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Old 05-18-2007, 05:45 AM   #1
Andi
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My goodness Joy - you do have a lot going on! I hope your daughter's birthday party is a big success. My only suggestion regarding starting the Tykerb would be to have an "Immodium" Plan. You wouldn't want to have to be hanging out in the bathroom during the garage sale. I am so sorry to hear about your dog, pets have always been important to me, especially when they have been there during our b/c battles. It stinks when things seem like they pile up on us at times. I am hoping and praying for you that this combo will sock it to your liver mets and at least get you to stable disease before you know it. I also hope that in 3 months things will ease up a bit on the Tykerb. Enjoy your busy weekend and birthday wishes to your daughter.
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Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 05-18-2007, 08:04 AM   #2
Lolly
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Joy; first of all YEAH!!!! With the drugs coming today and you getting started on them your anxiety level should decrease. We all know that lost feeling when we're in limbo waiting to start a new treatment and knowing the cancer is unchecked. I'm so glad you're getting started, and hopeful you will see improvement. And I'm on a not-so-slow BURN about the problem of access with Tykerb. I also have a huge co-pay, and am preparing letters to go to my insurance, senator and congressman. That our insurances cover Herceptin which is just as expensive as Tykerb, but don't cover Tykerb simply because it's an oral chemo is outrageous. But I've griped enough about that in a previous post.

Secondly, you are doing a LOT of stuff and it's no wonder you're overwhelmed. I know you want to be there for family and community, but maybe you could slow down a little? Take a breather and take some time for YOU.

I'm so sorry about Jasimine. It's just a bummer, and nothing helps ease the pain except knowing that she has the best possible family to ease her passage.

You are in my thoughts and prayers,
<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 05-18-2007, 09:27 AM   #3
hutchibk
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Hey girls, how can we organize this into a big cohesive push about insurance and Tykerb?? I know that GSK must also be pushing politically for it to be covered, with as much as they are having to provide for free!
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 05-18-2007, 01:30 PM   #4
Odette
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My Copay is a 100%!

Joy, Brenda and all of you brave Warriors,

Lolly's plan to write to her congressman and senator is great! And to the Insurance companies.
Maybe we could get a campaign going to have letters arrive from 50 states (dream big) to the New York Times and other national papers, TV news channels etc. on the same day!
We could get Elizabeth Edwards involved her cancer is HER2 neg but that should not be a problem. (My daughter knows her daughter).

We should get it nicely planned! Imagine all of the other women who have the same problem as we do and are not even in our HER2 support group.
That was me a month or so ago.

Luckily(?) our income is so low at the moment that I was approved for both Tykerb and Xeloda to get it free, but if I had to rely on my insurance I would have absolutely no help.

Best wishes to you all!

Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment

'One does not get to choose one's adventures'

I'm experimenting with my diet, using green tea, flax seed curry and olive oil

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Old 05-18-2007, 01:36 PM   #5
chrisy
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Joy,

Wow. No wonder you feel overwhelmed - I felt that way just READING about your overscheduled, WonderWoman weekend. I agree, see if you can back off a little (after the pirate treasure hunt that is!) and focus on you. I know that's easy to say and hard to do. But you really have to remember to breathe!
I say again.....BREATHE.

I know you're sick of it, but your life is worth it. Maybe the garage sales aren't worth it, but you are. For the pirate language, that should be easy - just use all your nasty cancer fighting words - ARGGH, you filthy stupid scum

I have a feeling the Tykerb will work - Herceptin worked well for you for a long time, and once you get started you do have some time to figure out the $$$. I have a feeling this will work out too.

You decide when to start the Tykerb, but I also have had minimal side effects, although I am not taking Xeloda so that's a harder combination.

Breathe, my dear.

Much love
Chris
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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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Old 06-01-2007, 06:13 PM   #6
vickie h
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Exclamation Insurance comissioner complaint

Joy, File a complaint with the Insurance Commissioner. They have got to pay for Tykerb because it is FDA approved and you need it to save your life. I was told by an attorney that you have a good case against your insurance co. and that they are acting in bad faith. Let me know how it goes. Much love to you, Vickie
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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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Old 06-02-2007, 11:30 AM   #7
hutchibk
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The problem as I learned last month is that it is classified for coverage under prescription benefits of your insurance because it is oral. (not like infused drugs which are covered under medical benefits). Sadly, many of us have a cap on our prescription benefits (mine is $1500 per year) so it knocks us into the 'black hole' of coverage. If we were on Medicare, it would cost us $5 co-pay. Because we have insurance, but caps on it, we are forced to go out of pocket or look for assistance. It should be covered under medical, that is all there is to it. I don't know how these decisions get made between drug companies and insurance companies, but I would like to kick someone in the shins until they see what the problem is...
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-02-2007, 11:57 AM   #8
vickie h
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medicare and disability

I don't know how old Joy is but I was disabled from my cancer at 55 and have been on medicare ecer since. Apparently you can go on medicare whenever it is deemed that you arre permanently disabled. You don't have to wait until your sixties or even fifties to get it. I know of someone at 35 who is on Medicare. Love, Vickie
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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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Old 06-04-2007, 04:26 PM   #9
Mary Anne in TX
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Posts: 2,357
You're a doll, Joy!

I'll bet after just writing all that down you've had a good laugh. Get it out!
It's too sad about your dog. Lots of lovin to that faithful pal.

Joy, I don't know how all the right things are going to come together for your good health, but I'm sending positive thoughts and beliefs your way that it is in the air and in your heart!

You're such a get over it kinda girl! I'll bet you've got all the "stuff" organized and mostly done. I do so know how it is to worry about who will take care of my kids. But I just keep telling myself that if God gave me the assignment (my granddaughter), He'll find a way! So I'm just believing in Him and whatever plan of action he has!

Much love and laughter to you Miss Wonderful!
ma
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 06-04-2007, 09:02 PM   #10
jones7676
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Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
Smile xeloda/tykerb

I also had one heck of a fight to get this drug combo. They pulled me off Navelbine/Herceptin because they felt the scans showed that it was not totally effective. Seemed to work on the lung met, but not my bone met. While I was waiting I developed another brain met, which I recently had treated.
It took me 2 1/2 months to get the drugs and a lot of work on the part of a nurse and myself. I have perscription coverage but it only pays up to $500 per month per scrip, so they said I didn't qualify for any of the "indigent" programs. I am on my third round of Xeloda and my second of Tykerb. The Xeloda I finally got is office samples - I never did qualify for any help programs - another program picks up the balance of my Tykerb. The Tykerb Cares program criteria is terrible as far as I am concerned.

I have had very few side effects to the combo except that the Tykerb makes me kind of tired. I am thinking of switching it to at night to alleviate that. I have had a few loose stools but nothing serious.

I have also been through a whole slew of treatments which have not been as effective as I had hoped.

I also feel like giving up sometimes.....WE CAN NOT!

Hang in there! I love your energy and spirit.
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