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Old 03-24-2008, 10:02 PM   #1
weezie1053
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Location: Bedford, Virginia
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Question Anybody seeing a licensed nutritionist?

Okay, I completed my Herception treatment in Nov 07. Little by little, I am feeling more like a butterfly than slug now that I was able to color and foil my hair. Oh happy day! Anyway, my immune system is still hot to you know where. I recently kept asthmatic bronchitis for 5 friggin weeks. My well meaning friends and family think they have M.D. after their names and they are telling me what supplements to take, what to eat, and more often than not, what not to eat. I am seriously considering making an appointment with a bona fide nutritionist to hold my hand and pay for their advise to tell me what to eat, not to eat, and what supplements might give me more zip that has been zapped.

Have any of you (excused the southern slang) been to see a nutritionist? Was it beneficial? I'd love to hear some success stories and any advise. I had a guy who owns three nutritional stores give me some "Fuji" juice to increase my energy level, and it was like drinking motor oil.

All kidding aside, I am, however very serious about wanting to improve the quality of my health.

Louise
__________________
  • Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
  • Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
  • AC/Cytoxin combo - 4 treatments (dose dense);
  • Taxol/Herceptin combo- 12 weekly treatments;
  • Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
  • BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
  • MRI, 08/02/07 - NED
  • 1 year Anniversary - 09/07; completed Herceptin 11/07.
  • Mammo 02/14/08 - NED; MRI - 08/2008 - NED
  • 2 year Anniversary - 09/08
  • Mammo 02/09 - NED; MRI - 08/09 - NED
  • 3rd year Anniversary - 09/09
  • 5th Annivery - 09/2011 - NED
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Old 03-24-2008, 10:31 PM   #2
hutchibk
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Hi Louise - I sent you a PM with a link...
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 03-25-2008, 04:56 AM   #3
IRENE FROM TAMPA
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Smile Hi Louise

I did see a nutrionist several years ago and I did like going to him. He was very knowledgeable and studied everything about what chemos I was taking before giving me anything. When I first began with him, I was taking quite a few different things. I never did the juice thing. Very pricey and not really sure it works. It surely can not hurt but the pocket book was another issue.

I eventually weaned off of so many supplements because it was getting too expensive.(I always ok'd any I was on with my onc. first while on chemo)

I try to keep my immune system strong by eating sensibly (not always) but try.

But I do think if you choose a good nutritionist they can put you on the right track.

Good luck
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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Old 03-25-2008, 07:54 AM   #4
BonnieR
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During treatment I saw a dietician who is on staff at my cancer center . She offered good advice at that time. I intend to see her again soon since my nutritional needs have changed (no more milkshakes to maintain my weight! lol!). I believe it was part of their comprehensive program. I dont think there was a charge. Or insurance covered it. Might your cancer center or hospital have something similar? I liked that it was affiliated with a medical facility. .
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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 03-25-2008, 07:30 PM   #5
Bill
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Weezie, all I can add is what Bonnie said, Nicola's treatment center provided a nutritionist to their patients, maybe yours does, too. I think most people don't take advantage of that, and I just got to thinkin', after chemo. once a week and scans, and then meeting with your onc. to discuss results, "all of you" know the drill, when do you have time or feel like making yet another appointment with a nutritionist? Having said that, I think it's supremely important, but we never took advantage of that opportunity. Maybe the nutritionist/dietician could meet with you as you arrived for chemo., I don't know. With Nicola, as soon as they gave her the premeds, boom, she was out, and her treatments would be for 4-6 hours and then she was ready to go. We never had a break from treatment, and it just occured to me, that many of you wonderful warrior women have wondered what you will do with yourselves on those days when you would normally go to chemo., only your course of treatment is done. Many have suggested, myself included, "go to a spa, go to the park that day instead, go run through the woods naked, etc.", but maybe after you do all that, you could go meet with a nutritionist/dietician. We get into the habit of going to appointments regular as clockwork, and then when we don't have to go anymore, some of us don't know what to do with ourselves, but if you just go to the n/d instead, that might be a really good thing. Keep fighting the good fight, Bill
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Old 03-26-2008, 08:24 PM   #6
weezie1053
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I have emailed my Oncologist several times inquiring about a nutritionist at UVA where I am doing my followup appointments now that I have completed Herceptin. I think I will email his secretary with a copy to him asking them to schedule me an appointment in conjunction with my appointment with the Onc in June. UVA is 1 hr, 45 minutes from where I live, but I have been so happy with the medical team. I wanted to find somebody local, but I think I better stick with what's working...UVA.

Thank you all for your recommendations.

Louise
__________________
  • Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
  • Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
  • AC/Cytoxin combo - 4 treatments (dose dense);
  • Taxol/Herceptin combo- 12 weekly treatments;
  • Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
  • BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
  • MRI, 08/02/07 - NED
  • 1 year Anniversary - 09/07; completed Herceptin 11/07.
  • Mammo 02/14/08 - NED; MRI - 08/2008 - NED
  • 2 year Anniversary - 09/08
  • Mammo 02/09 - NED; MRI - 08/09 - NED
  • 3rd year Anniversary - 09/09
  • 5th Annivery - 09/2011 - NED
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Old 03-26-2008, 10:17 PM   #7
BonnieR
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Louise, maybe you can contact the nutritionist/dietician directly and schedule your appt to coincide with your oncology date. I was able to do it that way. Without a referral.As long as I was a patient of the facility. Let us know what you learn.
And, yes Bill, I have seen the dieticians consulting with patients during treatment.
__________________
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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