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Old 06-01-2007, 11:12 AM   #21
Andrea Barnett Budin
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Wink Dreaded Diarrhea

Bailey, Sorry about all the side effects, but you seem to be on top of ea w/a back up plan. Good for you! That's the way to do it. 1 side effect at a time. Re DIARRHEA -- when I was put on Taxotere (have mets to liver and 4 Adria and 8 CMF) I began the diarrhea thing. Never had an issue in that department before. Docs kept telling me it wasn't coming from Taxotere. I was/am an IBS (irritable bowel syndrome) patient. Thank you very much. I needed this fear of exploding at any given moment to add to my concerns. I hear this girgling noise in my belly and I know I have less than a minute to get myself to a toilet. I have seen numerous Gastro docs, been on numerous drugs. Read up on the Internet about the condition and learned to be on the lookout for "trigger" foods (for me -- nuts, corn, cheese, but can take small amnts of lowfat cheese, chocolate, splenda, sugar, anything greasy or fried -- all the things I love). But the consequences aren't worth eating these things. THEN I FOUND FROM MY NY ONCOL/HEMATOL/NUTRITIONAL EXPERT -- BUY N-WOBENZYM AT THE HEALTH FOOD STORE. TAKE 2 TWICE A DAY, W/A MEAL. MADE ME 90%+ BETTER.

Then a yr later I was put on Effexor (anti-depressant that could stop my hot flashing). That had reached an all-time high. I was post menopausal, age 50 when initially dx in '95. Have been FLASHING since I was forty. I am now 62, THANK YOU GOD AND DR. SLAMON AND ALL MY ONCS AND EVEN NASTY OLD TAXOTERE, BUT ESP HERCEPTIN!!!! Anyway -- the point -- the Effexor did NOT help the flashing BUT -- it has eradicated my IBS. A mystery to be sure. Sometimes I need 1 Imodium. Used to have uncontrollable diarrhea 5 out of 7 days. Used to take 20! Imodium and it didn't help much. When I asked my docs about taking 20, they asked, Then what happens? Then the diarrhea stops and the next day I am normal. No constipation, then, they asked. Never, I said. Then, go for it. Interesting.

I wish you all a wondrous remedy for every side effect you suffer from with all my heart! Sending loving, healing energy to every soul sister out there, ANDI
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Old 06-01-2007, 05:20 PM   #22
bailey
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Lala - thank you so much for your response. Right now I am on 5 Tykerb/day and 6 xeloda/day - 3 in the morning and 3 in the evening - 14 days on and 7 days off of xeloda - right now I am off the xeloda for the 7 days. What was your dosage of xeloda reduced to and what did you start with? I was told to take just 1/4 imodium so I'm not too constipated. When you talk about bulking up what foods are you talking about? I have been drinking lots of water and drinking propel for the electrolytes - what electrolyte pill are you taking? I also eat a banana/day for the potassium which is normally good. Any more info you have and answers to my questions would help as I see the Onc on Wed. and want to be more knowledgable. Also, how long before your side effects subsided - I'm ready to throw in the towel which is not me at all. Plse. let me know.
Thanks and hugs to you
Bailey
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Old 06-01-2007, 05:30 PM   #23
bailey
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Andrea - I was on Effexor in 2003 when my cancer mets to lung and liver but I weaned myself off last year - it's an antidepressant and I wanted off - it did help with my hot flashes but I really have not had them the last number of months anyway - I am 54. I have been researching acidic/alkaline foods in the body and found it to be so interesting. I have had some heartburn issues - now on nexium or prilosec but in my research found that when you are sick and on meds your body tends to be very acidic when it should be balanced and preferably towards the alkaline so I'm eating things like lemon and watermelon that you would think would be acidic but when ingested are actually alkaline. Also, I take a tsp. of baking soda with water about 5 times/day to help with heartburn and all this seems to be working somewhat. Also pineapple. They recommend mostly vegies and fruit and actually recommend eating 80% alkaline foods and 20% alkaline foods till your body neutralizes then you can eat 60 alk. and 40 acidic - it seems to be working somehow. Also, the bananas are awesome for potassium and a million other things. Yogurt with acidopholus is important . Right now my stomach continues to be hit and miss - I'm not sure what to eat . So much diarhea - I'm afraid to eat too much vegies and salads as it'll make it worse - I don't know what to do.
If anyone else has more info. plse. forward. Also, what is this N-Wobenzym you mention?
Help help - thanks
Hugs,
Bailey
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Old 06-01-2007, 05:31 PM   #24
Andrea Barnett Budin
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Wink Bailey -- Vitamin C Cream

Can you use this product (Jan Marini) on the face? For wrinkles? I have a rosacea like rash on my arms for yrs Doesn't itch, but is very apparent. It is on my declotee area (?sp) as well. I think it's from the Herceptin, but am not sure. Am interested. Please let me know. AndiBB@Aol.com Sending happy, healthy energy your way... ANDI
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Old 06-01-2007, 05:45 PM   #25
Andrea Barnett Budin
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Wink N-wobenzym

Bailey, It's an immune booster, anti-inflammatory, I think. I checked it out on the Internet, as I do everything any doc recommends, when I started it in '05. Can't remember details now. But I do know that it changed my life! 2 w/meals twice a day (different I think, than as directed on bottle). Did the trick. I now also take probiotic Asidophilus (friendly bacteria, maintaining healthy microflora and major gas relief). One capsule twice a day. Wonderful. + Fennel seeds, relieve gas and "settle" stomach. Can take 3 a day. I do.

I had been on Zoloft at one point over the last 12 yrs. Anti-depressant. Took 1/2 dose. Every time I'd give my list of meds to a doc, they'd say, You know it's probably not working at that dosage... And I'd reply, but I feel so great, I don't want to stop. Did wean myself off. Then came my mets into the liver. Then I used Ativan at night or mid day if I was home, which being on Taxotere and wiped out from it I mostly was. When the hot flashing of 22 yrs hit big time, dripping wet all day, I began the Effexor. Which, as I think I said, did not help the hot flashes, but did help the diarrhea to the point that I gave up the Wobenzym. Didn't need it anymore. Strange. AND I feel I can deal w/the every day business of staying a Survivor. Been NED/STABLE since '99. It's hard work staying there and remaining joyful and zen serene. It allows me to stay in touch with my spiritual core, connected to my Soul, which keeps me well and healthy. I give strict orders to my bod daily -- stay well and healthy. That's what I wish for you and all my beloved soul sisters in our zeal to triumph over bc and keep on smiling... Much love, ANDI
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Old 06-01-2007, 10:24 PM   #26
Lala
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Bailey

I sent you a private message to answer your questions.
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DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 06-02-2007, 01:00 AM   #27
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Lala, we are keeping you busy with the private messages! You rock!

Bailey - Hang on! You can do it. If you need, your Onc can lower your Xeloda dose and it should really help. I too had headaches during my first 2 weeks on Xeloda. I am on my second round and I don't have anymore headaches... Also on this second round, I am not having diarrhea anymore either. But I am really thinking out what I eat to help with that. And, I only had the rash for the first 10 days, it manifested as rosy, dry cheeks - making me look like Raggedy Anne. I use Dr Weil's planidote mega mushroom lotion and cream... it works great (but it's not cheap!) Today I started to get some of the earliest indications of hand/foot... with stinging and redness in the crooks of my toes. I am taking B6 (50 mg 2 x day) and am looking into getting some topical urea/lactic acid from the dermo to try and prevent it. I highly suggest googling "hand/foot syndrome prevention" - I learned a lot about it that I didn't know.

As far as bulking foods, think the BRAT diet. Bananas, Rice, Applesauce, Toast and Tea. I cook a big pot of brown rice about twice a week and put it in the fridge. I usually eat a BRAT breakfast, almost every morning. I believe that really helps me keep the diarrhea at bay. I only had to use immodium 3 times in the first 3 weeks...

If you are having a lot of diarrhea, then you are probably dehydrated as Lala mentioned... and dehydration can be a primary cause of headaches. Make sure you are drinking 80 - 100 oz of water a day. VERY IMPORTANT!
Don't take any multi-vits or supplements with folic acid in them as it makes the side-effects of this combination worse.

Don't give up!! You can do this. Talk to your Onc and let them know that it is beating you up and they can lower your dose.
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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 06-02-2007, 11:22 AM   #28
Andrea Barnett Budin
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Wink Water, Water, Water

YES, I ECHO bRENDA'S COMMENTS! 10 8OZ GLASSES OF BOTTLED WATER A DAY! It's all about the water. Keeping hydrated every single day is a job. Water is your forever prescription to take daily. Walk from room to room, go from place to place, with WATER. It keeps you hydrated. Is great for your skin. And most importantly -- flushes the toxins out of your body!!!

It can not be stressed enough. In real estate it's LOCATION, LOCATION, LOCATION. In bc health -- it's WATER, WATER, WATER. And, yes, much peeing. Get used to it. It's for your health and well-being.

Hope the onc lowers yr dosage so the headaches go away. Wish you ALL health and wellness. I have this entire board in my prayers. Sending happy, healing energy to all my sisters... ANDI
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