Update on Oxford...

[JanetG]

Been a busy couple of days since I got back on Friday, from my meeting with Anna Schur on Thursday, colds and sickness in this household, but pleased to say not with me but with my 2 children... But both on the mend now..

Had a very informative consultation with Dr Schur, lovely German lady straight talking, went through all details of the trial, its on faze 2, which means if I was accepted and I responded well then I would be on it indefinitely, 2 tablets a week for 3 weeks then a week off, then start again, the main side effects are nausea and fatigue, but with the help of anti sickness then I'm sure I would be fine, the only thing that may prevent me from the trial is the fungal infection on my chest, but as she said its not causing me to much discomfort apart from the cough, I'm fit and apart from enlarged nodes I would consider myself healthy as I eat well, don't drink and I've never smoked... I'm back there this Tuesday to start the tests for the trial, then back the following Tuesday and Wednesday to complete everything, then its in their hands to see if I'm accepted !!! So fingers crossed X ....

Its just a shame that its not available in Manchester but like I said I would travel so much further if it meant giving me this opportunity, plus Oxford is lovely, and the B+B I found is just 7 mins walking distance from the hospital, so if I need to stay over again I've found the perfect place....

I hope everyone is enjoying this lovely sunny weather today !!!

It does make you feel better when you have the sun on your bones !!

Will keep you all updated and a Big Thank you again for your lovely messages...

Keep trucking peeps !!!

Jan X xx

[Newdawn Administrator]

That sounds really positive Jan and I won't uncross my fingers and toes until you're successfully accepted on the trial! I've got a good feeling about it!

Stay strong and full of hope that this provides what you're needing.

Massive best wishes and thanks for keeping us updated. I know so many people are following your progress and are behind you all the way!

Newdawn

[Justasheet1]

Fingers are definitely crossed as well as many prayers.

Jeff

[PaulaS Volunteer]

Thanks for the update, Jan. I had been thinking of you, and wondering how you got on in Oxford. Sounds good so far...

Hoping and praying that all works out well, and you can get started on the trial soon.

Paula xx

[Calopteryx]

Great to hear from you again, and with such hopeful news. Onwards and upwards!

C x

[dou123]

Hi to am in trail in Manchester Christ's hospital on apt 199anti cancer drug for cll response brilliant I now go every three months i to will be on it for rest of my life no side affects dose not surpres your imunesitum it brilliant that I can now live a normal life again its been an up hill clime but I got to the top and that is better than winning the lottery so hopefully you r trail will do same for you good luck ok

[mikedicks]

I'm on this trial too - don't forget its a 50:50 chance you'll be on normal Chemo - not to put a downer on it, good luck!

[SycamoreN]

Hi Jan, I'm keeping my fingers crossed for you to get accepted on the trial. Dr Schuh is my consultant too and she's a lovely person to work with. All the best.

[nobby00]

so very pleased for you xxx

[DebLea]

Hi Jan

I've been thinking of you a lot over the past week since your last post. I wanted to reply to that post, but I was so stunned by what you wrote, that I couldn't find the right words, my heart broke for you. I'm so sorry. Life shouldn't be so hard to hold on to.

Now your news is so positive, and I hope with all my heart that you are able to join the trial, and that you receive the drug that will put you into remission.

With love and heartfelt best wishes

Debbie

[Cammie]

Go for it!

Hope you are accepted my prayers are with you!

Geoff

[jangreen]

Hi hope that you get accepted onto the trial. I took part in a trial which was in a central London hospital. During treatment I applied and was accepted for a blue badge. This made all the difference in travelling. After treatment it took at least an hour and a half to get home. After four years I am still minimal residual disease negative. Good luck and best wishes

[nvp815]

Wishing you the best of luck Jan. Fingers crossed for you here in the U.S.A.

[ChicagoDave]

Janet -

Good luck on getting into the trial! I have been staying away from my various CLL forums for about a month to keep my sanity, so I had to go back and read your posts to get up to speed. Boy - you've been dealt quite a bad hand! But you seem to have an amazing spirit, so we are all pulling for you. I'm glad Chris was able to link you up with clinical trial - I assume this is the KPT-330 trial?

You have a beautiful smile in your photo - I hope you are still smiling

Dave in Chicago

[Hidden]

Janet

So proud of you, keep strong. Everything has been said in these mails, and I hope all the love and best wishes coming your way help.

Hugs

Bub

[Ruhi9]

Have just read your posts Jan, and wanted to wish you the very best of luck with the tests in the coming weeks. Hope you’ll get onto the trial and be there for your dear children for many many years to come. Keep up that fighting spirit - you’re a true inspiration!

Ruhi9