clinical trial: Dear friends I thought I'd let... - My Ovacome

My Ovacome

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clinical trial

francescahannah profile image
19 Replies

Dear friends I thought I'd let you know that I started the phase 1 trial into a new drug to cut off blood supply to the tumours at the Christie. Its very time consuming but not had any nasty side effects so far. I have to go every weekday to get an injection and this first week was a lots of blood tests, ecgs, etc but apart from mondays and some longer days most days will just be about an hour and a half so I'm relieved that I can fit in quite a lot of my usual activities like tai chi, yoga, aerobics, swimming etc. Only thing I will miss is my monday morning volunteering at manchester donkey sanctuary but will see my mates and get donkey cuddles some weekends. I'm feeling really well and positive most days. doing my best with nutrition and visualisation and seeing my lovely little grandaughter Lily when I can. Got lots to live for especially the birth of my second grandchild due in May. If you haven't already I really recommend reading Radical Remission which I found really inspiring.

I had a big party with lots of dancing for my 60th last saturday - a milestone I didn't think I'd se a few years ago!

Love and hugs

francesca x

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francescahannah
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19 Replies

Belated Happy Birthday Greetings, its great when we achieve those milestones. I thought I wouldnt be here to renew my driving licence or retire from work but was able to do both, Its amazing how you can make yourself do things/ All the best

francescahannah profile image
francescahannah in reply to

thank you, so glad you've achieved some of your milestones too

Francesca x

Lily-Anne profile image
Lily-Anne

Wow, I was wondering how you were doing. That is a hugely brave step to go for a phase one trial. Your family must be so proud of you. I so hope that this is great for you and brings with it an incredible remission. All power to you.

LA xx

francescahannah profile image
francescahannah in reply to Lily-Anne

thanks Lily-Anne, got all fingers crossed this trial is worth it but don't think I want any more chemo. Hope all is well with you

francesca x

Beth25 profile image
Beth25

Wishing you all the luck in the world and hope this trial yields good results. I've been on two in the last three and a bit years and apart from the results I think one of the key things I've benefited from has been having the continuity of care that comes with a trial package. I really appreciated arriving at the chemo ward and knowing that I'd be seeing the same team of trials nurses and be more closely monitored in between appointments. I really think it contributed greatly to my recovery and brought me great peace of mind during the process. I hope you have the same experience.

Best wishes

Beth

francescahannah profile image
francescahannah

Thanks Beth, I'm glad you benefitted as I'm hoping to and I agree with the extra benefits of continuity and the unit is much nicer than the chemo suite!

francesca x

thomas62 profile image
thomas62

Hi Francesca,

I have just been taken under the wing of The Christie. I hope the new Trial goes well - what is it for? I have read Radical Remission and is a book I keep looking back at.

Do you take supplements and/or have particular diet that you follow? I would be very interested to know!

Gwen

airfemale profile image
airfemale

Can I ask what is the name of the drug you are trialling? Thanks Sharon

francescahannah profile image
francescahannah in reply to airfemale

Hi Sharon, here are drug details. cheers Francesca x

ALM201

ALM201 is a highly potent, non-toxic, targeted microtubule binding agent in Phase 1 for the treatment of solid tumours.

Targets cells where CD44 is activated including:

Vascular endothelial cells

Migrating tumour cells

Tumour initiating cells

Three modes of anti-tumour activity

Anti-angiogenesis

Anti-metastasis

Inhibition of tumour initiating cells

Inhibits endothelial cell migration stimulated by a range of growth factors

Efficacy shown in a range of xenograft studies

sharonforce profile image
sharonforce

That's great news! Good luck with the trial - i hope you have great results. What is the name of the trial?

Sending best wishes

Sharon

X

francescahannah profile image
francescahannah in reply to sharonforce

Hi Sharon, Thanks, Here are the details of the trial drug

ALM201 cheers Francesca x

ALM201 is a highly potent, non-toxic, targeted microtubule binding agent in Phase 1 for the treatment of solid tumours.

Targets cells where CD44 is activated including:

Vascular endothelial cells

Migrating tumour cells

Tumour initiating cells

Three modes of anti-tumour activity

Anti-angiogenesis

Anti-metastasis

Inhibition of tumour initiating cells

Inhibits endothelial cell migration stimulated by a range of growth factors

Efficacy shown in a range of xenograft studies

Hertsmum profile image
Hertsmum

Belated happy 60th birthday, your story is so inspiring for relative newbies like myself ( just had 2nd surgery and about to start 2nd line chemo). Keep going and good luck with the trial the drug sounds very promising. Best wishes, Madeline x

francescahannah profile image
francescahannah

thanks Madeline, good luck with your chemo

francesca xx

Julie40 profile image
Julie40

Francesca you're a real inspiration.

Good luck on the trial. It was developed here in Northern Ireland and I know my Oncologist at Chrusties was the first to treat a patient using it. Hopefully a break through for us. You attitude and positivity is amazing xo

francescahannah profile image
francescahannah in reply to Julie40

HI Julie

Thank you for your support. Is it prof Jayson? He's the one treating me and I saw that it is made in Belfast which is great rather than USA for a change. Do you travel over for treatment?

Francesca x

Julie40 profile image
Julie40 in reply to francescahannah

Yes it's Prof Jayson. I travel over for treatment. I used to go every week but now it's every for weeks as I'm on carbo/caleyx now. I don't mind travelling as I have faith in him and I know he would do everything within his power to help his patients. An entirely different experience than I had at home xo

annielawrie profile image
annielawrie

I wish i i lived nearer the Christie ,so i could see Prof Jayson. And yes Julie i have so much faith in him,he is an amazing Doctor. I live in Northamptonshire.So quite a journey to Manchester. But if i felt like i need to see him again ,i would get there.Meg xxxx

Dollysmum profile image
Dollysmum

This sounds so very positive. I am waiting for my biopsy results and then referral to Liverpool Womens, which I believe is a very good hospital. But this has made me wonder if I could be referred to The Christie?

francescahannah profile image
francescahannah in reply to Dollysmum

Hi, I've heard good things about the Liverpool womens but the Christie does a lot of research and has quite a few doctors specialising in ovarian cancer. People travel for miles including one from Belfast and even Berlin!

i'm sure you'll make the right decision for yourself xx

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