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Old 05-17-2007, 04:07 PM   #1
Joy
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drugs should arrive tomorrow

well $2,876.23 later I have the drugs coming to my house tomorrow. I was awarded $7500 from the Patient Access Network Foundation for which I'm very grateful. But a little math and you find this is only good for 3ish months. So I have a little time to strategize. I have a lists of things to do. I am writing a complaint to the insurance company and the Colorado Division of Insurance. I will talk to a medical director after the 23rd about the options and I will also have a letter ready for the GSK rep that comes to the onc office. I will also apply to Healthwell for more assistance. Unless of course the drugs don't work and none of this is worth it.

I'm feeling so overwhelmed right now. Finances are a mess, my other dog Jasmine was diagnosed with cancer today (we lost her companion to melanoma 11/2 years ago). She is about 13 and I know it is to be expected-still really sucks. My last minute CT showed progression in the liver in less than a month, my daughter's big birthday party is tomorrow night at her dad's house and we are trying to organize a treasure hunt (I have to type of 8 treasure maps in "Pirate"...aaargh), I teach my parent/child class on Saturday morning while a huge school benefit garage sale will be happening at my house. I'm filled to the gills with furniture, baby things, tools-REALLY scary tee shirts with semi-trucks and eagles on them and other typical garage sale items. All of which I have to price between today and tomorrow. And I wonder if I should even take the drugs before my class and the garage sale or just wait until Saturday night?-kinda sounds like conversations I used to have in college only the drugs were different.

I'm overwhelmed and worried AGAIN that this treatment will not work and it is the end of the line and I'm freakin' TIRED of it. I'm so sad about my dog.
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-17-2007, 04:47 PM   #2
Esther
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Joy, good news that you will be getting your meds. 3 months will be sufficient to be able to tell if it is working for you or not.

It sounds as if you have alot of things going on right now! Maybe too much. Just half of those things would be enough to make anyone feel tired. In addition to that you have also just expended all that emotional energy getting your Tykerb issues resolved.

I would wait until Sat night before starting your meds. You may not have any side effects, but you never know, and you do have alot to get through in the next few days.

Good luck with it all, and may Tykerb kill all those cancer cells for you!
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Old 05-17-2007, 05:04 PM   #3
cassie
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Red face drugs

Joy
I get tired just reading all the things that you have to do!!! How do you have the energy? I'm so glad you finally got the meds,but the PRICE, that's scary.
I sure hope that you find more financial help. This is really a shame that your energy has to go to worrying about money when other more important things (like keeping a positive attitude) are needed. I know this is going to work out as is the meds. It's going to WORK!

So sorry to hear about your dog. They are so much a part of the family. At 13 years he/she has had a long and happy life knowing what a great master(mistress) it has!

Lots of hugs and prayers going your way. cassie
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Old 05-17-2007, 06:49 PM   #4
lilyecuadorian
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I'm enyoing so much the way how you write I can't do it even in spanish ....(my first language) and your treatment is going to work I got a lot of good feeling about that , is going to work ....just wait ....you will see
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Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 05-17-2007, 07:53 PM   #5
Carolyns
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Joy,

You remain in my thoughts and prayers. You have been through and continue to go through so much.

Love, Hope and Peace,

Carolyn
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Old 05-18-2007, 05:23 AM   #6
Odette
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Vote yes, take it today

Joy,

I have never been able to do as many things as you are doing even before cancer! Most of the time you probably enjoy being so capable, but now together with fighting for your Tykerb it is too much!

You will get through these days but then you must expand all your energy just on yourself to get well. To kick the butt of those nasty liver mets!

In this line of thought I would take the Tykerb as soon as it arrives (only 1 hour after and 1 hour before a meal) also no grapefruit juice.
You are the most important this time!

I just startet Tykerb 5 days ago, I do not have any debilitating side effects, I trust you will not either!
Should you have some side effects, you might just say to the people around you: I have to lay down a little, I started a new chemo. They will understand.

Happy Birthday to your daughter Joy, enjoy it is your special time too!

Odette
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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, 05:45 AM   #7
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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-- ------------------------
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   #8
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   #9
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   #10
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   #11
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   #12
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 06-05-2007, 12:09 AM   #13
SoCalGal
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Marshmellow side effect TYkerb/Xeloda

Hi Joy,

Are you feeling better? It's so easy to get discouraged. I fight feeling overwhelmed almost everyday - but I think it just goes with the territory.

So much is required of us to survive, and thrive - it's more than one can bear at times. I am divorced after 20 years of marriage - he has no contact with me or my kids so that is another hardship as well. Life is really diffficult and not the smooth road I imagined as a younger woman. But it's also filled with wonder and miracles, and opportunity and fun so there you have it!

Your message is a few days old so I am hoping that you are feeling better. The symptoms will lesson as time passes. My side effects were tough the first few weeks but easier now. I am on a special diet and supplement regime and maybe that's part of why my tummy settled down. I don't eat dairy or gluetin and am not supposed to eat sugar but I eat marshmellows and don't care.

If food gave you cancer, the whole fat world would be dead. That's what I tell myself when I eat marshmellows. Just for the record, I never ate them before starting Tykerb and xeloda.

Hope you have an easy day tomorrow. Wish I had a quote with which to end..."I eat marshmellows"~Flori
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