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Old 07-07-2008, 10:55 AM   #1
GillianG
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Join Date: Jul 2008
Location: UK
Posts: 3
Tykerb side effects

Hello everyone!

I've been taking a look at this forum and would be very interested in responses to my question about the side effects of Tykerb.

In the UK, I have been offered participation in the ALTTO Trial which has 4 arms one of which is Tykerb alone for a year or within other arms, a combination of Tykerb and Herceptin.

I'm anxious about the side effects and am trying to make an informed decision about whether or not to participate in this trial. I have a very demanding job and don't wish to take a drug that may cause difficulties.

I have also been offered the chance to participate in the PERSEPHONE trial which compares Herceptin taken over a year or 6 months.

It's hard having to decide between the two trials, or of course not engaging with any trial and just going for the Herceptin for a year.

I've read about rashes and acne with Tykerb. Are these common side effects? What else might I expect were I to take Tykerb (I realise of course that side effects can be different for everyone).

Many thanks

Gill
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Old 07-07-2008, 07:54 PM   #2
hutchibk
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Join Date: Oct 2005
Posts: 3,519
Hi Gill-

a few things to help you while you consider these trials... and I thank you for considering participating as I believe these trials are very important for refining the future of HER2 treatment for those who come after us!

1. Tykerb crosses the blood/brain barrier, and is currently
thought to perhaps protect the brain from metastasis if used in early treatment. Not a bad reason to participate in a Tykerb trial. Some on here have combined Tykerb with Herceptin already and are tolerating it well. Also, there was a newer study posted here a few weeks ago that spoke to the promise of Herceptin with Tykerb...

2. There is no telling whether the Herceptin for a year is the answer for you or not. It has contributed to putting some of our members in remission for many years and then others of us have had recurrence after a year or more of Herceptin... it's all just a big unpredictable ball of confusion at this point in time, but we all hope to have predictive testing on our side within the next 5-10 years. I hope they hurry!

3. Tykerb side effects vary by individual. I have been very fortunate to have had very little side effect from Tykerb. I got a very mild bout of dry skin on my cheeks for about 2 weeks and it disappeared. I had about 2 months of sporatic diarrhea, but that went away with a disciplined diet and my body getting used to the drug, and after more than a year I have virtually no side effect. Some here have had much more acute side effects. It just depends on the individual.

Good luck with whatever you decide. I wouldn't worry too much about the side effects. I think they are very manageable and can be easily mitigated.

Brenda
__________________
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 07-08-2008, 01:11 PM   #3
GillianG
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Join Date: Jul 2008
Location: UK
Posts: 3
Hi Brenda

Thank you for your response which I appreciate. It's so hard being presented with two trials and trying to make the right decisions.

I'm currently undergoing chemotherapy and am participating in the TACT 2 trial. I really do believe that clinical trials are imporant knowing as I do, that I'm benefiting from those who've gone before me.

I so want to get this decision right - your comments are enormously helpful as I try to weigh everything up. I'm doing my best to balance my quality of life with treatment and am hoping that after this I will not need anything further other than reconstruction surgery. Your comments have been helpful

Thanks!

Gill
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Old 07-10-2008, 09:14 AM   #4
SoCalGal
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Location: LA LA Land
Posts: 1,607
Hi Gill-
I have been on Tykerb and a variety of drugs for a little over a year. For the past 6 months Tykerb & Herceptin (and for the past 3 plus months I've added in Avastin & some Zometa). All my therapies are targeted and easy to tolerate.

I would say that compared to chemo that kills rapidly dividing cells (all other non-targeted therapies) Tykerb/Herceptin is easy to manage.

Brenda said it well and I would agree with her points. The side effects really dissipate over time. I think the rash & acne side effects appear early on but are not bad and the only person to notice would be you. The diarrhea from the Tykerb for ME has improved and is very manageable mostly through diet.

I was on herceptin alone for 20 months in 2002. It was after I stopped Herceptin that I had local recurrences. But it wasn't until 2007 that I was diagnosed stage 4.

I don't know if I "should" have stayed on herceptin. My docs were not recommending it at the time. It's all such a guess and that's what makes it so hard.

Let me know if I can answer any specific questions - PM me.
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 07-11-2008, 03:28 AM   #5
Lani
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Join Date: Mar 2006
Posts: 4,778
will post this as a separate thread as well

it just confirms that the dermatologic side effects seem to be mild

: Breast Cancer Res Treat. 2008 Jul 4. [Epub ahead of print] Links
Analysis of dermatologic events in patients with cancer treated with lapatinib.

Lacouture ME, Laabs SM, Koehler M, Sweetman RW, Preston AJ, Di Leo A, Gomez HL, Salazar VM, Byrne JA, Koch KM, Blackwell KL.
Department of Dermatology, Northwestern University, 676 North St. Claire Street, Suite 1600, Chicago, IL, 60611-2941, USA, m-lacouture@northwestern.edu.
Purpose Dermatologic events (DEs) in patients with cancer treated with lapatinib, a small-molecule dual tyrosine kinase inhibitor (TKI) of epidermal growth factor receptor (EGFR [ErbB1]) and HER2 (ErbB2), were characterized. Patients and methods Nine clinical trials of metastatic cancer were included in this analysis. Lapatinib was administered at doses ranging from 1000 to 1500 mg/day as monotherapy (n = 928) or in combination with paclitaxel or capecitabine (n = 491). Patients not treated with lapatinib comprised the control group. Dermatologic events included hand-foot syndrome, rash, hair disorder, dry skin, pruritus/urticaria, skin disorder, skin infection, and nail disorder; DEs were characterized based on type, time to onset, severity, duration, and required interventions. Results Fifty-eight percent of patients treated with lapatinib monotherapy, 74% treated with lapatinib plus paclitaxel or capecitabine, and 53% in the control group developed DEs. Among patients receiving lapatinib monotherapy, 55% experienced grade 1/2 DEs, 3% had grade 3 DEs, and no grade 4 DEs were observed. The most common DE was rash (43%); all other events occurred in </=8% of patients. Most DEs developed between days 1 and 14 of starting treatment, with a median duration of 29 days. Three percent of DEs led to lapatinib dose reduction, 7% resulted in dose interruption, and 1% led to drug discontinuation. Conclusions Most DEs in lapatinib-treated patients present early, are mild to moderate in severity, and infrequently require dose modification or treatment interruption. Lapatinib-associated DEs appear to differ clinically from those associated with EGFR TKIs in both frequency and severity.
PMID: 18600445 [
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Old 07-14-2008, 02:42 PM   #6
GillianG
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Join Date: Jul 2008
Location: UK
Posts: 3
Flori and Lani

Thank you so much for taking the time to provide information and your thoughts on Tykerb. I appreciate it very much.

It's such a hard decision and everything has to be balanced up. I had a meeting today at the hospital and finally decided not to go on the ALTTO trial but instead will join the Persephone Trial - herceptin for either a year or 6 months.

During the discussion we talked extensively about the unknowns of Tykerb for early breast cancer and also the effects on my lifestyle ie. my job. I think the right decision has been made, but will never know for sure. It's not been easy deciding!

Thank you for your comments!

Best wishes

Gill
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Old 07-14-2008, 10:41 PM   #7
turbo
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Posts: 23
I wish I read your question sooner but have not checked postings for a while. I have been on Tykerb for 18 months with very little side effects. No rashes and very infrequent diarrhea which I attribute to my diet as it is very common. I am now on a trial(1 month) which is double does tykerb only 5 days on 9 days off..still feel great! Hope that helps!
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Old 07-29-2008, 09:41 AM   #8
Mary Jeanne Phillips
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Join Date: Jul 2008
Posts: 26
This is to Turbo. I may start Tykerb in a couple weeks and would like to know about the foods you are eating with it? I see you attribute the diarrhea to your diet, so am very interested to know which foods? I am mainly on a Macrobiotic food plan with eating whole grains and greens every day. All fresh egetable and no processed foods. How do you think this will fit in with Tykerb?
I hope you get thi, I really don't know how to respond to peoples responses in the forum or threads. Thanks ,Mary Jeanne
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Old 07-29-2008, 11:36 AM   #9
hutchibk
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Posts: 3,519
MJP - your diet should serve you well on Tykerb. No junk and as whole and fresh as possible is the key that works for me. Just stay disciplined with your diet and you should do well. Your body might take a little while to get used to it even on a good healthy diet, but it should settle down after a few weeks or couple months.
__________________
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 07-29-2008, 01:11 PM   #10
Mary Jeanne Phillips
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Join Date: Jul 2008
Posts: 26
Thanks for the info. I just wondered how much sugar/ desserts? breads? do you eat? That has been the biggest "cheat" for me on the Macro diet. I eat no eggs, or dairy or chicken. some fish and have now introduced some meat occasionally. I thought fiber was supposed to be terrible with Tykerb. What do you think about the FAT issue in food that U of Chicago has done their study on? Says it increases the absorption of Tykerb with food. MJ
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Old 07-29-2008, 11:20 PM   #11
hutchibk
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Posts: 3,519
Actually - we should all steer clear of sugars as much as possible, but that's another debate for another day - occasional desserts (especially dark chocolate, right girls? LOL) haven't been a problem for me. I eat a little bit of oat bread about 4-5 times a week, and it's not a problem. It's the white flour and high fructose corn syrup and transfats and processed foods and fast food stuff and fried food that really causes the problems. Excess fiber is not a good idea if you are having diarrhea, but once your body stabilizes, the fiber is not harmful. I believe it would be wise to NOT take that study too seriously as it is only theory at this point... the meds that we take have not been studied in that context and dosage... so there is no guarantee that you would get the proper efficacy from them. The point is that we want them to work as efficient as possible because this is our lives we are trying to save/lengthen. If you research it a little further, you will find that Glaxo Smith Kline scientists responded quite detailed in opposition to that theory.
__________________
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 07-29-2008, 11:40 PM   #12
turbo
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Posts: 23
I agree...My diet low sugar,dairy(dark choc. of course!) white flour, meat ..no processed foods! Also many small meals! So far doing well on Tykerb.
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Old 07-29-2008, 11:44 PM   #13
turbo
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Posts: 23
Wink

Sorry, I was vague on that posting...I do eat a small amt. of Dark choc....Also I have organic yogurt every morning with fresh fruit!
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Old 07-30-2008, 09:33 AM   #14
hutchibk
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Join Date: Oct 2005
Posts: 3,519
me too - Wallabee yogurt every morning with banana/apple/kiwi/blueberries/cantaloupe, etc etc
__________________
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 08-02-2008, 07:29 AM   #15
Mary Jeanne Phillips
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Join Date: Jul 2008
Posts: 26
Hi great supporters,
I still cannot find where I put in a new thread. My MRI was very good, no new tumors, no increases and some decreasing. Now I need to know about if it seems effective (TYKERB) on lungs liver and bones.?? Also, no one talked about the blood work, does it cause a decrease in WBC's or RBC's? Have not heard anything aout that.
My PET is Tues. so we will see how the METS look now, since May.
Thank you for all your info. It is really a blessing to me.
Mary Jeanne
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Old 08-02-2008, 07:33 AM   #16
Mary Jeanne Phillips
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Join Date: Jul 2008
Posts: 26
What are the side effects for the blood work when on Tykerb? WBC and RBC?

I am still looking for a way to submit a thread. Guess I am just useless. Thanks. MJ
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Old 08-02-2008, 08:00 PM   #17
hutchibk
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Join Date: Oct 2005
Posts: 3,519
MJP - when you click on the Herceptin/Tykerb forum, look towards the top of the page right underneath (Herceptin / Tykerb - Share your experiences or ask questions about Herceptin or Tykerb). There is a blue button that says "NEW THREAD" - click on that and you can start a new thread, titled with any title you think will draw attention to your question...
Hope that helps. YOU ARE NOT USELESS! Geez, don't make me kick your booty...

Anyway - Tykerb does not typically affect your blood count directly when it comes to RBC and WBC, it is typically any chemo that you might take with it that can run down those counts... That said, I have been on Tykerb with the chemo, Xeloda, for 15 months and have strong and normal RBC and WBC. Xeloda does not beat up my blood system at all.

My doc has told me that if we are to get results from PET, CT or MRI that shows anything new in the body or the organs, then we will add Herceptin in with my Tykerb (and I assume I will stay on the Xeloda as well, but maybe not.) I think the direction of thinking these days is that combining the targeted agents (Tykerb/Herceptin and maybe pertuzamab, the new one they are working on) is the possible key to closing all the pathways {especially and including HER1, HER3 and HER4} that HER2 cells use to escape. A combined approach of these targeted agents is suspected to hopefully put HER2 into submission. We are all hoping so. But they have figure out how to combine all three together in a way that our bodies can tolerate... but for now, we have only the first two, Tykerb and Herceptin, so that is what they are trying on some of us who progress beyond Herceptin/Chemo. That combo is showing some promise at this point... but research shows that we probably need a third agent in the combo to seal the deal... And so it goes.

Let us know what your scans say.
__________________
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."

Last edited by hutchibk; 08-02-2008 at 08:04 PM.. Reason: add info
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Old 08-04-2008, 07:07 AM   #18
Mary Jeanne Phillips
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Join Date: Jul 2008
Posts: 26
gamma, Proton etc from Hitch

Did you receive my reply to your thread???MJ
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Old 08-04-2008, 07:48 AM   #19
hutchibk
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Join Date: Oct 2005
Posts: 3,519
yes - proton is not the road we would take anyway. We will do SRT or Cyber if we ever need to do radiation...

thanks for your info!

Brenda (Hutchibk)
__________________
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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