew it real well before swallowing. Once your stomach is used to it, you can gradually add other stuff to the soup. Just remember to chew them really well...
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
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1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
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Old 06-01-2013, 08:51 AM   #7
BonnieR
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Re: Need to be able to...EAT!

Denise reminded me that my onc gave me permission, even encouraged me, to have milkshakes, burgers. ANTHING high calorie that I wanted and could tolerate
Keep the faith
__________________
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 06-01-2013, 10:06 AM   #8
Becky
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Re: Need to be able to...EAT!

If you can only eat 2 bites, try to do 2 bites often. 2 bites of full fat yogurt (Go Baby by Stonyfield is for babies who have to have full fat dairy and they are small yogurts). 2 bites every hour. You might have to plan better (so you have 2 bites of a wide variety of things) but you wouldn't have written if this didn't concern you. Two bites as often as you can. Have things ready - can of soup (chicken & rice) will last a day or two. Same with mashed potatoes that you can microwave your two bites. Alittle chicken or fish or beef - two bites. Canned green beans, corn etc.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 06-01-2013, 10:07 AM   #9
NanaJoni
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Re: Need to be able to...EAT!

I lost almost 50 lbs when I was doing treatments (sadly have gained back a good deal of it) but I found that I could tolerate things that were cold and sweet, i.e., sherbert, milkshakes, ice cream, Italian ices. Sometimes the cold and sweet would even stimulate my appetite a little. It is very hard to get back to eating, though - I would put food in my mouth and chew and then not be able to swallow it. Take it slow and just try to eat small amounts several times a day. I also like to freeze the Boost to slushy consistency.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 06-01-2013, 01:07 PM   #10
Lien
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Re: Need to be able to...EAT!

You could try putting chicken stock, cooked vegetables and some meat in the blender to create a smooth bland tasting soup. Sip cold or hot. Put it next to you and take frequent sips. Some rice in the mixture could help too. Use wholegrain, in stead of white, as it has more nutrients.

Sip milkshakes through a straw, in a covered cup, so you don't smell the aroma.

Make sure you are distracted while eating. Talk to someone who understands, watch tv, read a book.

Try to go for a walk before eating or eat a few small bites while walking.

Get checked for food allergy or intolerance. Perhaps the foods you have been eating for a long time no longer agree with you. Try rare foods like quinoa, duck, manioc, alligator, ostrich.

Take supplements and don't worry too much about it.

When my cat had cancer, she was ravenous. The vet said that some cancers make you hungry because they use up all the energy from the food. At least you don't seem to be dealing with that problem.

For decades I had trouble trying to keep the weight on. I turned out to be food intolerant and on the right diet (for me) I gained some weight and have no trouble keeping it on. A trauma or illness can set off food intolerance.

Hope this helps a bit.

Hugs

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 06-01-2013, 02:13 PM   #11
Adriana Mangus
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Re: Need to be able to...EAT!

Talk with your doctor, you have lost a ton of weight, so I wouldn't try anything else---my opinion---but getting advice from either a nutritionist from the hospital or directly from your doctor. You did not mention whether your doctor has any concerns about you loosing so much weight.

Please keep us posted.

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 06-01-2013, 11:26 PM   #12
KsGal
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Re: Need to be able to...EAT!

Bonnie..Im on about all the same meds. I did talk to my doctor, he seemed to think it wasnt much of a big deal, and probably due to coming off the steroids and my elevated liver enzymes. Changed my pain meds from Lortab to vicoprofen, which is easier on the liver, reduced my Tykerb dosage and told me he would see me in three months.
It does concern me because, well, first off I want to have some good nutrition going in so I can get stronger, and second because Im afraid I wont be able to stop losing weight when I need to.
Denise...pfffftttt...I was not way smaller than you. And Im shorter than you, so I looked like...a larger bald version of honey boo boo. When I finished WBR I weighed 171. Now I weigh 140, and it took about four months. If I do eat, cold things are better...few spoonfuls of yogurt, a string cheese, really cold Boost. Today I ate a whole cup of yogurt and I was pretty excited, greek with banana in it. I'll check into the acupuncture, thank you for the suggestion. Adriana I see the doctor in a couple weeks, so I will call and see if he might see me sooner. Thank you everyone..if I find out the answer I will definitely share.
__________________
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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Old 06-02-2013, 01:37 AM   #13
Lien
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Re: Need to be able to...EAT!

When I sent those tips, I assumed you would have discussed this with your doc... ;-))

Do you have an onc nurse you could talk to sooner? They usually have tons of info too.

Glad to hear your doc isn't too concerned right now. It is normal to lose weight after stopping steroids, but I agree, you need good nutrition as well. And vegetables are very important! They have lots of cancer fighting nutrients.

Love

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 06-02-2013, 08:33 AM   #14
NEDenise
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Re: Need to be able to...EAT!

I always found/find that cold things go down easier too. In fact, I never was much of an ice cream fan...until BC caught up with me.
Did you ever notice a strange tongue fuzziness while you were on the dreaded dex? I've had that, in varying degrees for months now.
I've always LOVED (like to the point of obsession) frozen chocolate...but when the tongue thing is in full bloom...ice cream is the only thing that has the right texture, and a full enough flavor to really enjoy.

I can highly recommend Friendly's Vienna Mocha Chunk,
Breyer's Strawberries and Cream,
Green's Toasted Almond Coconut,
Any brand of Moose Tracks or Peanut Butter Cup,
Klondike Bars - I like the dark chocolate coated ones,
and Phillie's Graham Slam - which may only be a local thing...but I could go on and on!
Again, this from the gal who used to get a bag of chips when everyone else chased down the ice cream truck.

Now...not to belabor the point...but my dear friend...at this point, I will be ecstatically happy to ever see 171 pounds again. That would mean losing more than 50 pounds.
And you are so sweet to mention that I am taller than you...but, I'd have to be like...6 foot 2 to carry this weight comfortably!
I'm not a doctor...but you may have noticed that I often have strongly held opinions and I agree that as long as you can get that Boost down...and you take your vitamins...the weight loss is only concerning to me IF you miss the sensation of enjoying your food.
Otherwise, I say...kick back and enjoy the slimming down!
After all, we brain mets gals never know when the steroids might be needed again...and the ballooning will begin anew!

Keep your chin up!
Wish I could send you some of my extra weight to you along with the big hug!!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 06-02-2013, 09:28 AM   #15
IrvineFriend
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Re: Need to be able to...EAT!

I lost my appetite big time and was losing quite a bit of weight between cycles (I'm 5'6' and went from 145 which was very heavy for me to 125 lbs) in a matter of a couple months. I found I like VERY specific foods and could eat those. My BF's chicken fried rice, BBQ steak, and salmon and rice. I just experimented until I found a few things that surprisingly I could eat. All the things I typically ate and loved were out the window - sweets had zero appeal to me. But most things with rice and a protein, like chicken teriyaki or a piece of fish were edible. I also liked oranges, generally the little cuties because they were so small and I could eat an entire one or split one.

Good luck, I know I went close to three days w/o an ounce of food and that got a little scary but I got naueous and vomited when I started having hot flashes. That was worse than the chemo!

-Julie
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 06-02-2013, 11:21 AM   #16
SusanN
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Re: Need to be able to...EAT!

LOTS of great advice here...even for me as I've been struggling to keep the weight on...I'm 5'3, been down to 108 and usually weigh 115!!

My oncologist told me from the beginning to keep the icecream/milkshakes going!!!

I've also spoken with my nutritionist from the beginning...and yes, Boost, Ensure Complete...3 a day if I can't eat and have lost too much weight!

I like to through in my blender, frozen strawberries, blueberries, banana's...ice cream, whole milk, etc...when I'm up to it! Mix it up..or ice cream, little peanut butter & chocolate...or caramel...

For me...each day has a different flavor...

WE WILL GET THROUGH THIS, HANG IN THERE!!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 06-02-2013, 11:47 AM   #17
Adriana Mangus
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Re: Need to be able to...EAT!

Love you diet, Susan!
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 06-02-2013, 12:28 PM   #18
StephN
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Re: Need to be able to...EAT!

Denise, if you have put on that much weight I would start to worry about your blood suger. I am sure they have been looking at that, but some here have gone into type 2 diabetes as a result of taking Decadron.

For anyone on the dreaded Decadron - I had that while on Taxotears as well as during the brain mets episode. That drug always caused my metabolism to speed up and I was HUNGRY. Being lucky with having no nausea, but having horrible mouth sores, I had a hard time eating some days.

Broth with rice or some scrambled egg was the best I could do some nights. Once I started the radiation, I took Boost once a day. Then the weight creep started. Over time I put on 10 pounds, but think it was due to less activity.

With brain mets my sleep pattern was changed and this put everything else off. The ups and downs of the 8 hour cycle is VERY hard on us. But gaining weight was not my problem. I lost at least 6 or 7 pounds after my gamma knife while on Decadron.

We each have our own reactions and side effects. However, the appetite thing hits most of us. We just need to moderate the sweets as that is not a substitute for real energy.
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"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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Old 06-02-2013, 02:39 PM   #19
NEDenise
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Re: Need to be able to...EAT!

Steph,
So sweet of you to worry about me! Blood sugar is being well monitored...and so far no problems. In fact, I had already started eliminating sugars and starches before the blood sugar issue was even raised. That may have something to do with it...or maybe I just have a very efficient pancreas.

Oddly, for the last several months, I've noticed that I don't ever feel hungry or full. I actually have to remember to eat when everyone else is out. I absolutely am not as active as I'd like to be...but I think that's improving with the decreasing dose of dex.

And...just like Jody and Susan's docs don't seem concerned that they're losing weight...mine are not at all concerned by my gaining...as long as all the blood work, and my blood pressure are okay. Of course, they don't have to look in my mirror every morning!
If everything goes as planned...it should only be another month or so until the dex is done...then we'll see about slimming down! So, for now...I just have to keep reminding myself that bloated beats brain swelling...hands down!! And keep trying to be patient! Not my greatest virtue...I know, I know...that comes as a shock...but it's true! hee hee

Here's hoping that by the end of the summer, I'll be able to post that I too am losing weight!! But more importantly, that my brain is NED!!

Denise
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Old 06-03-2013, 12:45 PM   #20
jml
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Eat to your heart's desire...whatever that may be!Re: Need to be able to...EAT!

KSGal~
Eat WHATEVER you want WHENEVER- you want.
I've lost 25 lbs since finishing WBR in February 2012. I've always said that Decadron or WBR destroyed the eating center of my brain.
I just don't eat. I just don't get hungry. And I don't respond to hunger cues the way one normally should. I've lost my sweet tooth and and I don't like cold food.
I keep Ensure on hand and try to remember to take 5-10 gulps of the dark chocolate flavor multiple times a day. But often I forget.
You have to do what works for you. Yes, I wish I craved higher quality food, but when I have a taste for something, I have to eat it - which usually means 4-5 bites before I tire of eating. And my appetite is so temperamental now that I often have multiple take-out containers of half eaten food that I never go back to. Believe me, the homeless folks that search the trashcans outside of my condo often find an assortment of spaghetti, chinese food, sandwhiches nicely packaged and bagged with an extra napkin & a small bottle of H20. Sometimes they reject my offerings and I do get a little offended, but try not to ;(
So if a large iced tea and hashbrowns works for breakfast, lunch and dinner, and if I can remember to eat that often, that is what I eat. Until the next urge hits.

Don't put more pressure on yourself! Just remember that you have to be well nourished to fight the good fight!

Keep the faith
Jml
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