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

Re: Treatment after Kadcyla?
 

A step forward.

At long last!

Got telephone call from Doctor's Secretary yesterday. Doc wants to do ablation on 3rd Oct

Guess where I'm spending my "big" birthday!
Geez!
Juls

Re: Treatment after Kadcyla?
 

Progress, YAY!!


Carol Ann

Re: Treatment after Kadcyla?
 

Well, even having the ablation on your birthday is still a great thing! What a battle you have had. I am honestly in awe of your toughness! You may be reserved, but I think you may have a bit of the "iron fist in the velvet glove" in you! Good luck with the procedure and I hope the pain will be minimal even though on the liver surface.

Re: Treatment after Kadcyla?
 

Carol Ann -

Thanks! Slow progress but good!

Laurel -

Thanks for your kind words. I first asked for this procedure over 5 years ago. Been a long time coming!

Juls

Re: Treatment after Kadcyla?
 

Ablation done yesterday.
So far so good!

Juls

Re: Treatment after Kadcyla?
 

And Happy Birthday to you too

Re: Treatment after Kadcyla?
 

YAY!! And Happy Birthday!


Carol Ann

Re: Treatment after Kadcyla?
 

Juls,
Happy Birthday!
Sending healthy vibes your way!
hugs,
Melissa

Re: Treatment after Kadcyla?
 

Thanks Becky, Carol Ann & Melissa,


Feel like I've been run over by a truck today!!


Juls

Re: Treatment after Kadcyla?
 

best wishes for everything!! nancy

Re: Treatment after Kadcyla?
 

Sending hugs and strength your way (and belated Happy Birthday!)

Re: Treatment after Kadcyla?
 

Thanks Nancy & Donna.


At hospital yesterday & all good after ablation.
My Bilirubin level has been an issue for months but in 1 week bilirubin level has gone down from 47 to 22.
Don't need to go back for 12 weeks!! Yeah!!

I asked again for Herceptin to be reinstated but told "no", to stay on aromasin with zometa. Going to continue stating I think I should still be on Herceptin.


Otherwise taking this as a win!

Juls

Re: Treatment after Kadcyla?
 

Hi Juls,
How have things been since the ablation? Any luck getting back on Herceptin?

Re: Treatment after Kadcyla?
 

How are you Juls?

Re: Treatment after Kadcyla?
 

Hi Unclaimed,

Thanks for asking. Haven't been on here for a while.
Going for Ct this week to check Ablation area etc. Had little pain from it but have had a bit of cramping.

Oncologist still saying Herceptin failed me. So on Aromasin and Zometa only.

How are you?

Juls

Re: Treatment after Kadcyla?
 

Hi Flori,


I've been better!!

Haven't been on site for a while.
Sciatica flared up just when ablation done. Got so bad I ended up at Emergency Dept. Still in discomfort and walking badly.

Due for CT's this week and a bit concerned. ( Really not happy being on Aromasin and Zometa only)





How are things with you? Glad that ZW25 keeping you stable.

Re: Treatment after Kadcyla?
 

Juls,
Sorry that you are not feeling well. Sciatic pain is horrible, I hope that you get pain managed and answers soon. Any chance of you joining a clinical trial?! Sending hugs and so much love <3

Re: Treatment after Kadcyla?
 

Hi All,

Just out of hospital. Turned out sciatic pain is either cancer cell or new bone met in pelvis near groin. In exact position that I've felt nerve on and off over Summer. Got worse 31st Oct. & went to GP, A& E, A & E Consultant & Onco over last 10 wks.. Been going ever since! Everyone checked the numerous ct's,mri & x rays done between April/May until mid Oct. Nothing seen! Textbook sciatica! Finally my Onc Nurse (along with new private) Physio got suspicious - but they wouldn't give me scan until 10th Jan.
Well all went pear shaped - scan showed bone involvement, liver involvement and enlarged lymph nodes at leg area. Immediately 5 fractions of rad over weekend. Been treated to prevent paralysis. ( That's a joke because everything they did made spine worse!)
Got home yesterday but foot weak so have foot strap, zimmer and walking stick. Physio to come to house!
Saw Oncologist yeterday and told her speak to me when a plan properly formed.
Looking at new trial with herceptin again but Bilirubin could be issue & I would end up missing to many cycles.


She is going to write and ask permission of Scottish Med Board to give me Herceptin regardless but thinks unlikely they will approve.

Asked for analysis report from previous trial - in hope there is something that might be helpful ( she knows nothing about it so has to contact Senior Trial Doc - so going to take time & then its a German Company that deals with it.


other option Chemo / hormonal.


Family not happy about wait but can't be helped.

Any thoughts appreciated!


Just remembered Docs other comment " Don't think you and CT's a good fit!" Might have to send you for MRI's in future!

The plus point was liver ablation vg ( but other problems appeared still to be confirmed)

Juls


Laurel - think that iron fist is well out the glove now!!

Re: Treatment after Kadcyla?
 

Oh Juls, so sorry about all of this. Hoping your doc comes up with a viable plan SOON and you aren't in too much pain. Glad you'll be getting physio. I don't have any thoughts about how to go forward but wanted to let you know I am here rooting for you.


Carol Ann

Re: Treatment after Kadcyla?
 

Juls;

I'm sorry but I don't know your pathology. Are you ER/PR+? If so do ask about Ibrance/Letrozole combination. I have posted on it here and it is used for her2- and Her2+ Given in pill form it is very easy to take. I am hoping this will be of help to you.

Cathy