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-   -   Herceptin/Tykerb clinical trial for early stage (https://her2support.org/vbulletin/showthread.php?t=43979)

gourim 02-27-2010 05:12 PM

Herceptin/Tykerb clinical trial for early stage
 
Hello...
Dxed on 11/04, joined the herceptin/tykerb clinical trial on 12/31, my lump has shrunk from 7cm*4cm to 1cm * 0.6cm.....just wanted to share the good news with all..:)

bejuce 02-27-2010 06:53 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Congratulations!!! That is great news!!!

vlcarr 02-27-2010 06:59 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Yeah, doing the happy dance! It's good to see a fellow trial member on the board but better to see you are getting GREAT results:)

So thrilled for you.

karen z 02-27-2010 10:53 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
very nice news!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

grammytotheboys 03-01-2010 08:39 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
That's terrific news! I am deciding whether or not to join that trial...I think I am going to do it!

gourim 03-02-2010 09:35 AM

Re: Herceptin/Tykerb clinical trial for early stage
 
Oh yes, especially if your oncologist thinks that ur tumor fits the bill for the trial ie. it has a high % of Her2+vity (mine was 100%) this trial will do wonders...:)..and the best part is the side effects or should I say lack of side effects...I only had to deal with a mild rash..Since I am premenopausal with a hormone positive tumor, I was given goserelin to shut down my ovaries and Letrozole to bring down my hormone levels further..that causes Hot flashes ..but these are the only 2 side effects I had.
Some womed have diarrehea..but I heard it is well managed with OTC drugs...:)

All the best!!!!

gourim 03-22-2010 03:37 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Hello everybody,

My clinical trial has ended, I cant feel the lump any more, but the MRI did measure something @ 1cm * 1cm. The report said that the area was minimally enhanced.

So, I am having a lumpectomy and axillary node removal tomorrow 03/23, will keep you updated with the pathology report specifics...

grammytotheboys 03-22-2010 03:55 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Good luck lady! My lumpectomy was Feb 9, tumor 1.7cm and recovery wasn't bad at all. I did get this weird swishing sound afterwards from fluid filling up quickly where the surgeon removed the tissue.( He doesn't use drains as he feels you get a better cosmetic result.) I'm thinking great thoughts for you!

vlcarr 03-22-2010 09:48 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Will be thinking about you tomorrow. Hope your surgery goes well and nothing is in your lymph nodes. Really happy you are able to get the lumpectomy.

gourim 04-01-2010 01:26 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Had a lumpectomy and axillary node removal on 03/23..

The path report came in yesterday..first the good news...no cancer in axillary lymph nodes any more..even the lymph node that tested positive in a previous biospy came back negative...0/8 lymph nodes clear.

No malignancy in the lymph fluids or the surrounding blood vessels

Clear margins, the tumor is all out.

The not so good news..a malignany with the greatest dimension being 0.7 cm identified.

However. low proliferation rate..only 1/10.

Though tumor is small and is node negative, since my node was positive before the clinical trial, I have been staged as IIa...

I will be meeting the oncologist and radiologist to dicuss the chemo and radiation..

Over all I am elated to have gone from 70mm to 7mm...:)

Three cheers for this new treatment for Her2+ve tumors..:)

schoolteacher 04-02-2010 02:37 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Glad to hear your good news.

Amelia

Jackie07 04-04-2010 03:34 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
That is so wounderful!

We love to hear about new treatments/clinical trials that're so successful. Be sure to keep us updated.

ps. Love your smile in the picture.

Emilie 05-30-2010 07:36 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Greetings,

I was recently diagnosed with a new primary HER 2 neu positive breast cancer, stage 1, no lymph node involvement. I just started the TCH chemo regimen but am wondering if anyone has heard of early stage patients receiving the Tykerb/Herceptin combo outside of the clinical trials?

Thanks so much in advance for any advice!

Jackie07 05-30-2010 10:18 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Emilie,

I doubt if there's any Tykerb/Herceptin combo available right now since it is still on the trial stage. However, we did have members who had reported getting Herceptin 'off label' way before the drug was approved by the FDA. Perhaps you can request for it through your physician/hospital. [correction: check out Shondagaylord's thread on 'Chemo and Tykerb & Herceptin ' just next to this thread. Seems several members have already had the combo.]

TCH is a good combo for stage I especially when there's no lymph node involvement. Since I've had a recurrence that was overlooked for 4 years, I'd like to caution you about the problems of mammogram - it's only accurate in 70% of the case.
Stay diligent even after you have completed your treatment.

Emilie 05-30-2010 10:27 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Thanks so much, I really appreciate it. I will follow your advice. I hope you're doing very well.

gourim 05-31-2010 07:38 AM

Re: Herceptin/Tykerb clinical trial for early stage
 
From my dicussions with my onco, what I gathered was that, for early stage cancer Tykerb was available only via trials...but that was 6 mnths ago and things in cancer treatment change rapidly ..so as Jackie mentioned might help asking ur onco....all the best!!

hutchibk 06-03-2010 06:40 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
I have been on the combo for 18 months and it is holding me pretty darned steady... I have loved this combo.

And I am not in a trial... it's an available combo (or at least not a disapproved combo) for mets patients.

Nancy L 06-03-2010 07:44 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Simply fabulous news for early stage patients. Good for you. I also am Stage IV on this combo for the past 15 months. So far, so good.

Ellie F 06-04-2010 07:53 AM

Re: Herceptin/Tykerb clinical trial for early stage
 
Brenda and Nancy
Really glad to hear that you both are dong well on this combo. This and T-DM1 seem like the way forward,less toxicity and good response.
As you know due to costs it's currently not an option here on the NHS so it's save up time in case the need arises. Thanks for sharing.
Ellie

vlcarr 06-04-2010 11:32 PM

Re: Herceptin/Tykerb clinical trial for early stage
 
Hopefully this type of trial will make Tykerb available to patients like me & Gouri who were newly diagnosed with no mets. It worked so wonderfully for me. Part of the trial was to get biopsies along the way. The first time mine was due they could not even find the tumor on ultrasound to get the biopsy and by the end of the 3 months my tumor was just melted away. They never did get that biopsy even though they tried one more time after the first one and there was just nothing there on that ultrasound either!


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