Had appointment yesterday with consultant and signed my consent form to be sent to Leeds for entry into FLAIR trial. I know it isn't a given thing and I have to wait for the results of my P53 blood test and confirmation I meet the criteria, but my stomach is churning and I didn't have much sleep last night. I have been on W&W for 3 1/2 yrs and thought I would be for a lot longer but these damn lymph nodes decided to enlarge in my neck, stomach and groin so the time has come for treatment. I knew it was time because I have just had a particularly bad virus, made worse by the nodes, where I was experiencing light headedness which was like vertigo which I have had before and my neck felt so heavy. I have a lovely consultant and equally lovely research and Macmillan nurse for which I feel very lucky after reading some of the stories on here regarding ignorant doctors etc.
If all goes to plan and because you have to start treatment within 12 weeks of having CT scan, I should start beginning of April.
I will keep you posted!!
Best wishes to all.
Sally (UK)
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sallyplest
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Best of luck with the trial. My Mum is about to start the FLAIR trial too once we have all her results back so keep me posted on how you get on and which treatment you end up on.
I was in the position you are now at about this time last year, when I became very aware of having an enlarged spleen. I started on the Flair trial last July, and got the IR arm. So far the treatment is working well, and I feel generally better. Sorry you didn't get longer on W&W, which is obviously better than having to undergo treatment. All I can say from my experience is that the worst bit is the time just before starting treatment, and that once I'd had the first round, it didn't seem so bad. The one thing that caught me by surprise was that I had to have the Rituximab infusions over two days - this is something to do with having a high white cell count making an adverse reaction more likely, so Ritux has to be given more slowly. So, two long days at the Marsden for each round of treatment. Make sure to take plenty to read, water and food to nibble or whatever else you need to help pass the time. Luckily the hospital provided a soup and sandwich lunch.
Glad to hear you've got a good consultant and nursing support - that is so important. Good luck with your treatment, and let us know how you get on.
If I'm honest Sally, this is the point on the CLL journey I fear the most because it's such a big deal for all of us to need to start treatment. However, for that pivotal time to be accompanied by the excellent surveillance involved in a trial would greatly minimise the fears for me and as a result I really hope the FLAIR trial becomes a reality for you. I can see why it's become necessary for you to start treatment and getting rid of those nuisance nodes will feel wonderful I'm sure!
With the really good medical team you obviously have, put away your anxieties which are entirely natural and enjoy the renewed health coming your way.
Let us know if you get on the FLAIR trial and which arm but most importantly keep us updated as to how it's going.
My husband is on the FLAIR trial. Whatever one you are selected for is amazing! So try and keep an open mind to both. Also being in a trial they will monitor you more closely so you really are on a win win.
My husband aged 48 was only in W&W for about 18 months and initially we were gutted but then thought well at least he can crack on and get it over with and try and get our lives back. He felt better almost straight away, like others he forgot how it felt before fatigue set in and really sprung back to his old self!
Sally - I posted this before but even though I knew treatment was coming (after 3 1/2 years), when my oncologist told me I would be starting, I teared up...
Wish you well and do keep is posted. I had CLL diagnosed 8 years ago, went through chemo in 2012, it came back in 2014, did Ibruniteb pulled for 2 years then had lump on kneck in oct of 2016, turned out to be Richtors Transformation, large B cell non Hodgkins lymphome, went through Rchop, didn't get it, now doing RICE, very tough, then doing stem cell harvesting... You should understand how 10% of CLL patients could get this and see what your team has to say. I'm always all ears is why I brought it up. Wish you well!
I'm not a doctor and don't know the data but this doesn't sound to me like a Richter's transformation as Wchdale mentions...but rather CLL progression to treatment.
While RT is a small concern in all CLL we have learned a great deal about it in the past few years, and there are now recognized and specific markers, like Trisomy 12 and NOTCH1 mutation, as well as stereotyp B cell receptor driven by the IGHV gene VH4-39.
I wish you all the best and hope you meet the FLAIR criteria... you sound like you have a great team assembled and let them do the heavy lifting for you...
Please let us know your test results... you will be fine 😄
Thanks Peggy, that's exactly how I feel. I've been standing on the edge of the precipice and now I'm about to jump over. I really don't know how I would have coped without this group, I felt isolated before I discovered it, I think more people around us than we realise have CLL, who probably haven't been diagnosed yet!
Very true Sally. It's only a matter of chance whether it's discovered or not. Sometimes I wish I had been left in blissful ignorance and other times I am grateful that I know in advance. I think for those who launch into immediate treatment it must be a huge shock.
On the positive side though, I have 'met' some wonderful people from all over the world who, but for this, I would never have known.😀
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