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Old 02-27-2008, 12:07 AM   #1
DonnaNY
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Xeloda, any info please

Hi all, My moms Onc wants to start her on Xeloda. She is currently on Herceptin (two weeks on , one week off) and Aredia once a Month. Any info about Xeloda would be so appreciated. Any side effects and such. Thank you all so much. God Bless !!
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Old 02-27-2008, 05:25 AM   #2
Sheila
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Donna
I was on Xeloda on and off for a year...2 weeks on and one off. I was also on Herceptin....the side effects seem to be dose related...my main ones were watery eyes and dry sore fingers and soles of the feet. used Ahava skin cream and it did the trick. I was on 2500 mg a day and I found it very easy to take.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 02-27-2008, 05:40 PM   #3
megs
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I am a new member,have just been given the bad news that the brain mets have increased in size but the bone and other tumors have really settled down, the herceptin worked on those. Please could someone let me know if i just take xeloda and not the tykerb will still have a good result, the impossible question
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Old 02-27-2008, 06:04 PM   #4
Mykentuckyhome
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Dear newcomer, Although your onc. should always be consulted on things like that, I would think tykerb is very important because as I understand it, Tykerb passes the brain barrier for brain mets. I dont think anything else does that. I dont have brain mets, but I had been taking that combo since April of 07. Hope this helps.
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Old 02-28-2008, 12:23 AM   #5
DonnaNY
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Thanks Sheila
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Old 02-28-2008, 06:08 PM   #6
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Donna, I was on Xeloda with Herceptin for over a year, a very small dose(500 mg. 2 x's daily. It served to keep the cancer stable, and it was only when I resumed Xeloda at a higher dose, after a break to try other chemos, that I had hand/foot syndrom in a big way. At first my onc restarted me at 1000 mg. 2 x's daily, then I asked if we could up the dose so he increased it by just 500 mg. a day and that did me in. So as Sheila points out, side effects are usually dose related. From what I understand it's important to start lower and increase gradually, rather than the reverse.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 02-28-2008, 06:26 PM   #7
Bill
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Hi Donna, my wife was on Xeloda for several months at 3500 mgs. per day, I think, and suffered no side effects. Her onc. stressed to her repeatedly that if she suffered any side effects, like hand and foot syndrome, or diarrhea, to quit taking the pills and contact her immediately. Don't let your mom try to "tough it out" with diarrhea while on Xeloda if that were to happen. It can lead to renal failure. On the other side of the coin, Xeloda, as others have said, can be increased or decreased according to the tolerance of each person. My thoughts and prayers are with you. Love, Bill
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Old 02-28-2008, 06:38 PM   #8
Bill
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Hi Megs! I'm sorry to hear about the brain mets, but glad you have come here with your questions. Please feel free to ask anything. These awesome women and men have "been there and done that", so ask away. Like Kentucky said, it may be important to continue/resume the Tykerb. Talk to your onc. again about that one. Also, what kind of radiation treatments are being scheduled for your brain mets? I'm glad your other mets have settled down. Please keep in touch. We are thinking of you and praying for you. Love, Bill
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Old 02-29-2008, 12:00 AM   #9
DonnaNY
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This may seem like a stupid question but what is hand foot syndrome?
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Old 02-29-2008, 09:24 AM   #10
PinkGirl
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Hi Donna
I'll try to answer this question but hopefully some
of the others will chime in and correct me.

The hand/foot syndrome is a side effect of some
chemo drugs. Some of the drug gets into the small
capillaries in the palms of your hands and the soles
of your feet. It causes redness, tenderness/pain,
skin peeling/cracking. It can be mild or severe.
It is worsened by heat and friction.

Hopefully others can tell you how to deal with it.
Hope this helps.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 02-29-2008, 03:18 PM   #11
TSund
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So then hand/foot syndrome is different from neuropathy?

Thanks for the info

TRS
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 02-29-2008, 03:43 PM   #12
PinkGirl
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Yes, they are different. Neuropathy
is from damage to peripheral nerves.
It causes a "pins and needles" sensation,
and numbness usually to the hands and
feet, but it can be other body parts as well.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 03-01-2008, 12:54 AM   #13
DonnaNY
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Thank you all so much , my mom and I really appreciate the info and the all the support we get here from you all. God Bless !


With Love, Donna
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Old 03-01-2008, 04:42 AM   #14
Mary Anne in TX
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Hey Pink....great picture.....beautiful and brilliant!!! What a combination!
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 03-01-2008, 10:44 AM   #15
madubois63
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I was told to keep my hands and feet well moisturized. The doc gave me a sample of udder Cream. I use it all day long.

On chemo, I've gotten the neuropathy - that tingly/numb feeling; but I've recently started to get the hand foot syndrome. It feel different. It's like the bottom of my feet are on fire.

I have a paraffin wax machine (like the spas have for manicures/pedicures). That really helped the neuropathy. A foot bath with cooler water helps the hand/foot thing - mineral salts help too.
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 03-01-2008, 11:53 AM   #16
hutchibk
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Donna - something that you and your mom should know as she prepares for Xeloda... and something that your onc should be able to address as well, is that a shortage of a critical enzyme for the metabolism of Xeloda called dihydropyrimidine dehydrogenase can cause someone who is taking it to experience the most severe side effects from it.

It does not preclude someone from taking it, and I don't know what tests are available to determine whether you have a shortage of it or not, but just be sure to ask the doctor about it. I have tolerated Xeloda extremely well, so I can assume that I have all of that enzyme that I need...
__________________
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 03-01-2008, 04:08 PM   #17
TSund
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hmm...seems like they oughta make up a batch of that enzyme! ?
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 03-01-2008, 07:03 PM   #18
hutchibk
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I guess it's probably pretty difficult and improbable to un-naturally create a natural biologically occurring enzyme? LOL - Wouldn't it be nice, though!

Hand/Foot syndrome: following administration of chemotherapy (Capecitabine (Xeloda<sup>®</sup>), small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet, severely drying and irritating the surrounding skin. This is called Hand/Foot syndrome, (or Palmar-Plantar Erythrodysesthesia; PPE).

Also, Donna - in my opinion, one of the smartest things I did from day one was to stop taking Folic Acid (in all forms) because as mentioned in Xeloda info, supplementation with Folic Acid (by itself or compounded in your multi-vits or your B Complex Vits) can increase the severity of the side effects...

Also, I started taking vitamin B6 (by itself, not in a B-Complex formulation)- which helps protect the capillaries in the palms of the hands and soles of the feet.

Some good links that you might find helpful:

http://www.chemocare.com/managing/handfoot_syndrome.asp

http://www.cancerbackup.org.uk/Treat...s/Capecitabine
__________________
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 03-01-2008, 07:06 PM   #19
Diana1993
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Posts: 48
I am half way through round three of Xeloda and also experiencing hand and foot syndrome/ I moisturize many times a day with Aquaphor, and Burt's Bee products. At first I was massaging but this brings heat to the hands and feet so I stopped. I do soak in cool water and this seems to relieve the hot and painful sensation and I keep my feet up whenever possible. I believe someone suggested B6 and I take it also.
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Old 03-01-2008, 07:14 PM   #20
hutchibk
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Diana - ask your onc if they work with a dermo. I went to the dermo the other day (for something different) but she is very in-tuned to cancer specific conditions. She told me the best thing she has found for H/F Syndrome is a Urea cream. (it is made from what it sounds like it is made from) - it comes in a couple of different strengths. One is milder and I think can be bought over the counter at specialty pharmacies. The other is prescription strength. You might want to look into it. Even though I haven't had bad HFS, I do get very dry heals (and small splits/fissures in the heals) during my 2 weeks on Xeloda. She suggested I use this cream at night with socks, and it should really mitigate that happening any more.
__________________
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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