michka any news yet?

[sarah]

Hello,
Wondering if you have any news yet.
You said you might know something on the 11th.
Hoping for good news
hugs and love
Sarah

[StephN]

Thanks, Sarah for the reminder.

I have also been hoping for some better news from our dear Michka.

Sending you positive energy and best wishes for a treatment to end all treatments!

[Pray]

I'm hoping to hear from you also sweat Michka!

[caya]

Moi aussi, chere Michka!!

all the best.
Meillieur a toi,

caya

[michka]

Thank you for thinking of me.
Last week I noticed that the color of my urine turned dark and I started itching all over. I called my onc who sent me for an echo. A bile duct was clogged. Nodes lower than the liver were pushing on the duct. They sent me to the hospital as an emergency and the next morning they put a stent in by endoscopy.
I was so upset because of course my liver parameters had risen very high and I was just thinking of my clinical trial supposed to start the next Wednesday. They told me the parameters would go down very fast and not to worry. I suffered a few days after from what they call a slight pancreatitis. I am fine now. I don't know what the implications of this stent are but it is a secondary question for now.
Then last Tuesday as I was walking out the door with my suitcase to take the train to the south of France they called me from the trial center saying that they did not have the slides to retest the HER2 factor and had to postpone the trial to the 19th. I was crazy. They said it would take them 3 days to get them from the hospital where I had had my liver operation. I had really insisted that it was difficult and that I could take care of that. They laughed at me. I wrote a reminder to them 10 days ago asking them if they had the slides. 3 weeks after they requested the slides, the day I was supposed to walk in the door they realized they didn't have the slides! I was so upset. They had the nerve to tell me that if I wanted I could come for a standard treatment right away if I did not want to wait until the 19th.
I am so afraid to have another problem before the 19th because I am waiting too long. AND I still don't know in which arm I will be. On the other hand my liver parameters will be back to almost normal so I figure it is better before starting any chemo. I didn't even have the possibility to inform the clinical trial hospital about the bile duct problem. So the mess has nothing to do with that.
So not much news. I have pain in my sternum I manage with tramadol.
It is not a bone met but a node pushing behind it. For this trial I had to do a bone scan and a brain MRI that were ok.
I don't have much confidence in traditional chemo for me since it never worked. That's why I am risking so much in fighting for TDM1. I still have hope.
I read the posts every day on our site. I am so sorry that there are too many sisters going through tough times. My heart sinks each time I read bad news. But for the new sisters on the site they have to realize that there are more and more of us going well and living good lives.
Love to all. Michka

[fullofbeans]

Michka,

Sorry to hear about delay, I can understand so well having just been through that. I too I have had a stent placed and actually on my way to the hospital now to see what else an be done as my face is now ridiculous. Michka remember what I wrote personally to you about 2 weeks ago. There are 2 centres in france that gives TDM1 as a phase 1 for people with liver function disrupted (even very mildly), you could simply fax you liver function results and they could see if you could be part, just letting you know. They were very efficient when i contacted them (my liver function were normal). You would not need to go to the lotterie if for you it is as important as it was for me. However off course who knows what would work and I understand that maybe you just want to go ahead with what you have which I would understand as the need to go ahead with treatment is pressing.

Much love

[michka]

Hi FOB. How are YOU?
I couldn't contact these phase 1 trials because my liver functions were normal. Now they are not and I could send them my report although the liver functions should go back to normal quite fast. What centers were they? My head is like "Gruyere" as they say in France. You know the swiss cheese with holes. Michka

[NEDenise]

Michka,
I'm so sorry you are having to deal with the stress of all these delays! But...I'm very glad your stent is doing its job.

Reading your last few posts, I am so touched and inspired by your concern for the "new HER2 sisters". You are a remarkable woman to be thinking of others, when you have every right to be completely self-absorbed right now.

I'll be thinking of you and praying for you in the days ahead. I hope the trial randomization turns out exactly the way you need it to!
Denise

[sarah]

Wow I know how frustrating it must be but it sounds like you need to recuperate from this new trial before beginning the next. Keeping fingers well crossed for you on the 19th if one of fullofbeans suggestions doesn't pan out sooner.
bisous
Sarah

[fullofbeans]

A Phase I, Open Label, Parallel Group, Pharmacokinetic Study of Trastuzumab Emtansine in Patients With HER2-Positive Metastatic Breast Cancer and Normal or Reduced Hepatic Function

http://prsinfo.clinicaltrials.gov/ct2/show/NCT01513083

either in toulouse or marseille for france . very mild liver dis function allowed. the arm of normal is most likely full now. the dosage is the same . you do not get ramdomised. if you have cancer in your liver it may well be disrupted function even mild.

Michka. had a tough time. got stent ect too.. but got into the tdm1 arm. I actually phoned the histology department and ask for the sample (Whih is my property) to be given to me and explained to them why so they sent it special courier to the trial centre..the trial had fax a request but was not fast enough because 5 days after they had they still had not done anything about it. Got copy of all my scans on disc from the radiology department and copied my last 3 letter from oncologist and gave that to the trial centre. My hospital yesterday said they did not have to submit anything and where surprised I could not leave it in the hand of the NHS. My secondary nurse helped me doc are too busy. That to say stay on their back it seems this has taken sooo long for you .

What ever you decide you do not have much longer to wait, hang on, I have thought much about you and hoping for the best outcome. Stay strong.

love

[Laurel]

Hang in there, Michka! You have been through so much, but I loved your words, "I still have hope." Bravo! I pray TDM-1 kicks butt and takes prisoners for you!

[Sheila]

Michka

Keeping you in my thoughts and prayers that very soon you can start the TDM=1....you are strong and resilient...hoping that this drug will take care of the mets and you can resume living free of cancer....Always Have Hope and Carpe Diem!!!!

[schoolteacher]

Hope to hear from you soon, MichKa.

Amelia

[Ellie F]

Thinking of you Michka. Hope you get good news soon.

Ellie

[fullofbeans]

Thinking of you and hoping you have some good news too and that they finally started you on something at least hang on

[Jean]

Dear Michka,
Hoping to hear good news. Vous garder dans mes prières .

Jean

[Jean]

Dear Michka,
Hoping to hear good news. Vous garder dans mes prières .

Jean