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
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
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.
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.
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