Hi Moomy

My first 'dose' was on the 16th December, second 6th January, I'm due a PET scan this Friday (results Tuesday 23rd) , third dose due 30th Jan (I'm off to see Strictly Come Dancing so I put the schedule out :)) and the last either 17th or 20th Feb.  If all goes according to plan..... Allo SCT in March

With Brentuximab I feel like i have flu (without the cold bit), ache all over, especially my neck and lower back.  I also have loss of feeling in my fingers.

Other chemos wear off but this one continues all the time, i suppose on reflection it does get slightly better towards the end of each 3 week period.  I hope its worth it and i'll know when i see the results next week - fingers definately crossed X

 

GillyJ

Hmmm, Gilly, the flu like feelings weren't one which Caz reported, and the tingling in fingers was gradual, she found it became more of a bother while going through the allo, as one of the drugs also produces that, however they say it will reverse as she comes off it. (She did say she needed to be near the loo at times, though!)

I'm surprised they are PET scanning you this soon, but really hope it shows a difference! They did like to keep the three week sequence as accurate as possible, not minding a few days but not wanting much more.....Caz, being a freelance musician, found keeping to it quite hard at times, one tour abroad involved her returning three times, for SGN, scan and another SGN. At one time she saw the inside of 11 airports in 36 hours! However, since she had been told how well she was doing, she did persevere....as the alternative doesn't really bear thinking about! 

Keep posting! 

Hi again, just thought you might find some of this (very American) booklet helpful.....http://fb.me/15ptW1cFO

Moomy

oh - i didnt see your email re the american link but  I will take a look tomorrow. 

I just want to shout from the roof tops that today, I got the news that my scan is ALL CLEAR!.  I have celebrated by having a rather fattening lunch and two glasses of wine :)

To stabilise the condition I will have another dose of Brentuximab on Monday 30th  and during week commencing the 20^th January I will be admitted to hospital when they should have my donor lined up to start my allogeneic stem cell transplant.  I will be in hospital for around 6 or so weeks.  UCH here I come.

I will ping you as I have a few questions on the transplant and also want to say many thanks for your support so far - it's appreciated

GillyJ

YAY! I am sooooooo thrilled for you! How fabulous! Ask away...... I will do my best to answer any queries x

Hello there, I'm kinda on the same track, after several treatments now trying to get the Brentuximab Scheme. Would you please tell me how much does each cycle cost?

OK Best to know - I've 'failed' ABVD, ESHAP and Mini BEAM. Gemcitabine was used to keep me stable. I had the opinion of a leading professor (actually 3 experts, but thats another conversation!) that this was the best option for me. My consultant wanted to give me 4 cycles of Brentuximab as an outpatient. It's not available on the NHS and is awaiting approval from NICE. It has however been approved by the FDA. My private medical wouldn't fund it as it hasn't been approved in Europe. My understanding is that the clinical trials are over (or I missed the boat on this one)? It can be 'purchased' in the UK through the appropriate channels Each dose was £10,600 or there abouts - personally I've never dealt with the bills. I will only have 3 cycles Your consultant would be able to advise if this is the right course of treatment for you. It's a lot of money! But obviously I can only speak for myself - it has been worth every penny. I never needed to be admitted into hospital, i just needed regular blood tests Happy to give further info if u need it. I was very fortunate, my company footed the bill. We were going to pay personally, my hubby agreed I was worth it! But amazingly they stepped in and saved me a lot of money I'm one very lucky lady, I appreciate that gillyJ

Certainly you are a lucky!!! And there is still good people in the world for sure. Basically, I already went through AVBD (6 cycles), GDP (Gencytabine - 3 cycles), Bendamustine (3 cycles), ICE (3 cycles), Mini BEAM (1 cycle) and finally an Autollogous SCT. Unfortunately, I still have some nodes active, therefore my pshycian already agreed that Adcetris is my last chance. In my case, I have to pay for it, that's why I was asking the estimated cost to start raising the funds. Thank you very much for you answer and I'm really glad to here you made it !!!! : )