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Old 10-05-2007, 11:00 AM   #2
hutchibk
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Join Date: Oct 2005
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Hi Denise - from the experiences of some of us who have been on T/X for a few months now:

1. eat as fresh and clean and healthy as possible. Drink lots of water and healthy tea and juice. Steer clear of milk if you are experiencing diarrhea. Exclude sodas, fast food and boxed/bagged junk food and snacks from your diet. It can make the difference between unmanageable diarrhea and preferred "normalcy and regularity". Also, many have experienced great help from yogurt/acidophilous products which help keep the stomach and intestines bacterially balanced. Bentonite clay once a day can also help absorb excess water that is held by the bowel...
2. the first few cycles, keep the kitchen stocked with BRAT diet items as back-up while your body gets used to the T/X combo (Bananas, Rice, Applesauce, Toast). Revert to these items in tandem with immodium as necessary to keep any severe diarrhea under control.
3. Watch for rash. Some people get it worse than others. Mine only lasted about 2 weeks and was limited to dry patches on my cheeks. If you do get a bad rash, there are several options your doctor can use to mitigate it. (Let me know here by posting and I will re-post the info from an informative brochure that Joe shared with us...)
4. It is a good idea to start lotioning your feet and hands often, now, if you don't already. (I have found one called Brave Soldier Friction Zone for my feet that is amazing. I use it about 3 nights a week and wear socks over it. Some have found Ahava to be wonderful for them) Some here have experienced severe hand/foot syndrome. I have only had a couple of sore toenails. Lotion will keep especially your feet from drying and cracking, which is hard to correct after it has started. Hand/foot syndrome is a result of the chemo leaking out of the tiny capillaries in our feet and hands and irritating the surrounding skin.
5. Don't drink or eat any grapefruit products.
6. Don't take any supplements or vits with folic acid in them, most noteably multivitamins and B complex. (folic acid can worsen side effects).
7. Take B6 supplements (100-150 mg a day - I take 50 mg with each meal) to help contain and mitigate the hand/foot syndrome. This is really important.

That is all I can think of for now. Hope this helps.

Don't be afraid of starting it like I was... I sat on the couch for a week when I started taking it, just waiting to get really sick (nauseous, which I haven't at all) or for my body to explode. I have to say, this is the easiest regimine that I have had so far, but everyone is different. I feel pretty darned normal, just a tiny bit of fatigue from time to time. It is just a matter of seeing how your body reacts to it and taking measures to mitigate the side effects.
__________________
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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