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Old 08-03-2015, 11:40 AM   #1
karina14
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Join Date: Mar 2013
Location: Toronto, Canada
Posts: 23
IT Herceptin needed in Canada

I watch with so much interest the IT Herceptin threads with so many success stories and I am so happy for all of you that there is an answer to this ugly threat. This time I was hit directly. My last head MRI showed that the brain disease I was trying to control since Jan 2014, came back more aggressive and also went to the leptomeningeal area of the brain. I know I am in a deep trouble and have to move fast.

I am looking to get IT Herceptin, and if possible to get it in Canada. Yet, there is no trial for IT Herceptin I could find, I am still hoping that someone might give me some more information. I know about the other trial sponsored by Western University from Chicago, with all the other sites...

I have followed the previous threads (Paul, Mario - great, great job for passing on the information and fighting for your lovely wives!). Paul, I emailed you about 1 year ago to find out more about Nina's treatment and how it works, just then, my brain disease was not meningeal but deep brain mets, now I need to handle them both. I don't think TDM1 helped with my deep brain mets (as a new study suggests) but worked outside the brain.

Health Canada and my private insurance does not cover any treatment in US, so it will be challenging with IT Herceptin as it might be a long term treatment if it works.

I need all the help in the world! Please help with information if you have it....

Hugs to all of you! Cristina
__________________
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 08-03-2015, 09:43 PM   #2
forher
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Re: IT Herceptin needed in Canada

Cristina,
I'm so sorry to hear your news and I wanted to reach out to you. I know this must be a very scary time for you. Plus you have a little one! I don't have any knowledge of trials in Canada, but I really hope someone responds here or PMs you. I sincerely hope you find a trial near you or can you apply for compassionate use by contacting Genentech directly? If you can, please keep me posted on how you do. All my best.
__________________
June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 08-04-2015, 12:54 AM   #3
Pamelamary
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Location: Melbourne, Australia
Posts: 494
Re: IT Herceptin needed in Canada

Can't help directly, but thinking of you and I am sure some of the veterans of IT Herceptin will chime in with more concrete suggestions. Living in Australia, I know the same problems would arise, so good luck!
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 08-05-2015, 08:17 AM   #4
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
Re: IT Herceptin needed in Canada

Karina,
Sorry about not getting back to you earlier. I have spent 67 of 77 weeks on the road for work. The argument with your doctor should be that Ommaya reservoirs are commonly used for the treatment of brain cancers, and that Herceptin is the primary drug for your lesions. Therefore IT Herceptin should be approved for use. Tell your health care team you want to start at 40 mg per week for four weeks to confirm that there are no issues, and then you want to go to 1.6 mg/kg weekly for 16 weeks. This is similar to the protocol that will be run at the University of Southern California for Perjeta that should be opening soon. PM again today. I am in the office for at least two more weeks and can spend time getting you help. On the PM, please send the cancer center and doctor. I am not sure if I can get this done, but I will try.
RolePaul
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Old 08-05-2015, 03:29 PM   #5
Saygoon
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Location: Hot Springs, South Dakota
Posts: 158
Re: IT Herceptin needed in Canada

Wishing you the best. I am on IT Herceptin and had to travel from South Dakota to Austin to get it. Luckily my daughter lives 3 hours from Austin so I live with her. Like you I was frantic! But don't give up I believe that I was led to where I am - it wasn't just chance. Believe that you will find your hope as well.
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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Old 08-16-2015, 08:45 AM   #6
karina14
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Join Date: Mar 2013
Location: Toronto, Canada
Posts: 23
Re: IT Herceptin needed in Canada

A quick update for ladies in Canada looking for IT Herceptin...
I was not successful in my quest to convince my oncologist to treat my brain with IT Herceptin. It seems that nobody does it in Toronto and there are no trials in Canada. I will continue trying...
__________________
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 08-16-2015, 12:15 PM   #7
Saygoon
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Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
Re: IT Herceptin needed in Canada

Keep trying - call every onc in phone book if u have to. Dont give up!!
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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Old 08-23-2015, 08:12 PM   #8
broccoli
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Join Date: Dec 2013
Location: Toronto, Canada
Posts: 26
Re: IT Herceptin needed in Canada

You might also want to ask your oncologist about getting into one of the ONT-380 trials. While the one being run out of PMH has previous TDM-1 as an exclusion (which seems odd if the TDM-1 is current, tolerated and working) there are two other trials that you may be eligible for and, with any luck, since PMH is already administering ONT-380 as part of a trial perhaps you will be allowed to receive your treatments there. I don't know how much of a long shot it is, but it's worth asking. http://www.oncothyreon.com/clinical_trials/ont-380.html
__________________
2012-Feb-29 D-Day: IDC ER-/PR- HER2+++ Grade 3, Stage 3 - several biopsy proven positive nodes
2012-Mar - July: Neoadjuvant FEC-D + Herceptin (6 rounds)
2012-Apr: DVT in arm that received chemo - put on LMW Heparin
2012-Apr: Port installed
2012-Sep-7: Lumpectomy + ALND - pCR with residual DCIS
2012-Oct: Switched from LMW Heparin to Warfarin
2012-Oct-Nov: 30 days of rads
2013-Jan: Entered Adjuvant Metformin trial (Metformin or placebo for 5 years)
2013-Jan: Switched from Warfarin to Xarelto
2013-Mar: First signs of lymphedema
2013-May-16: Last Herceptin (17 doses in total)
2013-Jun: Port removed and anticoagulants stopped
2014-Mar: Lymphedema worsened and became unresponsive to treatment
2015-Apr: Started PENTOCLO protocol to attempt to improve radiation fibrosis
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Old 08-24-2015, 04:45 PM   #9
karina14
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Join Date: Mar 2013
Location: Toronto, Canada
Posts: 23
Re: IT Herceptin needed in Canada

Thank you! I don't qualify for the Neratinib + TDM1 trial from PMH because I have already been treated with TDM1 and I had progressed. But I looked at the trial from Dana Farber with Neratinib and Herceptin and I would qualify to something like that (to treat the deep brain).
However here comes the question: Can someone from Canada be part of a trial in US and do the treatments in Canada (this way most of the procedures would be covered by OHIP)? From the drug company perspective I am guessing would not be a problem.... but who knows?
__________________
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 08-24-2015, 07:04 PM   #10
broccoli
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Join Date: Dec 2013
Location: Toronto, Canada
Posts: 26
Re: IT Herceptin needed in Canada

A friend of mine in Toronto was part of a trial in Detroit. The only out of pocket costs she had was travel to Detroit periodically.

-Laura
__________________
2012-Feb-29 D-Day: IDC ER-/PR- HER2+++ Grade 3, Stage 3 - several biopsy proven positive nodes
2012-Mar - July: Neoadjuvant FEC-D + Herceptin (6 rounds)
2012-Apr: DVT in arm that received chemo - put on LMW Heparin
2012-Apr: Port installed
2012-Sep-7: Lumpectomy + ALND - pCR with residual DCIS
2012-Oct: Switched from LMW Heparin to Warfarin
2012-Oct-Nov: 30 days of rads
2013-Jan: Entered Adjuvant Metformin trial (Metformin or placebo for 5 years)
2013-Jan: Switched from Warfarin to Xarelto
2013-Mar: First signs of lymphedema
2013-May-16: Last Herceptin (17 doses in total)
2013-Jun: Port removed and anticoagulants stopped
2014-Mar: Lymphedema worsened and became unresponsive to treatment
2015-Apr: Started PENTOCLO protocol to attempt to improve radiation fibrosis
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Old 10-03-2015, 08:15 PM   #11
norkdo
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Location: ottawa canada
Posts: 367
Re: IT Herceptin needed in Canada

Karina, I am in Canada too. My sister in law went outside the country to UK for cancer treatment (eye cancer, actually) and she learned that Health Canada's policy is to reimburse you on your return, whilst giving you no indication ahead of time, prior to your committing to that treatment. But they regularly reimburse cancer patients upon their return.
Good luck.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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