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Old 10-08-2007, 07:57 PM   #11
hutchibk
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Join Date: Oct 2005
Posts: 3,519
I don't think there is any such thing as a single "true picture" - every individual has a different experience with the different treatments. I have had a fairly easy experience with all of the treatments I've had, and I've had many... My first round through chemo I had some pretty crummy nausea thanks to Adriamyacin, but I kept it simple and took my Phenergan religiously, as well as googled and searched for all the wisdom I could find to help with the side effects. I can't tell you why things might work for me or chemos might not be as hard on me, but it has nothing to do with insurance. I have no 'fixes' for side effects that are reliant on insurance, except for Phenergan. I have created a routine that works for me and helps me tolerate chemo. I don't know exactly what it is that works so well, except that I really strive to be healthy and knowledgeable about boosting my body, soothing it, and nourishing it as much as possible. I play with my diet in healthy ways until something works for me. Every person is different. There are so many factors that need to be considered when looking at why some people have an easier time than others. There can be dosage differences, underlying medical conditions, differences in diet and lifestyle, age differences, and just flat out genetic/physiological differences. As my onc always says, what works for one may not work for another. But that is why we are always sharing what works for us here on this site, in hopes that we can help the next person. As far as the supposition that was put forth about the demographic of our site, let me just say that I have no children, am not married, am a 'nuclear family' orphan, and I don't have a 4 year college degree. I just have a burning desire to look for solutions to what ails me. That is why the support of this site is so very important to me! I hope we are able to offer some ideas here that you haven't heard before. Some of us have reached out and paid for cancer specific nutritionists to consult with us - and that is often the knowledge that we try to share with others. Of course it is prudent and wise to seek out individual nutritional support for yourself, but I am happy to foot the bill and share what I learn with everyone here. Hopefully when you check in here from time to time you will enjoy the benefit of our consultations!

Becca - please be sure you have NO folic acid in any of your supplementation or vitamins. That means taking no multivitamins or B complex vitamins. It can worsen side effects of Tykerb/Xeloda. Also, no grapefruit products. And you might want to try 50 mg of B6 3 times a day with meals for the inflammation around your nails. Everytime I get lazy and don't take it, my toenails are painful, and when I get back on track... it clears up amazingly quick. I hope you start to feel better soon!

Susan - please let us know how you do on T/X... I'll cross my fingers for you.

Flori - I will mail it tomorrow!!
__________________
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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