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Worried

Hi,
My boyfriend has had suspicions confirmed today that he has CML. He's 39 and in general good health, and is thinking of doing the Spirit 2 trial. Does anybody have any experience of this, or of the drugs used? I'm really worried and would welcome anybody's support, however trivial it may seem. Thank you in advance,

Rosie.

 Dear Rosie... welcome to this forum and please try not to worry too much, although I know that is easy to say. Your boyfriend has the very best chance of responding well to the drug and if he is on a trial it means he will be monitored very closely by CML experts. I have copied the current protocol below. It looks like the imatinib (Glivec) plus interferon arm is now closed so I assume he will be treated with either 400mg or 800mg imatinib.

Best wishes,

Sandy 

Newly diagnosed patients

SPIRIT 2

Newly Diagnosed CML within 3 months of diagnosis:

 2 arm randomised clinical study/number of patients per arm = 425 

randomised to

1. imatinib @ 400mg day

OR

2. dasatinib @ 100mg day 

 http://www.spirit-cml.org/

Hi Rosie,First  the out look for people with CML has never been better,The drugs are very effective and for many the side effects are either very little or easy to cope with,most people with CML live normal lives.The spirit 2 trial looks very good.The biggest and best advice I can give is get treated by a specialist CML clinic,I attend Kings and there are other good clinics dotted around the country post your location for advice.As a last line of treatment is a transplant has your boyfriend any siblings?.

best regards

Michael

Beth

It is worrying at first for sure - I am 42 so not a lot older and was diagnosed last May, by chance and without any signs or symptoms.  But I was very worried - it's entirely natural.

I chose not to go on Spirit 2 but to start imatinib instead, mainly because of the extra monitoring involved in the trial but it was a very personal choice, I wanted to go with the "tried and tested" and there seemed no particular reason in my case why one of the others would work better - for some they might.  You or your boyfriend should ask what the trial would involve and weigh up the different dosing regimen (how you take the drug and when), what's involved in the trial and each drug's possible side effects and then decide.  And whether you want access to the new TKIs now without having to wait for NICE to approve them (though you won't necessarily have the choice as I believe assignment to the drugs in the trial is random and includes imatinib of course.

Either way, have faith and confidence. Imatinib has worked really well for me as it has many people, and I'm currently "undetectable" which is great. A few side effects but nothing major and they settled down quite quickly.  The other drugs are newer and may work faster for some people - that's the point of the trial as you know - and that may improve the already generally good outlook further.

Good luck - and believe the drugs will work.

Richard

Rosie, I am not sure! Apologies.

Seeing sandy's response, I think you (Rosie) are talking about the same trial I was offered, which was imatinib vs dasatinib vs nilotinib as first line therapy (SPIRIT 2).  If so, that's what my response was aimed at - the drugs are taken slightly differently and have different side effects. But all are good.  I echo what others say about specialists - crucial and very reassuring.

Richard

Hi Rosie

I was diagnosed last October and decided to take part in the Spirit 2 trials, and was put on the imatinib arm.  I was told that the trial involved imatinib and dasatinib, and that the allocation is completely random.

So far, things are going well, and being on the trial means that you get a little bit extra attention - I have to fill in a questionnaire each time I go, and I think they take a little more blood than they might otherwise, but that's all.  I see trials as the best way of improving the care we currently recieve, though of course everyone must decide for themselves whether they want to participate.  I hope your boyfriend does well on whichever drug he gets.

Olivia

Hi Rosie

 

I was dx in November 09 and chose NOT to go on the trial because I wanted to use a lot of supplements, Indian herbs and the usual vitamins etc and was led to believe that if you did go on the Spirit Trial, they would prefer it f you were 'purely ill' (my words!) so that they could assess clearly the effects of the drugs.

I was therefore put onto Imatinib anyway and am doing well on it so far. It's never been better to have cml as far as my research has proven.

Good luck for your boyfriends treatment - he may have some mild side effects whilst the body adjusts. I got very achey bones, joints and muscles, plus dry skin and cramps but they have all eased off.

It's great he has you showing so much interest and care and this site is a fantasitc support!

Beth

  SPIRIT 2.  Along with the simple study design, patients can also be confident that their disease undergoes regular monitoring for response against study milestones.  Managing patients in clinic is simplified by following the trial protocol for monitoring investigations as well as dose adjustment for any toxicity. 

 with patients randomised to either one of 2 arms:

imatinib @ 400mg daily

or

dasatinib @ 100mg daily

Hi Rosie

 

I was diagnosed last september and accepted to go on the Spirit II trial I am on dasatinib.  I was in total shock at diagnosis Im 44 and have two children aged 8 and 10 at the time.  It takes a while to get your head around things but 8 months on I am doing really well I have had a major molecular response to the drug. I  thought I was in good health before I was diagnosed apart from getting tired but I put that down to having two active kids and generally being a mum.  I was diagnosed after having a routine blood test. Now I can quite honestly say I feel even better and have more energy.  The key is to keep positive don't let it take over your life.  This support group gave me a posiitve outlook and if you read through peoples blogs you will see that  the treatments available have come on so much even over the last few years and they are developing new treatments all the time - you never know in five years time there may even be a cure. 

Best wishes to you both

 

Jacqui

Thanks Jacqui,

Would you recommend the Spirit II trial then?  So many people have different views either/or, it's very confusing..  He's seeing the nurse on Monday, and will talk it through again then - it's been a bit difficult to sit down and think so far.  I'll tell him of your positive experiences anyway.

Best wishes to you and yours too!

Rosie

Thanks Beth,

Yes, this site seems great I just found it by accident.  'Purely ill' - for some reason that made me smile...  Doc mentioned some side effects.  There are so many questions we wanted to ask, but were far too busy trying to take it all in (at least I was!), so it's great to have other people to talk to about it.

 

Best wishes,

Rosie.

Thanks Olivia,

I'm glad you're doing well.  The only thing that slightly worries me is that the other drugs seem to be something of an unknown quantity, which is I suppose why they need to monitor you that little bit more, but even if you chose not to go on the trial then presumably you'd have to be watched fairly closely anyway, at least in the first few weeks/months. 

Best wishes,

Rosie

Thanks Richard

(btw, there's a Beth who posted on here above, so now I'm really confused!)  The trial does seem to be random & it's something we need to think over.  & I hadn't heard of Nilotinib, or maybe the doc mentioned it and I missed it. 

I know that in general prognoses are much better than they were in the past, and I'm trying to be as positive as I can, but due to previous circumstances which are far too long winded to go in  to here, I am more worried than I otherwise might be.  I will try to believe!

Best wishes,

Rosie.

Hi Michael,

Thanks for your reply. I currently live in Cardiff & the Chap lives in Cheltenham (we haven't got around to the living together thing yet, but it's only an hour apart).  David is an only child & obviously his parents can't donate, as they each only have half his DNA (is that it?), so if the worst came to the worst, presumably he'd have to go on to a register for a match.

I need to explore this site properly, it seems brilliant.

Best wishes,

Rosie

Thanks, Sandy,

I'll pass your comments on to David, and also will encourage him to join up.  I haven't had the chance to have a look at the blogs on this site yet (am writing this from work, oops) but this seems an excellent group.

Best wishes,

Rosie.

PS I've just realised I was responding to comments backwards, so I've just read your first post.  Sorry! Will pass that info on as well.

Hi Rosie


Just to let you know I live in Cardiff if it would help to talk to someone close by....


Janet

Hello.

I'm David, as mentioned above by Rosie.

 

I'm 39 years old, and my diagnosis started earlier this year when I asked for a blood test via my GP.

Blood tests aren't an unsual thing for me - 5 years ago I was treated for Acute Pancreatitis, and although I've had my

Gall Bladder removed, I'm keen for this condition not to return, although I do like a glass of wine :)

 

For serveral months now, I've easily got tired and not really been sure whay this is happening.

At least now, the 5 weeks I had to wait for blood test results is over, and I know what the problem is and can start planning to deal with it.

 

David.

Yes I would recommend it for chance to get dasatinib, it may well turn out that he will get imatinib as the computer chooses who gets what, but it is my understanding that if it is not going to plan you consultant can take you off it.   You will get monitored closely because it is a trail.  It does seem scary at first but all the drugs seem scary at first.  I remember the night  I had to take my first tablet and all types of things went through head after reading the side affects but apart from muscle cramp in my knees and legs and a few rashes appearing I was fine.  These side affects went within 10 days and now I dont get side effects - I hope this helps but we are all individuals and my experience will be very different to others  I think you should go with your gut feeling on what might be right and what you feel comfortable with.  Although the word trail was a  scary thing to me I also thought in the back of my mind that my consultant seemed to have a positive attitude to dasatinib and to be honest when i was selected for it I felt very lucky

 

Best wishes

 

Jacqui

Hi David and welcome to this forum. 

If you have to face up to a diagnosis of leukaemia (or any cancer for that matter) then best to have to face a diagnosis of CML. As you do your research you will learn that the sort of therapy now used to treat CML has spawned a new way of looking at how to tackle the cancer cell itself and imatinib (Glivec) was the 1st oral therapy which 'shut down' the signalling pathway which caused the abnormal cell to live on. Glivec blocks the protein the drives this process, so in time the normal white cells will dominate and your immune system will behave as it should. This is a rather simplistic explanation but it is basically what happens when you take Glivec. Dasatinib and nilotinib are the 2nd generation of this kind of drug...i.e tyrosine kinase (a signalling protein) inhibitors. Imatinib is a revolutionary treatment and its use in CML has over 10 years worth of data to support its use as first line therapy. 

Stem cell transplantation is the only known cure... but this is a highly risky and invasive process which needs a well matched (pref. sibling) donor. There are of course new ways of using the transplant process along with TKI inhibitors but this is not something to take on without some careful research and without an available donor.

For the majority of CML patients diagnosed in chronic phase, the first line therapy is Glivec. This drug has changed the whole prognosis for the majority which means that a normal life span can be expected, and with that a 'normal' life. 

Sandy

I too have had acute pancreatitis  and had my gall bladder removed,so I know what you mean(as with pancreatitis cml shares the night sweats),I am diabetic so Nilotinib  is not open to me as a drug of choice,strange that it took 5 weeks for the blood test results? I was dx within 24 hours of the hospital taking a blood sample.

My boyfriend was diagnosed on the 7th March this year and shortly after started the spirit 2 trial he was given the Dasatinib! Today less than 2 months on he is confirmed to have haematological response which is like the first stage of remission!!!!

I'm not sure which phase your boyfriend is in with his CML but I would be happy to answer any questions! I did all the research and investigating when he was given the option i fed back to him all the pro's n con's and we made the decision together.

I know i found it hard thinking he was on a "Trial" drug! But the drug isnt fresh out of the lab its actually been around for some time!

Would be happy to help!

Kerry

Hello Again everyone :)

I have some good news to share with you.

In just 4 weeks of taking Imatinib, my White Blood Cell count has dropped from 45, back to 22 and then down to 2.


On this basis, I now only require a Consultation once per month.

 

The side-effects I'm coming to terms with are mild pain seemingly within my bones and a problem keeping my body temperature constant.  I tend to feel hot, but be unable to keep warm.  Additionally, my gums are bleeding.

 

In the first instance, I get good relief from pain from Ibuprofen, and in the second instance I've been told that Corsadyl mouthwash will address the bleeding.

 

I'm very happy to have this news from my Consultant.

 

David.

Dear Janet,

Sorry for the delay, I haven't logged in here for ages.  It would be lovely to meet up at some point, if you'd still like to.  I work in the Central Library & am there most days, or you can contact me on here (I promise I'll log in more often). Thanks for your support,

 

Rosie.

Hi Kerry,

 

That's fab news for your boyfriend (and of course for you)! David in the end was put on Imatinib, but results have been very encouraging. (WBC almost as normal)  It was caught early on enough for things to work most effectively, I think.  But he's still getting very tired.

I'm not as worried about it as I was at the beginning, but it still weighs on my mind...

Take care,

 

Rosie.

hi there everyone!

i got diagnosed on the 1st may of this year....my mams birthdays of all days. the day i got told i just screamed the hospital down!  it was the word i heard that scared me because up until now i had a vision in my head of what leaukeamia does to people. that is now not the case. once i plucked up the courage to look on the internet and read other peoples stories i now feel so much better and at ease about the whole thing, i am being positive about the whole thing now and i am determined not to let this grind me down. medication is coming on leaps and bounds now, one day i believe that cure will arrive.

to be diagnosed was a hugh shock as i hadnt really any symptoms apart from a pain in my left side that didnt go away, thats the reason i went to the GP. i got sent for blood tests the same day and that night the hospital rang to say my wbc was high and i was to go up to have more tests. my wbc was 350. the consultant came the next morning to tell me he was 95% certain it was cml but he needed to do a biopsy to confirm this, 2 days later the results came back and i got the comfirmation. the pain turned out to be my spleen which was swollen quite a bit!

i was put on medication to bring my wbc down which they did really quickly, i was on klexane had 10 bags of fluid as i was so dehydrated and to help the wbc by the time i was discharged 8 days later my wbc was down to about 140. two days later i had been made an appointment at manchester to talk to a specailist.

i decided to take part in the clinical trial and i drew dasatanib. i have been on these for just over two weeks, side effects are slight aches and pains tiredness but that is due to low rbc and slight headaches which are controlable.

i am due to get married in december and there is no way i am postponing it!

if there is anyone that would like to talk that would be lovely.

 

take care everyone.

alison.xxxx

 

 

hello Rosie -

Email  me - dinasperrys@hotmail.com - and then we can arrange something.

Take care, glad to hear David is doing well.

Janet

Hi Alison and welcome to the club that no one wants to belong to! Its good that you have found this site that is packed with information & advice & a shoulder to cry on at times if you need to. Our storys are very similar, my spleen was huge & I had lost a lot of weight as I couldn't eat...I thought the diet was working very well & didn't realize I was so ill! I was dx 2 years ago & am doing well with the treatment.  

You sound as if you are doing very well in all aspects, your positiveness will help you on your journey. The future is looking good for a cure.

Like you I am now on Dasatinib, having been on it for a week now following intolerance to the other TKI's.

I bet you have loads to do planning for your wedding in December. Have a great day!

Feel free to post  any queries you may have on this fantastic site, we are a friendly bunch!

Wishing you all the best.

Ali

Glad to hear you're response is good and that your Consultant is happy with you...might be worth a dental check-up to hear what they say about your gums and I seem to remember that I was given an alternative to Corsadyl as long-term use can lead to staining.

 

I'm now on Dasatinib but was on Imatinib and suffered exactly the side-effects you've mentioned, as have also been experienced by many folk on here. Try not to get too tired hey?

 

All the best

Vickie

hi ali thank you for replying iam finding these sites very helpful.

like you i thought it was great that even though i was eating loads i was still loosing weight, great eh?!! little did i know that it would be this. hindsight is a wonderful thing!!

i had my week in hospital when i felt sorry for myself and asked the usual why me? questions but now ive adopted an attitude where i think '' stuff this, im young and due to get married, there is no way im going to let this get the better of me! i have a fantastic support network, and the now the added support from you guys.

i still have quite a lot to sort out with the wedding but i will get there!

take care and i will speak soon.

alison. xx

Hi Alison.

Sorry to hear you have joined our club.

the good news is the future for us CML'S is looking better each day.

I was diagnosed last March at Wigan hospital as a result of a routine blood test.

And began treatment with Hydroxyurea to fetch my wbc down then i went on to Glivec therapy.

15 months down the line things are looking good i have responded well to treatment and things are as good as they get.:)

Initially things were a little scary the worst thing was not knowing whats going on and then all the erratic fears that manifested once you heard the word Leukemia.

in some ways i feel very lucky to have been diagnosed.

It made me appreciate things all that much more the most insignificant things in life have now become really important.

The best way of describing it, is that it was like i have been walking around with blinkers on all my life. Then for the first time i have taken them of can see clearly now.

The things that i was going to do tomorrow that never got done were finally finished,the things i wanted to do are now on the agenda.

i had been putting of getting married for years, now i am due to be wed in october this year.

if you ever need to speak to someone you can email me at stu.j@tiscali.co.uk

or if you want to speak then i will give you my number.

till then.

good luck with the treament and keep your chin up.

 

Stuart.

 

hi stuart thank you for your reply.

yes im a member of a club nobody wants to join, ha ha!  i can say that everyday i feel more positive about things and the more stories i read the more hope you get.  as i was told in hospital, ''if there is one leukeamia to have then its this one''.  at the time i thought you crazy man what you on about??!!!!  but now i kind of understand and agree what he was saying!

your story is very similar to mine apart from im on dasatinib. my wbc was 350 and now its down to 4.3 going tomorrow again for bloods.

are you from wigan? im not that far away from there, im from cumbria, a town called barrow in furness do you know it?

congratulations on you getting married by the way!!!! and guess what, im getting wed in dec this year too!!!!!

i hope we can stay in touch

take care

alison.xx

Thanks Vickie.

As for tiredness, I can happily say that my energy is coming back to me, and dozing on arriving home from work is a thing of the past.

Up until recently, I found it hard to concentrate at work, but now this is clearing also as my energy returns.

 

Dental issues are something I've raised with my Consultant, as 8 years ago I had the first phase of some major Maxillo-Facial work done as an NHS Category V case.  After 6 months of discomfort, following surgery, I couldn't face [pardon the pun] getting the next phase done [which would involve dental implants], however I'm ready to resume this treatment now and my Consultant tells me he can set the wheels in motion once again for me.  On that basis, I'll be discussing the issue of mouthwash with the Max-Fax specialist I hope to see once my first 3 months of treatment are up.

David.