Survey: Need help

[eric]

Hi all. Unfortunately Caryn had short success on Taxotere/herceptin and I'm in need of reasons to remain optomistic. I know there's a lot of good stuff out there but I can't bear the thought of losing her so my fears are winning out right now. Has anyone had long-term success with a chemo without the help of herceptin and tykerb after going through a bunch of chemo's? Herceptin and Tykerb haven't seemed to help her.

Thanks in advance.

Eric

[Sheila]

Eric
Has she tried Avastin? It combined with Herceptin or Tykerb seems successful....I even have Taxol added, but I was thinking maybe Abraxane for your wife. Also what about the new trial drug Swanky is on....you can find it under her posts. My prayers are with you both....this disease is so relentless! Dont give up!

[PinkGirl]

Hi Eric
I don't have any answers to your questions. I am
bumping this up so some of the wise women warriors
who have been through the trenches can offer some
advice. I know there are other treatments out there
for you and your wife to try. Good luck and keep the
faith.......

[Mary Anne in TX]

Eric, Sheila is right, there are more combinations and drugs to try. What did 2nd opinion say? I'm believing they'll find just the right combo for Caryn! ma

[lilyecuadorian]

Eric how about this trastumuzumab-MCC-DM1 open label for met bc who progressed on herceptin therapy and there is More Information
Study ID Numbers: TDM4258g
Last Updated: September 24, 2007
Record first received: July 27, 2007
ClinicalTrials.gov Identifier: NCT00509769 (http://clinicaltrials.gov/show/NCT00509769)
Health Authority: United States: Food and Drug Administration
ClinicalTrials.gov processed this record on October 25, 2007

[Julie2]

Eric,

I can understand your situation. We become so helpless sometimes. Caryn can try xeloda, which can be used for long time,Navelbine is there. Since she has success on gemzar won't the onc try again? I am thinking about you and the family. Please don't loose courage. I think something will be a magic bullet.

Julie

[PinkGirl]

just bumping this up

[Lolly]

Eric, I'm back on Herceptin/Taxotere/Xeloda after 4 months of Tykerb/Abraxane which was briefly effective but then I had progression. The HTX combo is slowly shrinking the tumors in my axilla and chest wall.

Has your onc considered a triplet? Even though I had Taxol before, and also Xeloda, and experienced progression eventually, the triplet seems to be making a difference.

<3 Lolly

[StephN]

Eric -
I am so sorry to hear that Caryn is once again in the market for new drugs.

I know a woman in a trial here for a new drug - a big bag of pretty purple stuff called KOS-953. (Still a letter/number name.) She was heavily pretreated and has shown improvement. It is a weekly infusion and she comes from Montana.

Here is a link, and I am sure you can Google this drug and find out more.

http://www.fhcrc.org/patient/treatment/trials/details.phtml?searchTerms=6530&searchFields=ProtID&searchKind=clinical

[eric]

Thank you all for your responses. Caryn spoke to the doc and his plan is to wait for her scans over the next 2 weeks. If the spot in her liver grew then he may consider RFA, freezing, injecting or heat. If it shrunk he may continue this chemo for one more time.
I'll try and respond to each of you...

Sheila: avastin is definitely an option although I'm a bit skepticle since I havent seen as dramatic results as with herceptin and tykerb

PinkGirl and MA: thank you

Lily: I am intrigued by the idea of trastumuzumab-MCC-DM1 but nervous since its still in phase 1. If her Onc suggested it I'd probably be both nervous and excited.

Julie: xeloda didnt work for her but navelbine and (I agree) gemzar should still be an option for her. How did you remember that she had success with that?????

Lolly: I like the idea of triples although my guess is her onc might be nervous about triple toxicity. Definitely something to discuss with him though.

Steph: interesting trial. Thank you. I'm thinking of you with the problem with your swelling. I hope Hickman can figure out how to rectify it for you. It sounds annoying and you've been through enough.

Thank you all, I don't know how well I could manage this crappy situation without all of you to lean on. Love to all...Eric

[jones7676]

There are so many options out there Eric - don't lose hope. New drugs are being developed every day. I am hoping they can find just the perfect combo for her so that she can reach NED. Hang in there!

[IRENE FROM TAMPA]

So sorry for Caryn having to go through this again but there are so many different combo's out there she can try. Of course, her onc will be the best to determine this and drugs she may have used in the past can now be used in combo with something Everyone is different and unique in how they will respond so unfortunately it becomes a trial and error.

I have been doing this now for 11 1/2 years straight on one type of chemo or another and each time I think, this is it, there is nothing left but then we find something different to combine. Thank goodness to research and new drugs arriving.

You are being smart in researching all of her possibilities which is the thing to do. I am sure she will find something that will keep her stable.

You both take care if you should have any questions that I might be able to help you with, pls do not hestitate to let me know. I am here for you both.

[hutchibk]

I can't offer any help beyond what all of the other junior oncologists here have offered. We should all get honorary degrees, right? I totally agree Eric... I don't know what we would do without this amazing group. I think my doc is slowly becoming clued in to the fact that he has about 50 junior/assistant doctors whom he has never met... don't know how he feels about it, but Her2Support is well represented in my appointments with him!

[Barbara H.]

Eric,
I am on the Herceptin MCC DM1 phase 1 trial and it is very easily tolerated. I can't think of an easier drug to handle other than Herceptin alone. The only complication I have had is that it raises liver enzymes in some people. As a result, I had to forgo treatment this past week. Nevertheless, in just four weeks this has been a miracle drug for me. I had constant pain in my hip and couldn't sleep. I am now pain free and work full time teaching third grade. I am being treated at the Dana Farber.
Good luck,
Barbara H.

[eric]

Thanks all.

Barbara, I've been watching your postings and can't tell you how happy I am for you and all of us that you are having such a positive experience. Let's hope others benefit as well.

[Vanessa]

I don't have anything else to offer but prayers and positive vibes. They are coming your way.

[vickie h]

Prayers to you and Caryn from California. There are so many combos still for her to try. I am entering year 4 without ever getting a break from chemo, but I am ok and I have learned that when I start to feel fearful, I become even more pro active, as you are doing. New drugs are entering the market with speed these days and there is much hope. Look toward the sun and know that all here love you and support you. Love, Vickie