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Old 10-29-2007, 10:04 AM   #4
hutchibk
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Join Date: Oct 2005
Posts: 3,519
Hi Roz and Janet -

I don't know if it works for everyone, but I'll share my plan... I have been on the max dose of Tykerb and Xeloda since May and I no longer have any side effects. I was able to normalize and avoid diarrhea after about the first 5-6 weeks, but it takes some true discipline on my part.

please don't jump ship yet... try a few things first to see if you can mitigate the symptoms.

Some women do one week on and one week off of Xeloda (continuing with Tykerb everyday), and that seems to be more tolerable.

DIARRHEA
When experiencing diarrhea, I steer clear of milk and most dairy. I do eat occasional organic yogurt. I eat the BRAT diet (Banana, Rice ~I prefer brown rice~, Applesauce, Toast) in the morning for breakfast. Every morning when I have to, if diarrhea takes control again. I have found that I have to stay on a very very very strict clean diet. NO JUNK or fast food at all. No fried foods (it is scary how fast they can activate my diarrhea... but then they do directly activate the gall-bladder to dump it's bile, so it stands to reason). I drink mostly water, juices and tea. NO soft drinks other than Izze or the ones made with carbonation and pure juice (i.e. Italian sodas). I eat a 50/50 raw and cooked vegetable diet everyday. Salads, fruit, veggies (steamed, raw, sauteed), whole grains (brown rice, quinoa, oats, etc), whole grain pastas and breads (in other words, no bleached white flour products), natural meats sparingly, occasional cheese, lots of beans, cook with olive oil and I steer clear of sugar as much as possible. The cleaner my diet and the more disciplined I am about it, the less diarrhea I have. I have been on T/X for 5 months now and I have only one day per cycle, at the very most, of diarrhea these days. I rarely need Immodium at all, but if I do, it is only one day out of 21... I know diet is a huge factor based on my experience, as I have gotten lazy a time or two (especially when traveling), and fast food has been my intestinal downfall. When I corrected to my clean diet, all was well again in a few days. Along with a very disciplined diet, to avoid immodium, you can take Bentonite Clay (1 tablespoon each morning, shaken very well in 8 oz. of juice or water and followed by an 8 oz glass of water). This hint was given to me by my nutritional doctor (who is cancer specific) and it worked very well for me as I was trying to get my body regulated in the early days. He also suggested I could try Carob Powder in juice or water, but recommended the clay as the better of the two to help as an absorptive agent in the bowels...

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

If you show up with more than very mild rash:

RASH
As far as rash, here are some of the fixes that can be tried by your doctor...

*Employ a proactive approach in managing skin reactions.
*Suggest that patients use a thick, alcohol-free emollient cream.
*Suggest that patients use a sunscreen of SPF 25 or higher, preferably
containing zinc oxide or titanium dioxide
* If patient presents with rash, verify appropriate administration of drug and proceed with the following therapy algorithm:

Mild Rash:
Minimally located
No impact on activities of daily life (ADL)
No sign of superinfection

(shows picture of mild rash occurrence across bridge of nose and cheeks)

Continue EGFR targeted treatment @current dose and monitor for change in severity.

***Use:
Topical hydrocortisone 1% or 2.5% cream and/or Clindamycin 1% gel

Reassess after 2 weeks, if reaction worsens or does not improve, proceed to next step.
_____________

Moderate Rash:
Generalized
Mild Symptoms (e.g. pruritus, tenderness)
Minimal impact on ADL
No sign of superinfection

(shows picture of red worsened rash occurrence (pruritus) across nose, around nostrils, top lip, lower cheeks, and entire chin.)

Continue EGFR targeted treatment @current dose and monitor for change in severity. Continue treatment of the skin reaction with the following:

***Use:
Hydrocortisone 2.5% cream or Clindamycin 1% gel
or Pimecrolimus 1% cream
Plus Doxycycline 100mg BID or Monocycline 100mg BID

Reassess after 2 weeks, if reaction worsens or does not improve, proceed to next step.
________________

Severe Rash:
Generalized
Severe symptoms (e.g. pruritus, tenderness)
Significant impact on ADL
Potential sign of superinfection

(shows picture of worsened rash occurrence similar to moderate with more facial coverage and continuation to shoulders and neck)

Reduce EGFR targeted therapy as per label and monitor for change in severity. Continue treatment of skin reaction with the following:

***Use:
Hydrocortisone 2.5% cream or Clindamycin 1% gel
or Pimecrolimus 1% cream
Plus Doxycycline 100mg BID or Monocycline 100mg BID
Plus Medrol dose pack

Reassess after 2 weeks, if reaction worsens, dose interruption or discontinuation may be necessary.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

My hand/foot is in the form of sore toenails only, but B6 takes that away completely...

HAND/FOOT SYNDROME
To stave off hand foot symtoms, be sure to take your B6 (50mg per meal - total 100-150mg a day). For dry cracking skin on your feet, (which you must avoid at all costs, don't let it take hold!) we have a bunch of ladies here with cream suggestions that have helped. Personally, I love Brave Soldier Friction Zone. Some have had great results with one called Ahava.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

MISCELLANEOUS
Don't take any folic acid while on T/X - it can markedly worsen the side effects. You will find it in your multi vits and B complex, so stay away from those supplements while you are on T/X.

And no grapefruit products at all while on this regimine...


I hope this helps! Don't give up!
__________________
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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