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Search took 0.01 seconds. Search: Posts Made By: Juls
Forum: her2group 01-23-2018, 07:02 AM
Replies: 129
Views: 58,263
Posted By Juls
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...
Forum: her2group 01-12-2018, 06:33 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi Tracy
Will try that.
Sounds better!
Juls
Forum: her2group 01-12-2018, 06:01 AM
Replies: 129
Views: 58,263
Posted By Juls
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...
Forum: her2group 01-10-2018, 05:49 PM
Replies: 129
Views: 58,263
Posted By Juls
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...
Forum: her2group 01-03-2018, 03:56 PM
Replies: 129
Views: 58,263
Posted By Juls
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." ...
Forum: her2group 10-22-2017, 11:44 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi Laurel
Yes- hope it comes down! Will really be annoyed if it doesn't!
Doctor now wondering if I have naturally higher bilirubin!

Have upped intake of red fruit/veg, water and coffee!...
Forum: her2group 10-20-2017, 05:22 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi Valleygirl
How are you finding TDM-1 and Keytruda?
It seems similar to trial I'm on - TDM-1 & Tecentriq (Targets PDL-1) or placebo

Juls
Forum: her2group 10-20-2017, 05:15 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Well - this trial is up and down!
I'm off treatment again as bilirubin up. Only plus this time is that if bilirubin under 30 next week I should get treatment.
So far I haven't been to bad but...
Forum: her2group 10-10-2017, 11:09 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Good to know.
I had H & P on a trial for 20 months. Found it ok to do - but I was the only one not to have the itch! Most of the ladies said once off perjeta - itch stopped!

Juls
Forum: her2group 10-05-2017, 04:46 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Thanks Traci
So far - so good!!

How is H & P going?
Forum: her2group 10-01-2017, 10:21 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Another long day at hospital.

Only half of blood test came back in morning - the important result (bilirubin) held up in bio-chemistry lab as machinery broke down! 6 hours later told that I could...
Forum: her2group 09-13-2017, 04:01 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi Paul

Thanks for reply.
You are probably right about oncologist being cautious.

Just read info on immune related hepatitis so would prefer not to go there! I have a 1 in 3 chance of being...
Forum: her2group 09-12-2017, 11:46 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi All

Have been on this trial with Kadcyla & Tecentriq/or placebo for 6 months.
Liver met reduced to under 7 mm on CT 4 weeks ago.(It was 3.5 cm at start of trial)
Side effects change every...
Forum: her2group 03-03-2017, 07:15 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Yesterday I started new immunotherapy drug trial.
Also got CT report -
Brain - OK!
Liver - lesion grown 1.2 cm in a few weeks! A bit concerned about that.
Fortunately only change is in liver...
Forum: her2group 02-21-2017, 01:39 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Had Ct and Echo today.
Heart fine!
CT - got to wait for report. Normally CT scan is of chest,abdomen and pelvis. Today it also included head. Never had that before & wish I had been told in...
Forum: her2group 02-20-2017, 04:06 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi Andi
Thanks for your reply.

As you know I was not happy with decision (re Xeloda & Zometa) last year when bone met found & told Onc so. I felt the decision was made without me being...
Forum: her2group 02-18-2017, 04:49 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Thanks Amy
I am still waiting! Doesn't look like I will be starting next Thursday!
Juls
Forum: her2group 02-13-2017, 09:18 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Thanks Tiffany.
Oncologist not overly concerned re growth but I don't know him well so don't know his work style.
My previous Oncologist seemed to go looking for issues even when reports said...
Forum: her2group 02-13-2017, 08:01 AM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi
Bone scan done on Friday.
Have been told I will probably need another CT - amongst other tests.
Off all treatment for 4 to 5 weeks - For some reason Onc not overly concerned about this! He...
Forum: her2group 02-09-2017, 05:29 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Thanks Tiffany
It seemed to go well today. All my questions answered directly and with no hesitation. As I expected - no real alternative offered. Once I've got my head round all this I'll...
Forum: her2group 02-08-2017, 05:04 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Thanks Amy
I'll update when I have more info re this new treatment & trial. Got appt tomorrow with Oncologist & bone scan on Friday.
Juls
Forum: her2group 02-08-2017, 12:17 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi Tiffany
Thanks for reply!

Perjeta is a trial drug only at the moment in my area. I was lucky to get on trial of it 4 years ago.
Herceptin is standard so available to all.
Kadcyla is also...
Forum: her2group 02-06-2017, 03:12 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Hi Tiffany

Thanks for reply.

I have already been on a trial with Perjeta & had progression after approx 2 years on it. To be accurate I had nearly 3 years on Perjeta but that was because 2...
Forum: her2group 02-04-2017, 08:11 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Thanks Amy- I'll have a look at both.
Have read a little about Tucatanib
Just been on Onco link re this new trial drug I have been offered! Has many side effects!
3 am & I'm still up...
Forum: her2group 02-04-2017, 06:52 PM
Replies: 129
Views: 58,263
Posted By Juls
Re: Need input!

Thanks Amy.

I am wavering a little tonight!
Wonder if I am focusing on Kadcyla & not investigating other drugs etc. Not that I have been offered anything other than another AI if I don't get on...
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