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Old 04-17-2015, 09:26 AM   #21
karina14
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Location: Toronto, Canada
Posts: 23
Re: Kadcyla Side Effects

Adding more side effects after my 3rd treatment with TDM1: I continue to cough and have breathing problems on exertion, some kind of a breathing spasm when I yawn, constipation during each cycle, neuropathy on the legs / toes (I resolve them keeping my legs wrapped in a hot blanket - it gets much better after I keep them for 30 min) and the last one that really bothers me much is the dry mouth (I drink 2L of water a day), especially when I talk, I have no saliva in my mouth. Has anyone found a solution for the dry mouth?
__________________
2011/03 - dx IDC (15 weeks pregnant), Rx mastectomy, 1.5 cm, stage 1B, grade 3, ER-/PR-/HER2+, 1/20
2011/04 - started 3xFEC while pregnant (2 sessions)
2011/06 - daughter born healthy @36 weeks
2011/08 - 3xTaxotere & Herceptin, followed by 1 year of Herceptin, no rads
2013/09 - mets to liver, bones & lungs, started weekly Taxotere + Herceptin
2013/10 - stopped Taxotere after 4 weeks due to severe side effects, stay on weekly Herceptin, pleurodesis to right lung (previously 2 x thoracentesis)
2014/01 - Dec CT scan shows good liver response but progression to bones, Pamidronate plus Herceptin only
2014/01 - brain & spine MRI (symptomatic) shows very large number of mets in the brain, do urgent WBR (20Gy/5 fractions)

2014/02 - Herceptin, Perjeta, Abraxane, XGeva
2014/08 - stopped Abraxane, stayed on Herceptin, Perjeta, XGeva
2014/12 - brain mets progression, second round of WBR (25Gy/10 fractions), lungs stable, light activity in liver
2015/02 - progression in lungs (lymphangitic carcinomatosis), stop Herceptin / Perjeta, start TDM1
2015/07 - stable on the extra cranial disease (lungs, abdomen)
2015/07- brain MRI show tumors went to the leptomeningeal area and also new one started to grow deep brain, still on TDM1, not sure of next step ....
2015/08 - looking for help to get IT Herceptin in Canada






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Old 04-17-2015, 11:06 AM   #22
waterdreamer
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Re: Kadcyla Side Effects

I am no longer on Kadcyla, and I did start a thread on its side effects when I was on it.
My experience is that it is amazing at getting rid of bone mets. My bones have remained clear. I will update if that changes. My liver enzymes have returned to normal. My platelets remain below 100.
I did get brain mets while on Kadcyla, so in my case it did not cross the BBB. Precision Radiation and catching it early makes a big difference.
I stopped because it was drying out my whole body. I had a hard time getting my balance in the mornings, because my body just felt "dry". I also did not like the sclerosis it caused in my lungs. It is a great drug, and if I have to go back to chemo. I would go back on Kadcyla, since I never progressed on it. I just needed a break and that meant going off trial.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 04-18-2015, 12:08 PM   #23
Dakini52
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Re: Kadcyla Side Effects

Are Kadcyla and TDM1 the same thing?
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 04-18-2015, 02:01 PM   #24
KDR
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Re: Kadcyla Side Effects

Yes.

Karen
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Old 04-21-2015, 05:19 PM   #25
phil
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Re: Kadcyla Side Effects

my wife had great success w/ t dm-1. ned over 3 yrs . she got some dry mouth relief from biotine. battled low platelets by reducing dose to 3.0, stretching out tx to 4 -6 weeks at times . our version of neo paleo diet , plus sharks liver oil and chlorophyll from health food store . to support bone marrow. stayed on for 4 yrs due to great response but she came off last oct. due to signs of liver issues - caught early. drug irritation to liver , cancer damage and ablation led to varices around liver, spleen ( swollen veins ) still ned , no serious liver issue.
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Old 05-10-2015, 02:00 AM   #26
Rupali
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Re: Kadcyla Side Effects

I have done 9 cycles of Kadcyla now. Everything going fine and I am able to manage with the side effects too. Only concerning thing is that the CA 15.3 seems to be increasing gradually. I am very worried, is the drug working or not.
It was at 165 in November 2014, went down to 113 in end of December and is now back at 171 with gradual increases in steps. Anyone else has experienced similar.
Phil and others please comment
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Old 05-10-2015, 02:09 AM   #27
Rupali
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Re: Kadcyla Side Effects

I must add to my previous post that when my recurrence was found then CA 15.3 was at 306
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Old 05-10-2015, 04:57 AM   #28
Mtngrl
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Re: Kadcyla Side Effects

Dear Rupauli,

I've never had tumor markers, so I've been spared the anxiety that comes with watching them go up. That must be pretty nerve wracking.

What does your doctor say?

Amy
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Old 05-10-2015, 05:26 AM   #29
vqtilley
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Re: Kadcyla Side Effects

Sympathies to you in watching this worrying indicator. My doctors aren't tracking TMs either so like Mtngrl I'm exempt from the anxiety. (One less thing to obsess about!) Otherwise, reading about the correlation of CA 15.3 with progression I can see why you're worried, but it does seem that, without some other indication of trouble, such as imaging, there doesn't seem much you can do so it might be best to sit back for now and assume the Kadcyla is working. Also, not to take away from your monitoring this important tumor marker, I did find one slightly old article mentioning multiple causes of non-cancerous ("false") elevated CA 15.3 levels (the emphasis here is on hypothyroidism) which might be worth a look:
https://www.researchgate.net/profile...bddcc99a8a.pdf
It mentions several conditions that can cause elevated CA 15.3 and closes with this: "In conclusion, elevation of CA 15-3 constitutes a sign of alarm in patients under follow-up for breast cancer and usually leads to an extensive and unnecessary search for relapse. Since its sensitivity and specificity are not 100%, we have to rule out other conditions causing false elevations, and hypothyroidism is one of them. In our opinion, clinical symptoms of thyroid dysfunction must be investigated and thyroid hormones evaluated together with the other causes of false elevation of serum CA 15-3 before performing more aggressive studies for detecting relapse in breast cancer patients. Routine determination of CA 15-3 is not recommended in the follow-up of breast cancer patients."
__________________
Feb 2012: diagnosed with 1 cm lesion rt breast, DCIS left breast, Stage IV ER+/HER2+
Apr 2012: bilateral partial excisions; confirmed met to left proximal femur, long gamma nail inserted to stabilize femur:
May 2012: radiation to femur: chemo with Trastuzumab + taxane.
July 2012 thru Mar 2015: started maintenance regime Herceptin+Arimidex+Denosumab, NED
May 2014: recurrence in right acetabulum: 15 fractions radiation
Jan 2015: lesion in left cerebellum: resection & gamma knife treatment
Mar 2015: small mets confirmed in rt axilla, rt breast, T7 vertebra, possible met as isolated spiculated pulmonary nodule left lung
27 Mar 2015: start Kadcyla, discontinuing aromotase inhibitors; within two weeks axilla/rt breast lesions are shrinking noticeably
18 April: resume letrozole
May: all lesions disappeared or dormant
May, Aug, & Nov 2015: every 3 month MRI follow-up brain/spinal scans: all negative for CNS disease
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Old 05-11-2015, 11:48 AM   #30
phil
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Re: Kadcyla Side Effects

i agree with talking with your doc - have they treated other pts w/ t dm-1 ? if not encourage them to ask genentech . U must have had at least one set of scans by now ? scans are much more of a sure thing than mrkers. i have heard of markers going up at first on t dm-1 , my memory says for a few doses , i have heard possibly related to tdm-1 killing off cancer and dead cells in blood increasing . do u get a cea reading ?
are u her2 only ? those w/ er+ and her2 seem to get less effect from t dm-1, and may benefit from anti hormonal .
if we lived in a tx world that truly respected our stage iv rights , we could try perjeta too and see if mrkers fall. but not with our present fda in this country .
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Old 05-14-2015, 07:12 AM   #31
Rupali
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Re: Kadcyla Side Effects

After 6 cycles we got a Pet Scan done and the doctor said that there wa almost 90% regression. I feel well too. Only thing worries me is teh CA 15.3 increasing. I get CEA also done and that too is increasing. I am now done with 9 cycles of Kadcyla and the doc told me that we would go till 12 cycles before we do another scan. I am ER+ and Her2+ and I am also on Aromatese Inhibitor and monthky Zoladex to suppress the ovaries. In addition I also take monthly Xgeva
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Old 05-19-2015, 02:08 PM   #32
karina14
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Location: Toronto, Canada
Posts: 23
Re: Kadcyla Side Effects

I have the 5th cycle coming up and I am struggling with the dry mouth during the 3 weeks between treatments. Tried Biotene mouth wash but is not working for me. Other ideas?

Also the neuropathy has increased as well as the pain in the knees and ankles I am extremely fatigued and I handled previous treatments well.
__________________
2011/03 - dx IDC (15 weeks pregnant), Rx mastectomy, 1.5 cm, stage 1B, grade 3, ER-/PR-/HER2+, 1/20
2011/04 - started 3xFEC while pregnant (2 sessions)
2011/06 - daughter born healthy @36 weeks
2011/08 - 3xTaxotere & Herceptin, followed by 1 year of Herceptin, no rads
2013/09 - mets to liver, bones & lungs, started weekly Taxotere + Herceptin
2013/10 - stopped Taxotere after 4 weeks due to severe side effects, stay on weekly Herceptin, pleurodesis to right lung (previously 2 x thoracentesis)
2014/01 - Dec CT scan shows good liver response but progression to bones, Pamidronate plus Herceptin only
2014/01 - brain & spine MRI (symptomatic) shows very large number of mets in the brain, do urgent WBR (20Gy/5 fractions)

2014/02 - Herceptin, Perjeta, Abraxane, XGeva
2014/08 - stopped Abraxane, stayed on Herceptin, Perjeta, XGeva
2014/12 - brain mets progression, second round of WBR (25Gy/10 fractions), lungs stable, light activity in liver
2015/02 - progression in lungs (lymphangitic carcinomatosis), stop Herceptin / Perjeta, start TDM1
2015/07 - stable on the extra cranial disease (lungs, abdomen)
2015/07- brain MRI show tumors went to the leptomeningeal area and also new one started to grow deep brain, still on TDM1, not sure of next step ....
2015/08 - looking for help to get IT Herceptin in Canada






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Old 05-27-2015, 05:49 AM   #33
Rupali
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Posts: 148
Re: Kadcyla Side Effects

Has anyone experienced dizziness while lying down on bed while on Kadcyla. I am on Kadcyla (9 cycles done). Till 8 cyckes I had not experienced any major side effects of Kadcyala. However after the 9th cycle I am experiencing little nose bleed, back pain and now dizziness while lying down. Very worries what is causing this. Please reply
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Old 05-27-2015, 05:56 PM   #34
phil
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Re: Kadcyla Side Effects

Lorraine did not have dizziness , but nose bleed could be low platelets. Lorraine had to reduce dose to 3.0 after 7 cycles to keep plats above 50,000. has neuropathy , mostly from xeloda but t dm-1 definitely added to it . we fought to stay on it as response was so good .probably went a yr too long on it in hindsight . stopped in oct 2014 . still ned but neuropathy is painful. plats still only 65,000 but L. is living a very full life. just saw our 8th grandchild in 8 yrs born last month.
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Old 05-30-2015, 09:15 PM   #35
linn65
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Re: Kadcyla Side Effects

I do have dry mouth, so I brush my teeth several times a day and rinse with biotene. My biggest complaint is my knee's,ankle and feet are killing me. Someday's like tonight seem hardly bearable. I am going to try wrapping them in a hot blanket like previously discussed, or I will be cutting my limbs off shortly. Also, I do notice when my hands are hurting they are ice cold. I keep thinking is this really neuropathy???? My finance has neuropathy and his feet hurt all the time but they burn all the time it seems different. It does not hurt to his knees either.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 05-31-2015, 11:47 PM   #36
waterdreamer
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Posts: 199
Re: Kadcyla Side Effects

Please make sure you drink a LOT!! Also take potassium/magnesium - I take twinlabs. If it continues, you may want to speak to your doctor about lowering the dose.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 11-24-2015, 06:13 PM   #37
CoolBreeze
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Re: Kadcyla Side Effects

After two years of remission with only perjeta/herceptin, cancer exploded all through my abdomen and lungs. Pain was intense and I was getting pretty sick. Nov 8 I did my first Kadcyla. I had a rough ten days (nausea, pain, fatigue, constipation, heartburn, headaches, not able to walk) but am feeling better. Abdominal pain is much better and I've been on heavy duty pain killers and I am backing off. I'm not sure if it's because they changed my meds or if TDM-1 is working.

I get my 2nd tx December 2, so I'll see what it does to blood and liver then. Am going to need some better anti-nausea with this and a heartburn med. I'm at the point where I have anorexia-cachexia and I can't eat and am down in the 80s which is a bad sign. I'm hoping I get miracle #2 with Kadcyla as my son is getting married in May.

This is my 8th chemo and I've been in continuous treatment for six years, so I don't think anything would be easy at this point. But I'll take it for now.

Thanks for sharing your experiences.
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
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Old 11-24-2015, 06:46 PM   #38
phil
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Posts: 393
Re: Kadcyla Side Effects

lorraines s/e got better after 3 cycles or so . I know u know this , but u need nourishment to help keep bone marrow strong, blood counts up - juicing etc. to keep kadcyla going . keep anti estrogen tx - zometa to block that pathway . we used paleo diet , (steak, greens ) whole pineapple weekly ,( heard bout papaya but didn't use it ) to get 7 full strength doses in , as plats went below 50,000 for awhile. we pushed for aggressive tx. because of good response . markers dropped right away , and could see cancer disappearing at ct scan after 3 or 4 doses . did a trick a couple times - took a 15 ' brisk walk just before blood draw , raised plats 10,000. did reluctantly have to reduce dose to 3.0, but still cancer went away . Here's Praying the same for you
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Old 11-25-2015, 07:50 AM   #39
vqtilley
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Posts: 12
Re: Kadcyla Side Effects

Hi CoolBreeze - So sorry to hear you've been going through such a hard time! The pain factor sounds dreadful and the cachezia must be a major battle. But I'm glad you're on Kadcyla. Not to generalize, of course, but I had a major progression last April after three years on Herceptin and TDM-1 turned it around completely: my suddenly growing lesions in axilla, breast, lung, bone all shrank, vanished or went dormant. No sign of CNS recurrence, either, which was the big worry after my cerebellum lesion last January. I did have a lot of trouble with nausea on Kadcyla for a while: we tried all the usual anti-emetics, even a cannabis derivative, nothing really worked and I was miserable, but after a few months the nausea just lifted and disappeared, I think as my system simply adjusted to the drug. My lasting s/e on Kadcyla is fatigue. I still have about 2/3rds of a day's worth of energy which is sometimes hard to manage with my job. But the cancer is under control, so that's what counts. Good luck, stick it out ... keep us posted?
__________________
Feb 2012: diagnosed with 1 cm lesion rt breast, DCIS left breast, Stage IV ER+/HER2+
Apr 2012: bilateral partial excisions; confirmed met to left proximal femur, long gamma nail inserted to stabilize femur:
May 2012: radiation to femur: chemo with Trastuzumab + taxane.
July 2012 thru Mar 2015: started maintenance regime Herceptin+Arimidex+Denosumab, NED
May 2014: recurrence in right acetabulum: 15 fractions radiation
Jan 2015: lesion in left cerebellum: resection & gamma knife treatment
Mar 2015: small mets confirmed in rt axilla, rt breast, T7 vertebra, possible met as isolated spiculated pulmonary nodule left lung
27 Mar 2015: start Kadcyla, discontinuing aromotase inhibitors; within two weeks axilla/rt breast lesions are shrinking noticeably
18 April: resume letrozole
May: all lesions disappeared or dormant
May, Aug, & Nov 2015: every 3 month MRI follow-up brain/spinal scans: all negative for CNS disease
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Old 06-27-2016, 11:59 AM   #40
gramen
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Join Date: Apr 2016
Posts: 9
Re: Kadcyla Side Effects

Hi all, I'm 3 months into this stage iv world. Had the 1st scan after 3 rounds of navelbine/herceptin/perjeta, lymph nodes resolved, largest liver tumor shrunk from 4.5 cm to 3, but two other 1 cm tumors are "brighter".
Dr said we would 2 more rounds and rescan, and discussed tdm1 as next line. I've read that some Dr's aren't seeing robust responses to tdm1 after navelbine...do you have any experience with this? Here's an example:
http://www.onclive.com/peer-exchange...-breast-cancer
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