Update

Hi all, just a quick update on me - I've moved to London from Melbourne to enter a phase 1 clinical trial of ABT-199 plus Obinutuzimab (Gazyva) at Barts Hospital. It's been a massive upheaval, and I've had to leave my children in Australia for the time being so I'm pining somewhat, but I'm here and excited about getting some treatment for my relapsed and refractory CLL/SLL. I've changed my username to reflect the country change. I'd be very interested in joining any support groups which are taking place in London, I'm living very close to Barts so if anyone can point me in the right direction I'd be grateful.

31 Replies

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  • What a bitter/sweet situation to be in. The exciting prospect of treatment but leaving your children.I wish you all the very best. May the time fly by for you. Let us all know how it goes. Prggy. Xx

  • Thanks Prggy x

  • Welcome to the UK DebinOzinLondon,

    Sorry you've had to travel so far for this.

    There is a meeting of the CLLSA in Bristol on 28th September if that's close enough for you.

    More local support groups I dont know about but others might (I'm in Derbyshire so not sure what's happening in London area but others will.)

    If Bristol is possible for you the meetings are normally very good. I plan to travel down so hopefully might catch up. Regardless, hope your treatment goes well.

    Rob

    << Forgot to say - details of meeting are in the pinned posts >>

  • Great thanks Rob - I'll see how that fits in with the hospital schedule - might see you there!

  • Wishing you a successful trial and hoping you have support from family and friends whilst here Debs (i presume you're originally from the UK?).

    It's hard enough going through treatment without having your loved one close. I feel for you.

    Sorry I'm not from that area so unaware of support groups but please feel free to post online anytime. We are all supporting and following your progress.

    Warm best wishes,

    Newdawn

  • Thanks Newdawn and everyone else. Yes I haven't been in Australia very long but all my family moved out with me (my Mother was born there and my parents decided to retire there so we all followed). She's coming to live me when I start the trial as I'll need a carer and then the kids will fly out in November to have their summer holidays in wintry London - I'm now falling back in love with the city, go back to my old job here next week which will help take my mind off things and I'm going to start researching schools in case it gets all too hard to go back to Australia given I'm going to be drug dependent. Very grateful I have the opportunity - apparently they're having trouble recruiting patients for phase 1 trials here ever since Ibrutinib was approved by NICE (we haven't even got that in Australia yet).

  • I'm reassured to hear you're going to have family support Debs. This rotten CLL has certainly dictated the course of your life but hopefully the future will be brighter once the trial is successfully completed.

    All the best,

    Newdawn

  • Hi Deb welcome back again, I have provided a few support group links and meetings in my 1st reply, wishing you the best and you can get to a meeting.

    You have raised an interesting question. I think it may be the Ibrutinib compassionate access programme last year and the current Idela compassionate early access programme that may be making phase 1 trial recruitment more difficult

    This is just a quick update for all about Ibrutinib access in the UK. Ibrutinib it is only availble to England NHS via the national Cancer Drugs Fund for relapsed refractory CLL. This bridges some of the gap while we await NICE proceedings. The CDF is currently reviewing its listing so it may not remain CDF listed for long.

    At the moment NICE have not approved Ibrutinib for England and Wales NHS use , the appraisal & submission was delayed and is now about to recommence and all being well if approved Ibrutinib could come available to England/Wales 1st line 17p TP53 & relapsed refractory NHS patients in the early part of next year.

    Good luck with your trial, this is a therapy we all will be watching it is pioneers like yourself that are paving the way for the rest of us.

    Nick

  • Great thanks Hairbear - looked forward to meeting you in the not too distant future - I will try to make it to Bristol and, if not, will see you at Barts in November. Will definitely keep everyone updated about this exciting trial on here too.

  • I hope for the very best outcome for you in this trial . And I pray for everyone in this battle may God bless you and all.

  • Good Luck with your trial, don't know of any local support groups as I'm in Glasgow, but do keep us updated on how you get on

    Elle

  • My best wishes deb in London. May the trial go well for you . keep us all informed please. We are with you.

    Sue

  • Thanks for letting us know what is happening with you, Deb. I am so happy for you getting the better option available to you, but all at a personal cost. Hopefully your kids can travel asap to be with you. My very best wishes with the trial and hang in there, sending you lots of positive vibes.

    I have had another setback and had to stop the Ibrutinib due to severe neutropenia (0 neuts again and a hospital stay). I am now in WWW again to recover physically as much as possible. I am very interested to hear your findings with ABT 199 for my expected future treatments...

    Anneke

  • Sorry you've had such a set back Anneke - will definitely let you know how I get on with ABT-199

  • Wishing you every possible good luck with the trial and hoping that you are blessed with lots of support on the ground over the coming weeks and months. Do keep posting and know that we hope and expect the very best news for you!

  • Hi Deb

    Love the new username addition. Hope things are going well as can be and I'm sure Skype is getting a work over with the family back here. You're in our thoughts, prayers and conversations.

    Regards

    Mike

  • Hi Deb

    We are all wishing you a successful outcome in this trial. Should you make it to Bristol you can be sure of a warm welcome. Well done you for being prepared to travel for this treatment.

    All the very best

    Bubnjay1

  • Wishing you success and healing from the USA!

  • That is quite a change to make a move so far away. I remember being in Brighton for 3 months Jan to Mar. No snow but lots of wind and rain. Anyhow I would do the same to achieve results that will ensure my longevity with family. Please let us know how you do on the trial. The combination may be a winner. Best of luck!

  • Welcome back to the UK DebinOzinLondon

    Sorry for delay posting am just back from a camping holiday without wifi in an internet black-spot

    Rob has mentioned the Bristol meeting on September 28th if you can make it there it would be great to meet you, I missed you at CLL LIVE Canada you do get about. So pleased you have found a suitable treatment programme and sympathies at how much of a sacrifice this has been for you and your family. Wishing you a great November back with the Kids.

    As far a local London CLL support groups go I suggest a visit to the Macmillan information centre at Barts when you are next there, the information officer has an interest in CLL and supports us at our Bart's CLLSA meetings/conferences, the next will be held at the Grand hall Bart;s on Monday, November 30th cllsupport.org.uk/events/up...

    Lymphoma Association and Leukamia Care have London based support groups that may be of interest,

    Lymphoma Association local support groups listing lymphomas.org.uk/how-we-can...

    Leukaemia care local support groups listing: leukaemiacare.org.uk/suppor...

    There are still places available for Brsitol, if not there hope to meet you at Barts at the end of November.

    Nick

  • Hello Deb

    I thought I should join the many good wishes that you have received as I am also a Barts patient. I was so pleased when they agreed to see me as I live in the south west. I don't think the care can be bettered and applaud your brave decision to come back here for this trial. If you see research nurse Pat, you will be in very good hands indeed.

    As for me I'm currently on ibrutinib, feeling well and just attending 2 monthly as an outpatient. The outpatient department, however, is definitely not 21st century!

    I sincerely hope that all goes well for you and your family during your enforced time apart.

    Kindest regards

    Charlie Girl

  • Great thanks Charlie that's wondeful to hear - much appreciated

  • Dear Debbie

    I am in the same situation. I suffer from CLL and I have treatment (idealisib)

    I live in Worthing. I could meet up with you in London (middle of September) if this is convenient for you.

    I hope the your treatment goes well.

    kind regards

    Emma

    Admin - Contact details removed for your safety

  • Thanks Emma - I'll pm you my details. Best wishes Deborah

  • Good luck Deb - that particular drug sounds extremely promising so I am excited for you but feel for you as such a young mother. Are the kids young? In any event you are are very fortunate to have this chance and in the long run they will be glad you've made this move.

    So should I be reading your posts with a British accent or still a bit of an Aussie twang? Just curious.

    My son is going to see "da Bears" this Thursday but I'm pretty sure no one will have an accent at all there...

    Dave in chi town

  • Thanks Dave - yes they're little and I just face timed them in Australia and my 5 year old daughter asked me if I was coming home today which was hard. I'm booking flights for them to come here in just under 4 weeks time - I may have to fly back to see them before them if I can face the journey again. It's very hard being away from them (2 boys aged 11 and 8 and a girl aged 5). Good news is I now have my referral to Barts so on on and all things British - I've always had a mixed up accent - grew up in the north of England but my mother came from Sydney and we all adopted some of her rounded vowels!

  • Awwwww yes my wife has a hard time if the kids are away for a night! Youngest are twin 11 year old girls of our 5 so I get it. Stay strong! You'll be fine and of course the kids are WAY more resilient than the moms as we all know ;)

    And you've made the right choice to pursue this amazing opportunity so wishing the best of luck!

  • Hi DebinOzinLondon !

    I have high hopes for you on the ABT199/GA101 trial. I'm in the trial in the states..San Diego California, but for first timers. My ALC was high so I started with GA101 in the beginning of Feb 2015 then in the 3rd weekof Feb., I started the ABT199. GA worked extremely well for me even in the first day, which I finished the 6th and last cycle at the end of June 2015. Now I'm taking only ABT which will be completed at the end of Dec. I hope the trial is as good for you being relapsed/refractory as it has been for me!! For me it has been fairly easy as far as the GA101, the ABT199 made me nauseated but my Dr quickly jumped on that and I'm no longer getting sick. The other peeps in the trial had no problem with either drug. This trial I think will be worth the temporary displacement of your family to get better. Missing your dear babes is tough for sure and hopefully when you all get together it will be all ice cream and cake !!!

    Denise

  • Thanks Denise that is so reassuring - good luck with the rest of your treatment - hoping you get that coveted MRD negative status (FCR couldn't even get me there!). My babies arrive in less than 2 weeks - I can't wait to see them and hug them in the flesh. Thanks for taking the time to message.

    Deb

  • I hope you get there this time. So happy for your reunion coming soon. I hear your excitement in your words !

    Denise

  • Hi Everyone - the trial started yesterday hence me being awake in the middle of the night and my addled brain can't remember my new login details on here! Somehow managed to login to my old account. Just wanted to let you know I'm blogging specifically about this trial journey for any of you who are considering ABT-199 (venetoclaz) and Obinutuzimab down the track. It's abtandme.com. I'll of course drop by here to fill you in how I go as well. I'm the first Barts patient to start this arm of the trial and only the 49th patient in the world since it began 2 years ago so have struggled to find anyone who has detailed how they've coped with the therapy - hopefully my blog will help others.

    Hope you're all doing well.

    Best wishes

    DebinOzinLondon

    abtandme.com

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