Re: Treatment after Kadcyla?
 

Jules

My wife's daughter is visiting from Texas with the grandkids. Ill have to wait until Wednesday to call Genentech. The point is, the dose of Herceptin in Kadcyla is sufficient to
inhibit Her2 Neu protein even though it is lower (3.6mg/kg every 21 days rather than 6mg/kg every 21 days. Ill find out why but its purely an intellectual exercise. Perhaps the chemo attached to the Herceptin in the Kadcyla molecule makes the drug bind more tightly to the Her2neu protein receptor. Im intellectually curious but its not clinically importantapparently. Whoever told you the Herceptin (Trastuzumab) in the Kadcyla molecule is just a carrier for the chemo seems to be incorrect. I printed a long article about Kadcyla and it states again and again that the Herceptin part is active

Paul

Re: Treatment after Kadcyla?
 

Hi Paul
Interesting! It was my Oncologist that told me it was only a carrier.

Thanks for doing this Paul!

Juls

Re: Treatment after Kadcyla?
 

Jules

I contacted Genentech and it seems my reasoning was basically correct. The Emtansine attached to the Trastuzumab molecule causes the complex to bind tightly yo the receptor allowing a lower Trastuzumab (Herceptin) dose to have a definite anti-Her2Neu effect

The Herceptin (Traztuzumab) in Kadcyla is active anti Her2Neu drug not a carrier molecule. Maybe you can bring this up with your oncologist. He or she can call Genentech from the UK

Paul

Re: Treatment after Kadcyla?
 

Hi Paul,

Will do!
I wonder if she was just brushing me off or didn't really know!

Thanks again.
Juls

Re: Treatment after Kadcyla?
 

Juls

It is hard to say. I dont know the politics of health care in Scotland. If she is brushing you off that is wrong and immoral. Im sure it is obvious to them you are non-confrontational.
Obviously it is wrong and dangerous to make statements about complex medications that you havent researched thoroghly.

You are a private person, very "nice" (for lack of a better word) but I would guess
you are very complex and you keep a lot inside without expressing it. Is there a friend or family member who can do the confronting for you? If so, contact that person.

Re: Treatment after Kadcyla?
 

Hi Paul,

Not sure if any of us know Health Care Policy here! It's only when flung into it that you become aware of the rules and regulations. I certainly didn't realise how many drugs not allowed here.

I did have my Husband with me at last 2 appts. He was not happy with last consultation in particular. He felt that we got her "on the back foot" as she did not realise I was well informed!

Juls


PS - Yes - I am a bit of a closed book!!

Re: Treatment after Kadcyla?
 

Juls

About 38 years ago when I was in the Public Health Service I was stationed in Phoenix Arizona. I was so glad to get a transfer from the isolated Indian Reservation.

Anyway I had a girlfriend from England, Marilyn. She was sweet, introverted, very sensitive and very very artistic. I guess what attracted me to her was her sensitivity because the overly intellectual person will bond to his opposite.

I dont want to get into England vs Scotland "problems" but my guess is that this personality is common in the United Kingdom. Just a guess

Re: Treatment after Kadcyla?
 

Hi Paul

Reserved is a good word!

Juls

Re: Treatment after Kadcyla?
 

Hi All,

On another note :-

After nearly 6 weeks wait for "an appt in a few days" - just received letter for MRI appt in 2 weeks time!

Re: Treatment after Kadcyla?
 

Juls-are you looking into any clinical trials? Flori

Re: Treatment after Kadcyla?
 

Hi Flori,

Good to hear from you.

Haven't looked into any trials recently. Haven't been offered any either!

Have you been taken off all treatment at the moment?

I'm on Aromasin & Zometa (12 wkly) only with nothing for Her2. It's the first time in over 5 years that I haven't had Herceptin.

I will have a look at the trials you mention in your other post.

Take care

Juls

Re: Treatment after Kadcyla?
 

Just been told that MRI reports taking 4-6 weeks minimum at the moment. So not only have I waited 7 weeks for appt etc. I have now to wait another 2 weeks after MRI for Doctor appt & might not get any info!

So much for urgent!

Re: Treatment after Kadcyla?
 

Hi Juls—glad you’re on something!! Consensus in the mets community is staying in herceptin even after progression offers benefit. Hope your onc will add it back in. Nothing to loose!!

I am off all treatment - I was trying to stay washed out so I. Hold jump on a trial. If I’d known it took so long I would have done something but now it’s close to trial time I HOPE!!
Sending hugs...❤️
Flori

Re: Treatment after Kadcyla?
 

Hi SoCalGal,

What trial are you going on? I've been approved for the HER2CLIMB, waiting to hear if I get approved for DS-8201a in Human Epidermal Growth Factor Receptor 2 (HER2)-Positive Breast Cancer. So hard to decide. I know you don't lose your hair on the HER2Climb and side effects are doable. I haven't got a straight answer about hair loss with NCT03248492 and I think effects may be worse. I haven't been on any treatment for 8 weeks now. I haven't been able to find anyone on NCT03248492 to ask. Always a roller coaster ride

Re: Treatment after Kadcyla?
 

Hi Flori.

Yes- thought it would still be prescribed and give me some benefit. When I asked a few weeks ago was told "No" as I had failed it!


Similar to you, Doctor wasn't giving me another drug until ablation procedure. Just wasn't expecting 7+ week delay. Like you would have done something sooner.
In hindsight should have insisted on staying with Kadcyla until ablation due.

Fingers crossed for trial.

Juls

Re: Treatment after Kadcyla?
 

Hi Valleygirl,

Both these trials sound interesting. Can't find much info about NCTO3248492 trial either.

Juls

Re: Treatment after Kadcyla?
 

Juls, hope you convince your doc to add back in herceptin. It's your life. There is support material, you can spend some time googling if you need. I wish I could find my file, if I do, I'll post.

Valley girl - UCLA has DS8201a open slots. Dr said no hair loss in her patient who is on it - side effects not too bad, early results very good. DS8201a (NCT03248492)

Other promising trials are ZW25 - which is at USC. ZW25 (NCT02892123)
I haven't met with them yet to know anything other than the slots open are single agent targeted.

If you can get tucatinib with xeloda and herceptin arm, that is also having VERY GOOD results and will be approved soon I believe. I have a friend doing very well on her2climb, no hair loss, she's on herceptin/xeloda/and presumably Tucatinib, sine it's been a year and she's stable and doing well. No one knows for sure, since it's double blind. Also--Tucatinib is small molecule, so good for crossing BBB.

SoCalGal

Re: Treatment after Kadcyla?
 

Hi Flori,

I'll ask again for Herceptin.
Good luck tomorrow re trials info.

Juls


Just received Ct appt for 1 week after MRI. Both are for abdomen scans. Seriously?

Re: Treatment after Kadcyla?
 

Hi All,

Just an update!!

Saw Consultant Radiologist re ablation this week. (Originally referred to him 5 years ago & then again 3 months ago.) To be honest wasn't sure he actually existed.

I am suitable for liver ablation & down as high priority! So should be done in next 4-5 weeks. Downside is that area concerned is on surface of liver & guess where nerves are on liver - so more discomfort/pain for me!
So far Aromasin working. Just as well because they still refuse to give me Herceptin with it.


Juls

Re: Treatment after Kadcyla?
 

Glad you are a high priority for the procedure ... hope they can have good pain meds available for your recovery.


Carol Ann