HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 07-17-2018, 07:52 AM   #41
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 364
Re: Treatment after Kadcyla?

Jules

My wife's daughter is visiting from Texas with the grandkids. Ill have to wait until Wednesday to call Genentech. The point is, the dose of Herceptin in Kadcyla is sufficient to
inhibit Her2 Neu protein even though it is lower (3.6mg/kg every 21 days rather than 6mg/kg every 21 days. Ill find out why but its purely an intellectual exercise. Perhaps the chemo attached to the Herceptin in the Kadcyla molecule makes the drug bind more tightly to the Her2neu protein receptor. Im intellectually curious but its not clinically importantapparently. Whoever told you the Herceptin (Trastuzumab) in the Kadcyla molecule is just a carrier for the chemo seems to be incorrect. I printed a long article about Kadcyla and it states again and again that the Herceptin part is active

Paul
donocco is offline   Reply With Quote
Old 07-17-2018, 11:12 AM   #42
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi Paul
Interesting! It was my Oncologist that told me it was only a carrier.

Thanks for doing this Paul!

Juls
Juls is offline   Reply With Quote
Old 07-18-2018, 01:29 PM   #43
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 364
Re: Treatment after Kadcyla?

Jules

I contacted Genentech and it seems my reasoning was basically correct. The Emtansine attached to the Trastuzumab molecule causes the complex to bind tightly yo the receptor allowing a lower Trastuzumab (Herceptin) dose to have a definite anti-Her2Neu effect

The Herceptin (Traztuzumab) in Kadcyla is active anti Her2Neu drug not a carrier molecule. Maybe you can bring this up with your oncologist. He or she can call Genentech from the UK

Paul
donocco is offline   Reply With Quote
Old 07-19-2018, 06:29 AM   #44
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi Paul,

Will do!
I wonder if she was just brushing me off or didn't really know!

Thanks again.
Juls
Juls is offline   Reply With Quote
Old 07-19-2018, 11:52 AM   #45
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 364
Re: Treatment after Kadcyla?

Juls

It is hard to say. I dont know the politics of health care in Scotland. If she is brushing you off that is wrong and immoral. Im sure it is obvious to them you are non-confrontational.
Obviously it is wrong and dangerous to make statements about complex medications that you havent researched thoroghly.

You are a private person, very "nice" (for lack of a better word) but I would guess
you are very complex and you keep a lot inside without expressing it. Is there a friend or family member who can do the confronting for you? If so, contact that person.
donocco is offline   Reply With Quote
Old 07-20-2018, 04:30 AM   #46
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi Paul,

Not sure if any of us know Health Care Policy here! It's only when flung into it that you become aware of the rules and regulations. I certainly didn't realise how many drugs not allowed here.

I did have my Husband with me at last 2 appts. He was not happy with last consultation in particular. He felt that we got her "on the back foot" as she did not realise I was well informed!

Juls


PS - Yes - I am a bit of a closed book!!
Juls is offline   Reply With Quote
Old 07-20-2018, 10:29 AM   #47
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 364
Re: Treatment after Kadcyla?

Juls

About 38 years ago when I was in the Public Health Service I was stationed in Phoenix Arizona. I was so glad to get a transfer from the isolated Indian Reservation.

Anyway I had a girlfriend from England, Marilyn. She was sweet, introverted, very sensitive and very very artistic. I guess what attracted me to her was her sensitivity because the overly intellectual person will bond to his opposite.

I dont want to get into England vs Scotland "problems" but my guess is that this personality is common in the United Kingdom. Just a guess
donocco is offline   Reply With Quote
Old 07-23-2018, 05:02 AM   #48
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi Paul

Reserved is a good word!

Juls
Juls is offline   Reply With Quote
Old 07-23-2018, 05:04 AM   #49
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi All,

On another note :-

After nearly 6 weeks wait for "an appt in a few days" - just received letter for MRI appt in 2 weeks time!
Juls is offline   Reply With Quote
Old 07-26-2018, 06:06 PM   #50
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,585
Re: Treatment after Kadcyla?

Juls-are you looking into any clinical trials? 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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka TBFW (this better fu*king work)
JAN 2019 - TBFW aka ZW25 seems to be keeping me stable. In 3 months I'll be living with this mf/MBC 12 years.
SoCalGal is offline   Reply With Quote
Old 07-27-2018, 11:20 AM   #51
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi Flori,

Good to hear from you.

Haven't looked into any trials recently. Haven't been offered any either!

Have you been taken off all treatment at the moment?

I'm on Aromasin & Zometa (12 wkly) only with nothing for Her2. It's the first time in over 5 years that I haven't had Herceptin.

I will have a look at the trials you mention in your other post.

Take care

Juls
Juls is offline   Reply With Quote
Old 07-27-2018, 11:25 AM   #52
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Just been told that MRI reports taking 4-6 weeks minimum at the moment. So not only have I waited 7 weeks for appt etc. I have now to wait another 2 weeks after MRI for Doctor appt & might not get any info!

So much for urgent!
Juls is offline   Reply With Quote
Old 07-27-2018, 11:32 AM   #53
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,585
Re: Treatment after Kadcyla?

Hi Juls—glad you’re on something!! Consensus in the mets community is staying in herceptin even after progression offers benefit. Hope your onc will add it back in. Nothing to loose!!

I am off all treatment - I was trying to stay washed out so I. Hold jump on a trial. If I’d known it took so long I would have done something but now it’s close to trial time I HOPE!!
Sending hugs...❤️
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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka TBFW (this better fu*king work)
JAN 2019 - TBFW aka ZW25 seems to be keeping me stable. In 3 months I'll be living with this mf/MBC 12 years.
SoCalGal is offline   Reply With Quote
Old 07-27-2018, 12:20 PM   #54
valleygirl
Senior Member
 
Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 126
Re: Treatment after Kadcyla?

Hi SoCalGal,

What trial are you going on? I've been approved for the HER2CLIMB, waiting to hear if I get approved for DS-8201a in Human Epidermal Growth Factor Receptor 2 (HER2)-Positive Breast Cancer. So hard to decide. I know you don't lose your hair on the HER2Climb and side effects are doable. I haven't got a straight answer about hair loss with NCT03248492 and I think effects may be worse. I haven't been on any treatment for 8 weeks now. I haven't been able to find anyone on NCT03248492 to ask. Always a roller coaster ride
__________________
valleygirl is offline   Reply With Quote
Old 07-27-2018, 01:10 PM   #55
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi Flori.

Yes- thought it would still be prescribed and give me some benefit. When I asked a few weeks ago was told "No" as I had failed it!


Similar to you, Doctor wasn't giving me another drug until ablation procedure. Just wasn't expecting 7+ week delay. Like you would have done something sooner.
In hindsight should have insisted on staying with Kadcyla until ablation due.

Fingers crossed for trial.

Juls
Juls is offline   Reply With Quote
Old 07-27-2018, 01:26 PM   #56
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi Valleygirl,

Both these trials sound interesting. Can't find much info about NCTO3248492 trial either.

Juls

Last edited by Juls; 07-30-2018 at 01:54 PM.. Reason: addition
Juls is offline   Reply With Quote
Old 07-27-2018, 02:40 PM   #57
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,585
Re: Treatment after Kadcyla?

Juls, hope you convince your doc to add back in herceptin. It's your life. There is support material, you can spend some time googling if you need. I wish I could find my file, if I do, I'll post.

Valley girl - UCLA has DS8201a open slots. Dr said no hair loss in her patient who is on it - side effects not too bad, early results very good. DS8201a (NCT03248492)

Other promising trials are ZW25 - which is at USC. ZW25 (NCT02892123)
I haven't met with them yet to know anything other than the slots open are single agent targeted.

If you can get tucatinib with xeloda and herceptin arm, that is also having VERY GOOD results and will be approved soon I believe. I have a friend doing very well on her2climb, no hair loss, she's on herceptin/xeloda/and presumably Tucatinib, sine it's been a year and she's stable and doing well. No one knows for sure, since it's double blind. Also--Tucatinib is small molecule, so good for crossing BBB.

SoCalGal
__________________
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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka TBFW (this better fu*king work)
JAN 2019 - TBFW aka ZW25 seems to be keeping me stable. In 3 months I'll be living with this mf/MBC 12 years.

Last edited by SoCalGal; 07-27-2018 at 02:44 PM..
SoCalGal is offline   Reply With Quote
Old 07-30-2018, 01:46 PM   #58
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi Flori,

I'll ask again for Herceptin.
Good luck tomorrow re trials info.

Juls


Just received Ct appt for 1 week after MRI. Both are for abdomen scans. Seriously?
Juls is offline   Reply With Quote
Old 08-31-2018, 03:35 PM   #59
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 560
Re: Treatment after Kadcyla?

Hi All,

Just an update!!

Saw Consultant Radiologist re ablation this week. (Originally referred to him 5 years ago & then again 3 months ago.) To be honest wasn't sure he actually existed.

I am suitable for liver ablation & down as high priority! So should be done in next 4-5 weeks. Downside is that area concerned is on surface of liver & guess where nerves are on liver - so more discomfort/pain for me!
So far Aromasin working. Just as well because they still refuse to give me Herceptin with it.


Juls
Juls is offline   Reply With Quote
Old 08-31-2018, 08:01 PM   #60
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,037
Re: Treatment after Kadcyla?

Glad you are a high priority for the procedure ... hope they can have good pain meds available for your recovery.


Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
Carol Ann is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 09:58 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2019, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter