Re: Need input!
 

Just checking in!

Still on trial of Tecentriq (Atezolizumab).
The drug company has looked at 1st reports and have found that results show little difference. So trial has been "un-blinded."
Turns out I'm on Tecentriq with Kadcyla.
Other than problems with high bilirubin ( caused by Kadcyla) I am ok.
We can stay on trial or come off and have Kadcyla on its own. I've decided to stay on it for now. Will review again in March depending on next scans etc.
Trial had 7 on it. Now down to 3. To date I don't know if other 2 ladies staying on trial. Might just be me!

No idea if I'm making right decision!

Juls

Re: Need input!
 

Juls, that's the way of trials, you never really know if it's the right thing. However, your willingness to contribute to the body of evidence (good, bad or indifferent) is pretty heroic, in my opinion. Much love to you and fingers crossed that it IS right for more than the greater good---right for YOU.

Re: Need input!
 

Hi Tracy
Thanks for reply - especially tonight. All went pear shaped today. Looks like I'm off trial.
Bilirubin been high & I've not had treatment since 30th Nov. As per trial rules - number of days without treatment has put me out! Should still get Kadcyla when bilirubin reduces but under NHS rules.
Got to wait to next week for further info.

Can't decide whether I'm upset or angry!

The joys of a trial & treatment!!

Julie

Re: Need input!
 

Bummer, Juls. I can hear your frustration. Are you doing anything to support your liver so you can get back on Kadcyla post haste?

Beets, milk thistle, radishes and barley are things I have heard of using as liver support in pets. maybe they are useful in people too.

I'm sorry about this rough patch. You are doing great, keep moving forward.

XO Tracy

Re: Need input!
 

Hi Tracy

Have tried extra juices, B12, red fruit & veg etc. Also coffee - it apparently helps bring down bilirubin. Didn't help this time. Another suggestion was 1 tablespoon olive oil twice a day - haven't tried this yet!

Hope all good with you.

Juls

Re: Need input!
 

Olive Oil, YUM! Salt and a little red pepper ground over the top, dip bread and you're in Heaven and lowering bilirubin. A few tablespoons will not be enough. :)

I'm still flying under the radar <touch wood>.

Re: Need input!
 

Hi Tracy
Will try that.
Sounds better!
Juls

Re: Need input!
 

Believe it or not, I still take high quality evoo right off the spoon. 3 tablespoons a day and use for salad dressing etc

If buying tumeric buy it with piperdine which is the active in black pepper. This makes tumeric 2000% more bioavailable. Also take the tumeric with the fattest meal of the day or at least with your tablespoon of evoo:)

Re: Need input!
 

Hi Becky. Do you still take arimidex? I had to stop in November 2017 because of NHS funding....I live in the UK. I am asking because I am thinking of trying to start again if I can access it but Docs here tell me there is no evidence of any one in UK continuing beyond 10 yrs and no evidence of benefits for doing so..... I would gladly self fund if I could.
Also, could you let us know what supplements you take. You are my poster girl as you are one of the few on the board who has followed the UK protocol of herceptin after chemo!
very best wishes, Nancy

Re: Need input!
 

Well as I thought - off trial as time barred although still to get trial CT's etc.
Bilirubin even higher this week so once again no treatment.
Doctor telling me that it might be months before he can give me Kadcyla. Bilirubin has to come down below 30. Last week it rose to 48!
Anyone had this?
I am getting concerned that I've had no treatment except 1 x Zometa since 30th Nov.