PDA

View Full Version : Still riding my unicorn


fullofbeans
02-08-2013, 12:05 PM
Hi Everyone,

I had a scan yesterday and just received a call from the clinical trial oncolongist. I had a 22% reduction of the tumours.

Truth is I was not surprised as I was feeling much better around new year and I felt a massive difference in my energy level.

So I am releived although since last week I have been feeling something in my airways again (I had tumours growing there, and removed before clinical trial started) so I am still a bit worried as to whether the trial is still helping now. But I will try to forget about this throat/airways for now and celebrate.

I think it may well be another potential arm to add to our her2 ammunition, hope I will be riding this unicorn for a very very long time

kk1
02-08-2013, 12:18 PM
RIDE SISTER RIDE!!!!!!!!

wonderful news, you are always in my thoughts and prayers

NEDenise
02-08-2013, 12:32 PM
FOB
Never having been a big unicorn fan...I nearly missed your post. Boy would that have been a mistake! Never judge a post by its title! ;)

Wow! Yay you! YOU GO GIRL!! I couldn't be happier for you!!
Honey, if a unicorn can do all that...I am a convert. UNICORNS ROCK!!!
Keep up that magical healing journey!
much love,
Denise

ammebarb
02-08-2013, 01:21 PM
That is absolutely great news! Hope you do get to celebrate. Horray for unicorns!

Barb A.

StephN
02-08-2013, 04:59 PM
Super news! Great reduction.

Can you tell us a little more about the trial? Is it only in Europe for now?

Good sleuthing you did to find it!

Laurel
02-08-2013, 07:17 PM
Man, Beans, we needed some good news around here! Thank you and may you ride that pony forever!

Bunty
02-08-2013, 08:19 PM
Fantastic news FOB! Tumour reduction, energy increase, improved breathing - keep it going!
Best wishes, Marie

caya
02-08-2013, 11:14 PM
Thanks for sharing your great news FOB!!
Keep on riding that unicorn, hoping for more reduction!

all the best
caya

rhondalea
02-09-2013, 04:25 AM
Great news! And what a relief to hear.

How's your puppy doing? Will you have a new video for us soon?

JennyB
02-09-2013, 05:26 AM
Fantastic news am over the moon on the unicorn!

Big hugs x

KsGal
02-09-2013, 07:33 AM
If you have time, I'd like to know a bit more about your trial as well. Im not familiar with that one or I have forgotten (more likely I have forgotten). Having said that...GREAT NEWS! Happy dance, happy dance! Lots of prayers that the good news just continues... :)

Mtngrl
02-09-2013, 04:04 PM
FOB--

Unicorns rock.

I'm so happy you got such a great response. I will pray for continued improvement for you.

It's so great to hear this wonderful news.

KDR
02-09-2013, 04:23 PM
FOB,
So great to hear your news and hope this regimen continues to be The One for you! i love hearing news like this! http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=114&abstractID=93825
This is an oral med, right, as per the above--which is a welcome change...I only had time for cursory read, do you still have to have Herceptin infusions?
Keep going,
Love
Karen

ElaineM
02-09-2013, 06:36 PM
Thanks for sharing your good news.
I am glad you have been feeling a little better.
Keep riding !!

Ceesun
02-09-2013, 08:46 PM
Bravo!!!!!!!!!! Ceesun

Jackie07
02-09-2013, 09:35 PM
Great news!

Keep on riding that beautifl unicorn!

fullofbeans
02-10-2013, 04:41 PM
Hello beautiful ladies,

Yes the trial are tablets like tykeb and it targets same epitope as tykerb but block them in a different ways, apparently 6 times stronger.

I so wish I could have it with herceptin (and a pi3k inhibitor) as I can imagine it would work even better..but I am a lab rat..

its in phase 1b at the moment only in UK (london) and Japan (where the company is from) I think they wanted a foothold in Europe wich is why they opened a trial centre here. I was the last breast cancer allowed to be enrolled in that phase 1 as they are also trialling it on other her2 or egfr positive cancer such as oesophagal cancer(some have very limited other treatment). Another lady with BC got a 29% reduction news last week at the trial centre.

Side effect are a bit more than tykerb i would say and I had a couple of rough weeks, but nothing compared to chemo. I have to say my skin went quite dry (I naturally have a good soft skin). That said the side effect have subsided in the past week.

I have also to say that I am worried as I can feel something in my throat again and I do not feel as energetic as I did few weeks ago: tight back & breathing less well.. so i am worried that things are growing again. I am thinking that they had reduced more before but are now growing again. So i find it hard to be celebrating fully but I will keep you posted, the next few weeks should let me know if things are kept at bay and hopefully I will feel as I did in January shortly again, I hope I hope go unicorn, go

NEDenise
02-10-2013, 04:50 PM
FOB
I'm still praying for more and more good things for you!
Sending a big hug across the world.
Denise

Ellie F
02-11-2013, 01:15 PM
FOB
Brilliant news and a huge reduction. I pray that whatever it is in your throat is NOT cancer and this new drug keeps you stable for a long, long time.
Ellie

StephN
02-11-2013, 01:43 PM
Great numbers on reduction fro the other lady you mentioned!

I am wondering if that breathing problem could have to do with your stent? Is it possible the stent is not doing the same job?

Tomorrow I am on the schedule for my 4th angoiplasty. My vascular surgeon is hesitant to put a stent in, as he does get a good opening with the balloon procedure, but it needs to be repeated every 18 months or so as the clot reforms. It is an easy procedure, so I just keep going with it.

The surgeon says that restenting is a much bigger deal with more risks.

Are you taking any kind of blood thinner? I take a 325mg aspirin every night.
Thinking only the most positive good thoughts for those little pills to keep on with the tumor shrinkage.

'lizbeth
02-11-2013, 06:59 PM
FOB,

So great to hear of your 22% reduction. Ugh, this cancer stuff can be so stressful. I hope that your airway stays nice and clear and whatever you feel turns out to be non malignant and easily remedied.