Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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03-05-2009, 12:24 PM
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#1
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Sad news and a double blow!
Hi just wanted to share two pieces of devatating news from England. Ann Marie Rogers a very brave lady has sadly died.She took the NHS to court in 2006 following their refusal to provide her with herceptin for early stage BC and WON! Now women in Britain can get herceptin thanks to her efforts.The second piece of bad news is that the Government body who determines which drugs will be made available in England has today decided that Tykerb will NOT be funded as it has not proved cost effective! As this was probably going to be my next option I'm feeling pretty down and pretty angry .Sorry to be going on but this just seems to be another reason why our survival here from bc lags behind the States. Not the best day for news here across the pond. Ellie
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03-05-2009, 01:37 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Hi Ellie,
I just mailed off a bottle of Tykerb to a woman back east who couldn't afford it. I wish I had saved that and mailed it to you, but maybe there are others on this site who have some and we can collect it and mail it to you. I don't know what the legal ramifications would be (mailing internationally) but it is worth a try. I'll do some research and see what I can find out. Also, if you call the drug company directly, they have a Tykerb Cares program that will fund your drug (provided your Onc will write you a script for it) if you can't afford it. I'll get back to you after the week-end and see what I can come up with for you. Hang in there, sweet sister, help is on the way. Love, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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03-05-2009, 03:07 PM
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#3
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Hi Ellie, PM me again if you have more questions. I am going to go back and read your post to get your history. I have some information on IBC from my first visit to MD Anderson with Dr C.
Vickie is right, we will figure this out.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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03-05-2009, 03:44 PM
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#4
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Guest
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Some other news form the UK is that the people responsible for deciding what drugs are available (NICE) have this week decreed that Herceptin will not be used for patients who have advanced breast cancer once it has spread beyond the central nervous system (brain and spinal cord) and any patients currently getting herceptin where it has spread beyond this will have it withdrawn. In the light of the Tykerb (also known as Tyverb over here) withdrawal it seems they dont want to do much for anyone in the UK with advanced breast cancer! It seems a ludicrous situation that they will give herceptin if its in the brain but it is known that tykerb is much more effective in these circustances as herceptin does not pass the blood brain barrier as effectively. Also for brain mets they will offer whole brain radiotherapy - you may or may not be aware that there are no cyberknife machines here in the UK.
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03-05-2009, 04:06 PM
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#5
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Hi also to unregistered guest, hadn't got your post before replied last time. I totally agree with you and and have had my herceptin stopped following spread to my lymph nodes. With the withdrawal of Tykerb it seems they want us to have no options at all! Maybe these issues need legal challenges AGAIN!
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03-05-2009, 03:58 PM
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#6
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Thanks to you both for your kindness. Couldn't stop the tears when I read your posts.Am going to contact the drug company to find out how this decision will effect obtaining tykerb here if recommended by onc and whether they have any plans to appeal the decision.Will update when I have more info.Really,really,really appreciate your support. Ellie
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03-05-2009, 04:06 PM
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#7
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Check your PMs
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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03-05-2009, 04:09 PM
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#8
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Sadly, that's where we are headed here in the USA, I'm afraid. We are on path (being railroaded/fast-tracked) toward National Healthcare. The measuring technique that NICE uses is basically what "comparative effectiveness research" is, and our new administration has already appointed a Federal Coordinating Council for Comparative Effectiveness Research. I get the feeling my days are numbered as I won't be considered "cost effective." Sigh.
__________________
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; 03-05-2009 at 04:14 PM..
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03-05-2009, 06:00 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Brenda you are definitely a high maintenance lady, but worth every bit of it!
I agree, the new direction scares the bejeezes out of me.
At the same time, I have to have faith that it will work out. That it is ultimately in hands much stronger than those in our government. I sure hope so, anyway!
Perhaps what this will do is accelerate the research into truly personalizing treatment so that monies are not wasted giving expensive drugs WHERE they are not effective. Or prompt the FDA (I've got uncomplimentary words for that acronym) to find more cost effective ways of evaluating/approving drugs so that the costs to bring treatment to market are not so high that the drugs are unaffordable.
In the meantime, I guess we all have to add "political advocacy" to our list of survival skills, as if we didn't have enough to do already.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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03-05-2009, 11:16 PM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Hey sister woman - me high maintenance? Que es?
I wish I could be as nonchalant about it as you, but I don't have an ounce of confidence that we will end up on the winning end of what is coming down the pike... I fear that that's not a light at the end of the tunnel, it's an oncoming train.
__________________
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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03-06-2009, 04:44 AM
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#11
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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My worry now that herceptin (except for brain mets) and tykerb will not be available in Britain for advanced bc is that this will reduce the incentive for drug companies to progress research and thereby reduce the chances of cure.What feels even more unacceptable is the refusal of the Government to take up the offer of free provision of these drugs and payment for them only if they are effective.Women who are currently receiving herceptin for ad bc are to have this withdrawn and will only receive a chemotherapy drug on it's own.Incidentally there is only one cyberknife in Britain and this is at a private clinic! Hang on in there in the States,we need to beat this.
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03-06-2009, 06:51 AM
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#12
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Senior Member
Join Date: Jan 2007
Posts: 368
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I saw on the news just yesterday that the US admin has requested 6 billion to go towards cancer research with an emphasis on biologics. I'm hoping for the "tailored treatment" approach.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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03-06-2009, 12:35 PM
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#13
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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It's so curious to me that since Herceptin DOES NOT cross the BBB, why is NICE approving it only for CNS mets, but no extracranial mets? I suspect that they know that it won't treat brain mets and that patients will effectively die on Herceptin treatment for brain mets, sooner rather than later, and that will save the system money. If they were to treat brain mets with something that might actually work (i.e. Tykerb and Cyberknife as options), and the organ or bone mets with Herceptin, then the patient might live an untold number of reasonably healthy years in maintenance treatment on those drugs, but it would become more expensive than they believe a life is worth. Morons. This PISSES me off.
__________________
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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03-06-2009, 12:42 PM
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#14
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Amen, Brenda! I agree with you totally. It comes right down to what a life is worth..and apparently it's not worth very much (must be inflation, huh?).
Love, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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03-06-2009, 12:56 PM
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#15
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Totally agree Brenda.What's even more annoying is that the Prime Minister has very recently been on national TV telling the Nation that he is committed to doing everything to stamp out cancer and remove the fear that thousands have suffered over the years! What a load of rubbish.He also tells us that he has met your new President and is strengthening the special relationship between our countries in all areas including healthcare. Frankly the only strength i've got is from the brilliant,courageous,dynamic women who access this support group. Ellie
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03-06-2009, 02:45 PM
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#16
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Ellie,
I am deeply saddened to learn that Marie Rogers has lost her battle. Many women owe their life to her effort in achieving success in court for early stage patients.
As far as the rest of your news - I am equally upset.
Has the entire world gone mad?
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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03-07-2009, 03:46 PM
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#17
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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I'm sorry to hear about the loss of another brave woman. I still don't know why some in the US want to go this route. I'm trying to be a-political here, out of respect for the site, but I'm about to explode in a non-political way!
__________________
For Nicola
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03-07-2009, 09:23 PM
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#18
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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'Never, never, never give up'
I've always been grateful to have good insurance whenever I was diagnosed with a serious illness. There was one time (in 2003) that I proposed to hubby that perhaps we should drop the insurance (after my MRI showed stable nodules) to save money since I had lost my job. He mentioned it to his Dad over their morning coffee and my Father-in-law began to pay for our monthly premium. (He trusted us so much that he just give hubby a check book and eventually put hubby's name on the account.)
Barely three months after we had taken his kind (and smart)offer , I was diagnosed with invasive breast cancer. The total bill amounted to $60,000.00 - that was cheap compared to the Herceptin stuff in 2007. (I think each 3 weeks of TCH and labs cost over $25,000.00. And MUGA scan was very, very expernsive - over $25,000.00 also[?])
This round of recurrence we've been relying on my side of the family - foreign aid - after I had lost my job 'again'. And yes, we do have insurance - the very expensive, all self-paid COBRA.
My Mother had fought for my Oldest Sister's pneumonia shots (some very expensive antibiotic back in the 60's) when the hospital demanded for prepayment of the drug. "Never, never, never give up", so said Sir Winston Churchill. I believe my Mother has been immersed in this WWII spirit all her life.
Perhaps I have inherited her fighting spirit - thank you, Mom. And thanks to all the fighters like Ann Marie Rogers.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 07-03-2009 at 09:10 PM..
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03-08-2009, 01:16 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Brenda, I'm not at all nonchalant about it. I'm scared to death, but feel utterly powerless to do anything about it.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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07-03-2009, 09:03 PM
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#20
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Guest
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Sad news and a double blow
Extremely sad news.
Anyone who was in Sheffield will know what an integral part he was in the whole operation there.
He gave me tough love when I needed it and advice when I didnt want to hear it.
I always felt like I was in safe hands with the man.
Best wishes to his family.
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