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Imatinib Resistance/Intolerance

Hey All,

Firstly I hope everyone has had a fun, healthy and event free christmas full of turkey and cheer.

My name is David. Im 34. Im a self employed landscaper. Im actually a member of the Yorkshire CML group but live in Heage, Belper. Firstly I would like to thank Sandy and Elisabeth and everyone involved in the site for a great job. Particularly everyone who contributes to the forums. I cant begin to express how much it has helped me coming on here. So where to start ? Instead of writing a long novel of a mail i think i will abbreviate where possible. This way i can cut to the point and you can all return to the Wizard of Oz and your turkey leftovers.

I was Diagnosed July 16th 2009 in late chronic phase. Had the usual symptoms. Enlarged spleen (Rugby ball), bruising, anemia, considerable weight loss etc etc. Platelets at 852. WBC 321. Bone Marrow Biopsy. Hydroxicarbimide to lower the WBC then randomised into the Imatinib 400mg group of the Spirit 2 trial.

Shut my business down for 6 months until i got to grips with things. Went to the gym every day and got my health and weight back to a point where i was comfortable going back to work. January 10 bought a house with my partner Lisa and spent 3 months renovating it. Then moved in and set my business back up. Have been working ever since. Was doing fine. Results were encouraging. Started getting mild bouts of depression/anxiety/panic attacks and insomnia after about 6 months. Came to a head at the beginning of August 10 when i practically shut down (anxiety/loss of confidence/panic attacks and suicidal tendancies). Went to the doctors and explained that i had never had any of these problems before and had infact accepted the disease and was doing well. I consider myself a confident, outgoing and strong person. Had never shed a tear or been overly upset by the cancer. Was taking it all in my stride. Mental health workers were sent to the house for an assessment (Its "A bout of severe depression") Prescribed Citalopram. Took two tablets and spent the next 36 hours rocking back and forth and sobbing like a baby. Had to be knocked out with Diazepam. Needless to say i havent taken any anti depressants since. Was having 3 monthly meetings at the time at Chesterfield royal. Bought all this up with my haematologist who made a note in my file. No explanation was given. Had another less severe bout 5 or 6 weeks ago (for no fathomable reason) and started researching the links between Imatinib and depression. Contacted the hospital with the information i found (enough) . A meeting was set up immediately and i was told to discontinue the Imatinib.

Was told on the 8th of December (by a different haematologist) that "In some cases these types of drugs do lead to depression etc". Unfortunately though (and aint this a bugger) the Imatinib has stopped working and they were going to contact me if i hadnt got in touch with them first. So i do consider myself both Intolerant and Resistant to Imatinib.

Have now been prescribed 100mg Dasatinib and goodness do i notice the difference. I didnt really realise how much the Imatinib had affected me for so long. I know a lot of people compare the effects of Imatinib to having a cloudy mind. I like to think of it as thick butter on toast if that makes sense.

Any hoo. Im getting on ok with the Dasatinib (3 weeks later). Although i dont even know if it is working properly yet. The side effects are mainly physical. Was very sick to begin with but am now only getting gut pains and smelly urine, aching (i imagine like being trampled by a horse), sore eyes, coughing, shortness of breath and nausea (All of them tolerable and in small amounts). Oh and headaches - bloody headaches. And damn if i dont feel strange of late. Im hoping all this will settle down over time. Soooooooooooo Heres where i need the help. Heres what i know.

I asked and they are classing what has happened as "Failure" and not "Suboptimal Response" in my case. The lab works out my results as a haematological and cytogenetic ratio (Dont ask me for a PCR) I was a 9% in May/June which is the lowest it had got after 10 or so months. In November i was at 60% despite continuing taking the Imatinib (nearly the same as when i was first diagnosed - 70%). My bloods are holding steady. Im still chronic phase.  There is no way at this stage to tell if it is the T315i gene mutation. Gene mutation samples have been taken and the results are due on the 5th of Jan. A meeting has been set up at Sheffield with transplant specialists (Which in a followup meeting on the 22nd they strongly suggested i should keep). I realise at this stage it is a precaution. I have asked all the applicable questions and done as much research as i can. So far i have covered everything from "Why the Imatinib may have stopped working"  to "My own cost effectiveness and life expectancy". Thank you NICE people. (Its 9.2 years and 280,619 by the way). My heads about ready to pop with all the science ive cramped up in there this Christmas. I know there are people out there who have had similar experiences and i realise a lot of the information available is purely speculative but any advice is welcomed. Should i just sit tight and cross my fingers ?

All the best

David

 

David Wow that sounds like mystory.

The shortness of breath and Dasatinib,I think you should go to hospital and get a chest X ray you might have fluid in your right hand lung a common side effect,if you have fluid the Dasatinib stops and your lung will dry out on its own,you consultant might restart dasatinib at a lower dose and increase to 100mg.(this happened to me)

I took my Dasatinib before bed,and after a couple months had no side effects,The transplant option is worth looking at as a back up plan,well worth having any siblings tested and see how close a unrelated match can be found.

As to the  who, what, and whys of Imatinib not worth the effort or the worry.

Hi David,

 

Merry Christmas, hope you had a good day x

 I really can't help much with your queries as I was only diagnosed on the 5th August this year and am still finding it all a bit confusing, the 'cloudy mind' comment struck a cord with me though as this is how I feel.

I mainly replied because I noticed you said you lived in Heage, I live in Ripley so you could be my closest CML 'neighbor' LOL

You mentioned Chesterfield, is that the hospital you are under, why is that? I am with the Royal Derby with someone called Joanna Addada.

When and where is the Yorkshire support group? is that the nearest to us? I've been thinking I'd quite like to go to a support group, would be nice to chat to others. I was told that I am young, at 38, to have cml yet allot of people I speak to seem to fall into my age range so I wonder if that's true.

Anyway, I hope the Dasatinib works better for you, I am on 400mg Glivec which hopefully is working but as they forgot to send my last bone marrow biopsy off for testing I'm not sure if they know or not but they say it is.

Take care

 

Jackie

Hey Jackie,

Thank you for your reply and howdy neighbour. Hope you had a good christmas. I am a patient at Chesterfield Royal as i recently moved from Matlock to Heage. I decided to stay on there mainly as i had built up a relationship with the doctors and wanted to keep continuity of care. I think a lot of people suffer from the 'cloudy mind' bit with Imatinib at one time or another. Its all over the forums in one form or another. The Yorkshire CML support group has a website. I have only been to one group meeting as its quite a way to travel to Leeds. I do intend to go again. I did recieve some information from a group in Nottingham earlier this year. If its still running it would be the nearest. I know of four or five people younger than myself with CML. It isnt that common. Hope all works out for you.

David

Hey Michael,

Thanks for the reply. The shortness of breath isnt that serious to be honest. Just something ive noticed among the other side effects. Im not yet crawling round on my hands and knees. I did think morbidly i may have an elevated white blood count but apparently the bloods are stable. They have asked me to contact my sister for tissue typing but as i havent had my own tissue type or mutation tests through yet i have decided to wait and not cause any unnecessary worry. The whos, whats and whys are the important bit though. Apparently each TKI has a resistance profile. If and what gene mutation i have and why the Imatinib stopped working may determine the best cause of action. It certainly determines if they have me on the right TKI. And speed is of the essance as far as i can gather. I read that "Patients with a Major Molecular Response at 12 months had significantly improved long term outcomes as compared with patients with no Major Molecular Response at 2 years or beyond" Sounds serious Huh.

Dave

http://cmlyorkshire.webs.com/

I remember reading the same article,In my case being diabetic cut down the options on TKIs,I go to Kings in london for my treatment,they tissued typed me and did a mutation test from blood taken on the first visit.You sister has a 25% chance of a match all thats required is a small amount of blood,worth doing it just to create a detailed treatment option plan.

Treatment has leaped ahead for CML in the last ten years and the outlook has never been better.

Thanks for the link David. x

Jackie

Hi all,

Can anyone help ?

I first posted on the Yorkshire CML site before christmas when i found out the Imatinib wasnt working. As its only a small group  (and maybe because its christmas) i only recieved a couple of replys. So i waited patiently. Over 20 days. Nothing. Infact, the last three posts are from me.

Maybe its because i approached this in a perky and upbeat manner. A bit understated ? Not enough urgency.

Its been a horrible year. And a crappy 17 months. But we are dealing with things. We've carried on to the best of our ability and with a degree of normality. I made a decision quite early on that i was going to get back to normal as soon as possible. To fight. You keep going or you give up. It really comes down to that !!! I think in retrospect i should have given myself a bit more time. It hasnt helped being a Landscaper. The hot summer. The cold winter. The wet and cold. The dust and heavy lifting.  Its all been extremely difficult. Unfortunately this is the only thing i know. I think now its a matter of 'when' and not 'if' i look for a change in career.

So im now in new territory as far as the CML is concerned. The goalposts keep shifting and its exhausting trying to keep up. No continuity. Without trying to be too dramatic "Im in the shit here". Ive come to a dead end as far as my own research goes. All i have now is too much time and my own thoughts. Im driving myself crazy. Sooooooooo

Has anyone had only a partial Cytogenetic Response  by 12 months followed by Imatinib failure and an worrying increase in their BCR/ABL levels ? Is there really nobody out there who has been in this situation (or similar) and can offer advice ? Even if that advice is "Hope for the best".

I hope this mail doesnt come across as curt or rude. That really isnt my intention. Im just wound up. Been ill all over Christmas and stuck in the house.  I think ive sicked up the Dasatinib two nights running now which is a worry.

6 days to results.

David

Hi David    I was on Imatinib from early Feb 2002 One of the first in UK.  Didn't get a good response really, lowish PCRs but no zero until one perhaps false result in 2005.  Terrible side effects, but I kept on keeping on.

Switched to Tasigna 2 years ago, again one of the early ones !   Low PCRs now, not zero but hovering around the 0.1 level.

So here I am 10 Christmases on, without that much sort after Zero, but doing well on lower than recommended Tasigna.  Still some side effects, mainly with blood sugar and cholesterol levels, known side effects of Tasigna. So the other TKIs have potential to work when Gleevec hasn't.  I find Tasigna a breeze in comparision to Gleevec. The regime needs a bit of getting used to, but thats OK now.

Have your hospital suggested Tasigna? It might be worth a try.  Also have you had the full mutations testing done?  Depends on which hospital you attend I think as to how these are done, you might have to go to a centre of excellence for the more complex testing.

Good luck, keep on going through the dark days, and I really hope you find some answers soon.

P 

Hi Pennie,

Thank you for your reply. Really appreciate how quickly you got back to me. Just talking helps. This is my way of accepting what is happening at the moment. Finding out as much as i can and then discussing it. If i wasnt driving myself nuts researching it i may have slipped into self pity or depression by now. Driving myself nuts is the prefered option. 

I think Nilotinib wasnt really an option as its just  Novartis's improved version of Imatinib. The drugs share many similarities.  As i understand it the first course of action would have been upping the dosage of Imatinib from 400mg to 600mg. In my case even at the lower dosage i was suffering horrible side effects. My quality of life was at times none existant. Infrequently i was hopeless and suicidal. Always i was anxious and fragmented. An increased dosage was never an option.  So i think they looked at the two available TKIs and decided my best chance would be Dasatinib. Different company (Bristol,Meyers,Squibb). Slightly different TKI. I cant tell you how i feel at the moment on Dasatinib as ive been so sick over christmas and its hard to distinguish whats, what.

Im pretty sure now from my research i have some kind of mutation. I have a big old list of them next to me here. And yes i am waiting on Gene mutation results which are due on the 5th of Jan. An increased dosage of Imatinib would have overcome some of the moderately resistant gene mutations. Tasignia takes care of the majority. Dasatinib does for all but one of the highly resisatnt mutations (T315i). Please correct me anyone if i get anything wrong. Whats worrying is the fact that i never got close to Cytogenetic remission. Therefore taking into account everything i have read an event free progression is doubtful. Im looking long term at the moment. Trying to weigh my options before i go to that meeting on the 5th. I realise there are a number of drugs coming through (Ponatinb etc) that are showing good results. All things considered if im offered a transplant im going to take it. I dont want to juggle these drugs and what ifs for the next ten years. Being sick ,then well, then sick,then well.  Thats one of the hardest things to come to terms with, with leukemia. You cant just cut it out.

Thanks. Im really happy things have worked out (ish) for you Pennie.

Ive just had a friend get a BCR/ABL undetectable which is the best present this christmas. Here's to more in the new year,

=

Has anyone had only a partial Cytogenetic Response  by 12 months followed by Imatinib failure and an worrying increase in their BCR/ABL levels ? Is there really nobody out there who has been in this situation .

YES ME

Which is why I then went to Kings for my treatment,Started Dasatinib got  admitted to hospital in six days with most of the side effects of Dasatinib,Stopped taking Dasatinib for a week started at a 50mg then 7Omg and then 100mg then over many months to 140mg with no side effects.Got down to about 20%BCR/ABL and got stuck.

I had a unrelated BMT august this year and I am BCR/ABL undetectable bloods and marrow.

My advice is get your sister tested for tissue type as a related transplant is far better than a unrelated one,stop worrying and wait the six days for the test,CML is a chronic condition its long term and take each option as it comes.Get to the best CML clinic you can.I chose Kings,its a transplant centre,its a teaching hospital,Prof Mufti is a renown CML expert,Its a research centre involved in many trials.It has CML specialist nurses.

Hey Michael,

I have nothing else to do with my time. Bothering people on this forum and researching is a big distraction. Stops me being worried. So thanks. Wouldnt it make things easier on here if we had profiles. That way i could have read your story and known in advance what you had been through. Im sure i will have lots of questions if and when the circumstances demand it.

Unfortunately i havent spoken to my sister in 5 years. It could make that conversation a little awkward. I didnt feel the need to mention this before. Talking about CML clinics etc. Does anyone recieve their medical care at Sheffield ? Im told my care will be split between there and Chesterfield in the immediate future. 

So thats it is it. Cross my fingers. Bide my time. Be patient. Ive been told !!!

Thanks Michael

One of my brothers lives in Austrlia now getting him tissued typed was hard,another brother had been missing for ten years  and keeping low to the ground(CSA problem)turned up a month before my transplant at my home,had him tested the next day sadly no matchs. And yes the conversation asking your sister for a blood test can be awkward,but with a 25% chance of a match, it might not involve anything else.Better to know sooner than later.

Lots of BM donors in the USA,thats where my donor came from, researching is good,knowledge is power but consultants that deal with CML every day and have access to results will always be streets ahead of us.Lots of outdated information on the net about CML,Best of luck to you and I am sure you will be around for many years to come.

Cheers Michael. You are a star.

Hello David,

Really sorry to hear you are going through such turmoil at the moment, but I do hope when you read this, you will know that you are not alone and being able to tolerate Imatinib, Dasatinib and the other TKIs in helping to achieve a good PCR to control CML does not work for everyone.  For a long time, I felt as though I was the only person to fail these 'wonder drugs' and I couldn't understand why my body had to react so differently.

My husband, Brian and I live in Chesterfield. I too was diagnosed with CML in January 09. I was treated initially by Dr Collin and Haematology team at Chesterfield Royal (no complaints about the care and treatment here - they were all fantastic!). I was initially treated with Imatinib but it proved challenging because it affected my platelets and neutrophils, which meant treatment had to be interrupted and I required dose modification. During this 6 months I only achieved a minimal cytogenetic response (97% BCR-ABL at diagnosis to 94%).

From September 09, I then commenced on Dasatinib but, unfortunately, this had the same effect (dose reduction to  20mg per day) and interrupted treatment.  Despite the low dose, but after only 3 months, the BCR-ABL had reduced to 27%! We were thrilled, as you can imagine. It was the best Christmas present we could have been given but it wasnt to last - by the next bone marrow test (March 2010) it had increased to 44%. 

I have been extremely fortunate in having a Plan B, in that my brother (only sibling) had offered to be tissue tested early after my diagnosis.  The result from that was wonderfully reassuring, as he turned out to be a full tissue match; a rarity I know and it soon became clear to all that the TKI drugs were not made for me and the 'T' word started to crop up more frequently. Conversations had already been well underway between Chesterfield and Sheffield with Consultant Haematologist - Dr John Snowden and Dr Chris Dalley plus the CML expert at Sheffiled, Prof. Riley (although he was involved in my case, I didn't actually meet him face to face until one of the ward rounds as an inpatient on the Transplant Ward). 

I had my first appointment at the Hallamshire in September 09. We were given all the facts and had lots of questions but this two-way dialogue (over 4 outpatient appointments in total) was so vital in helping us eventually decide (in June 2010) to opt for transplant.  The Royal Hallamshire is a Centre of Excellence and I cannot speak highly enough of the support, care and treatment I have, and continue to receive.

I actually had the stem cell transplant in August 2010 (reduced intensity conditioning regime, given my age). I was in isolation for 5 weeks on Ward P4 and I continue to visit the Day Ward weekly.  I have had a few blips with an infection, a need for a donor lymphocyte infusion in November and an itchy rash (most probably a dose of graft versus host disease, from which I have just returned home after spending Christmas on the ward).  I still have a very long way to go but know I'm in very good hands and put my trust in the experts. I remain hopeful that the transplant will provide me with the aimed-for long-term cure and good quality of life. 

I, for one, cannot speak highly enough of the support, care and treatment I have, and continue to receive from all the Transplant team at the Hallamshire.  The Nursing care is second to none but the most important thing is to stay as positive as you can be and to take each step at a time.

We have attended one of the Yorkshire CML Support group meetings and a couple of the East Midlands CML Group meetings, where we were fortunate to meet a woman who had had a transplant about 10 years ago and was doing well.  The group is now included on the Leukaemia Care website  (www.leukaemiacare.org.uk) and the local contact for the group is Shahnaz Hama, Nurse Specialist at Nottingham City 

My thoughts and prayers will be with you as you continue into 2011 on your CML journey. Don't hesitate to get in touch if you require any more information.

Alyson.

Hey Alyson,

Thank you so much for spending the time to write an extremely informative and helpful post. Especially regarding Sheffield and what to expect. Both myself and my family found great comfort in your story. I am constantly amazed of late by the strength and generosity of the people i talk to. You are inspiring. Ive been asked to pass on everyones best wishes for a speedy and event free recovery. xxx (and a couple of kisses from me)

This month over Christmas has been agonising. Waiting and not knowing with too much time on our hands. The 5th cant come soon enough. I will post on this thread to let everyone know how things have gone.

Thank you again.

David

Hello David,

Brian and I will be thinking of you and your family as you go into this challenging New Year.  We will particularly be holding you in our thoughts and prayers when you have your first consultation at Sheffield on Wednesday 5th.  I am back at the Day ward (O Floor) tomorrow for my usual weekly bloods and review.  I'm sure our paths will cross at some point from now on. 

We have chatted to other patients post transplant on our visits to the Day ward but we all have our own unique experience and I have realised that all the different leukaemia and lymphoma diseases come with their own prognosis and treatment.  Some folk are able to have their own stem cells transplanted whilst others have had matched unrelated donors.  Up until a few weeks ago I hadn't bumped into anyone else with CML, but amazingly whilst in hospital over the Christmas period, I shared the same room with 3 other ladies and one of them, Jill, was a fellow CMLr.  She has written a super article for Leukaemia Care magazine.  Please click on here and you should still be able to access the Autumn 2010 edition and read her story so far.  Unfortunately things haven't gone quite as smoothly for her since then (her disease progressed to Acute and then Blast Crisis so she is now having an up hill battle to be made well and strong enough to re-start her transplant.  We are keeping in touch now that we have found each other and I will be popping up to P Floor to see how things are progressing. 

  www.leukaemiacare.org.uk

Bye for now,

Alyson.

 

  

Hello to all,

Just got back from the hospital. The gene mutation tests show i have none of the major mutations. Which is a relief. Unfortunately we still dont (and may never) know why the Imatinib stopped working. I have been told it may be a mutation just not one of the ones they test for. Or it may be something else. They just dont know. So i continue with the Dasatinib until my transplant meeting. Hopefully by that stage they will know more.

I wont have an up to date PCR until i have been on the Dasatinib for 2-3 months. I thought my results may be of interest so here are my PCRs from diagnosis. Make of them what you will. They are worked out as a ratio calculated from a baseline percentage which i believe was % 211. Does that make any sense ?


Months           PCR

0.3                 70.365

3.7                 34.478

4.4                 54.76

6.5                 11.55

9.7                  9.9

12                  13.6

16 (Nov 10)      60.46

Hoping all are well

David

Hey Alyson,

Ive had my transplant meeting through for the Royal Hallamshire. It will be at 12pm on the 25th of January. Medical Outpatients Floor A with Dr Dalley and Dr Snowden. Thanks again for the heads up.

Did you ever find out why the Dasatinib stopped working for you ? From the looks of things after a positive start you had a secondary resistance. Were you offered any reason ? I only mention this because there seems to be a trend of people who fail on Imatinib. Get placed on Dasatinib. To begin with their results appear encouraging but after 3 or 4 months they end up failing or coming to a standstill. I bought this up with my haematologist on Wednesday and he agreed. I believe this is why im being sent to Sheffield. To preempt any problems. Id like to know what you think.

David

Hi Alyson

I too will be following your progress. My husband Alastair was diagnosed in Sept 06 and put on Glivec. Responded well but after a few years they changed him to Dasatinib. Just before Christmas his blood counts were not good and after several transfusions the consultants decided the only way to go now is a transplant. We live in N.Ireland. Just waiting on a donor. The transplant will be carried out in Dublin as it will be a non-related donor.

I'm so relieved you are doing so well. Alastair is very worried as expected but positive stories really keep is going

Take care,

Moira

Hello fellow CMLers,

I thought i would update everyone on my progress.

I had a meeting with Dr Dalley at the Royal Hallamshire Hospital on Tuesday and was offered a transplant.  After listening to the in's and out's of the procedure i dont think i would willingly choose to have one until it was absolutely necessary. I have the deepest respect for anyone who has had a transplant or has even had to consider having one. It scared the crap out of me. I left the appointment feeling numb. Dizzy and disorientated. "Is this really what its come to?"  "Is this really  happening?" So for the moment it will remain an option. I have a follow up meeting in a month. This should give me enough time to absorb the reading material and consider fully what was discussed. But for the moment no. I not only have to consider myself, but the inconvenience and strain it would put on my family. So no thanks. No, no, no !!!!!! Not yet !!

Dr Dalley did bring up something that got me thinking. And please correct me if my logic is skewed.

When i failed Imatinib i was tested for the main mutations. Negative. On Tuesday he explained the cells and the receptor that the TKI binds to have not changed shape. If it had altered shape we could almost definately say I have a mutation. So....after you've eliminated mutations as a reason why TKI's stop working theres a big hole where the information should be.  There is no explanation (at least i havent been offered one) for TKI resistance. Some people just fail. My haematologist and i have discussed  before and i have read in case studies that "People that fail on Imatinib (in this manner) often go on to fail or have suboptimal response with Dasatinib". So at the moment they are (as far as im concerned) throwing the kitchen sink (Dasatinib) at it. And though it may work, its not much comfort.  Having a blank space where the answers should be.

As you will be aware you not only have to treat the disease but maintain some sort of quality of life. The last 18 months have been tough. Ive had terrible side effects with Imatinib which may very well resurface with Dasatinib. Ive got no where near molecular remission. Now I have to try and move on knowing that in 6 months they may turn round and say "MMMMMMMmmmm Mr Ball unfortunately the Dastinib has stopped working, lets have a look at Nilotinib" then 6 months after that "MMMMMmmmmmm Mr Ball Nilotinib has stopped working lets have a look at Lobotinib or Ronotinib etc etc"
I dont think i could live like that ? The last 18 months I have thought of myself as a sandcastle on a beach. Every time a wave laps up on the shore it drags a little more of me out to sea. But hey, im still here fighting.

I have to be patient and sit it out. Im not ready for the other option just yet.

Hoping all are doing well and wishing the best to all.

David (Frustrated)

Hi David

Sorry to hear everything you are going through, sounds like a really rough time. I was on Glivec for 8 months and then ended up in hospital as my liver was failing so came off that and went onto Dasatinib. Had the usual side effects but kept going and have been on it nearly 2 years but my results are now getting worse and it looks as though I may well end up having to try Nilotinib (which wasn't the first choice for me before due to the liver issues) and my consultant has also started talking about interferon so i know how you are feeling. I agree that transplants are the last ditch option so try with the Dasatinib and hopefully it will work for you and you will get that number from Zavie!

K

Hey David,

Really sympathsise with your frustration. I'm also self-employed and maybe understand the crunch you feel (quality of life, working, fighting the disease).

Like you TKIs produce significant effects on my "cognitive function" as the doctors call it - fry my brain is how I put it. I had Imatinib until resistance developed as a result of a clonal evolution, then Dasatinib. It must be very frustrating to have resistance develop and they can't find out why.

I took the decision to have a transplant even though Dasatinib had reduced my PCR to undetectable. One of the reasons for going ahead was the effect of the Dasatinib - basically I couldn't work while I was taking it. Even so I was really scared I'd be screwed up after the operation. As it turned out there were some complications, but I have had a wonderful year without drugs back to fully active life - even cycled 700kms through the Alps in 6 days last summer. That was one year being able to share fully in the life of the family, work  etc..

In fact that could have been the end of the story for me, as far as CML is concerned (I had zero PCRs for 18 months post BMT).

Bearing in mind this is very rare, I've been unlucky and the CML has managed to cling on and come back in no uncertain terms. So I'm back on the Dasatinib while we see what happens after a donor lymphocyte infusion I've been lucky to receive. This time, and it's early days, I'm on a heavier dose of Dasatinib than before, butseem to have stumbled on a routine and simple things in the diet that help make the side effects more bearable.

At one stage I was thinking of asking to be put on Nilotinib but,I realised that was another unkown and the compromise I've found, for now, on Dasatinib would possibly work longer term. Understanding the oncologist's approach a bit better now, I feel sure they'll want me to keep on taking it as long as possible, even if they decide in the next month or so the DLI has apparently worked.

Sandy posted on the home page a link to a thought provoking newspaper article about the situation, you might find a useful read - about living with a drug induced remission. I realise you don't know yet what the Dasatinib may achieve for you, but one possibility is long term remission. In my case I'm working on the hope coping with the side effects and seeing if that allows me to go back to work.

In case it sounds like I'm recommending one or other choice, I'm not! I do know I wouldn't change the choice I made to go ahead and have the transplant when I did.

Hope it goes well for you, happy to share any experiences that may help!

John

 

Hello all - I'm Davids girlfriend, Lisa and he has requested that I let you all know our current situation. On Friday night he was feeling unwell and this progressed into stomach pains. On Saturday morning i checked his lower abdomen and saw it was slightly swollen. The pain increased and we ended up at the hospital on Sunday morning. His haematologist came and requested a surgeon visit him. They suspected it was appendicitis (forgive the spelling). Having prodded and poked him they decided to go ahead with surgery and remove the appendix and also check his other organs (stomach, pancreas and kidneys). Apparently were all ok, even his appendix wasn't too inflamed but seeing as they were in there they took it out. What they did find was some white viscous fluid which they drained and have sent off for analysis. He is, at present, high on morphine and linked up to an IV drip, with a wound down the centre of his stomach (looks approx 6inches long?) with 2 drainage tubes either side. We are wondering if anyone can offer any advice on this as they do think that the Dasatinib has caused it (though we'll know more once reports are back). The doctors have said they have never seen this before and they have no idea at the minute (very reassuring - eh?). Thanks and any info received will be passed onto David. All the best to everyone, Lisa xx

Hi Lisa,

Sorry to hear that David is unwell, I can't really offer any advice but pass on our best wishes for a speedy recovery and I hope they get to the bottom of it all.

Keep us posted.

Jackie

Lisa

Sorry to hear about David's weekend.  I have no great insight I'm afraid as I have always been on Glivec.  Dasatinib is commonly associated with fluid build up but generally around the lungs (pleural effusion).  If you follow the blogs page of this site you should click on Jerry Mayfield - he runs a US based site for CML which has a specific page for Dasatinib (known as Sprycel on his site).  I think you should re-post there as I'm sure I remember that some of those taking Dasatinib have had fluid problems (including Jerry himself).  i really hope you get a relevant reply.

Best wishes

Annie

Thank you Annie - i have re-posted it on there - will let you know any further info once i get back from visiting him. All the best Lisa

Will do Jackie - I'm trying my best to keep him positive! Take care, Lisa x

Hello Lisa,

First of all, I hope David is feeling a bit better by the time you read this? I know everyone who reads your message will wish him better.

It's unfair, but David is getting the rough end of the stick at the moment.

It might help to make a note of what David is eating (when he's able to that is). A lot of people find what they eat can make a difference to the side effects of the treatment. Apart from some definite "no no's", each of us seems to find different things work for them.

For what it's worth, I find probiotic drinks taken with meals help me generally, lemon juice and honey in water and meals with meat in seem to reduce the side effects I get. Light meals and salads are a bit of a waste of time!

David's doctors will be trying to work out what the problem is and it's very frustrating when they don't have a ready answer. I can really sympathise with that, something "not seen before" happened after my transplant - in fact they were never sure what caused it - but I got better. I hope they find nothing suspicious in the samples they've taken.

Let's also hope David can come home quickly. Being at home can really help recovery.  Just a suggestion, if he has to keep taking it, think about what pain management works best for David. At one stage I was taking Tramadol tthe consultant prescribed it for me on request) to cope with the side effects of Dasatinib. I didn't like having to take it - it has it's own side effects (eat plenty of prunes), but it got me through until they decided I could reduce the dose (I was on 150mg). A useful thing with Tramadol is it doesn't prevent one taking other pain killers - for example if you get a headache as well.

This may not work for David, but, for me. it was about staying focused on what Dasatinib is for - if it is doing it's job, and the blood tests and PCR tests will tell you - that's a huge step forwards. The next question  was "what do I need to do to cope with the side effects"?

Hope some of this helps. Please do keep posting.

J

Hello to all,

Thank you as always to everyone who has shared their stories and offered their advice. As Lisa explained the operation which was originally for a suspected appendicitis took a rather nasty turn. I spent 8 days in hospital. The operation has left me with 24 staples up my belly and a 7 inch scar. The white viscous fluid that was removed from my stomach has been sent away for analysis. The surgeons that operated on me explained that they had never seen anything like this before. All we know at this stage is it was full of white blood cells. My haematologists have contacted Bristol, Meyers, Squibb the drug company that makes Dasatinib to try and get some answers. We have not heard anything back yet.

My haematologists have deemed it too dangerous to continue with Dasatinib which almost certainly caused this problem. I am currently at home. On Monday a district nurse will come and remove the staples. Tuesday sees us back at Sheffield Hallam for our second Bone Marrow Transplant Consultation. Wednesday i will go to Chesterfield Royal where i will start Nilotinib.

At the moment Lisa and i are weighing up our options. A clinical nurse specialist (who has been there from the start) came to see me while i was in hospital and explained she felt that sooner or later i was going to need a transplant. She had to repeat this a number of times so it would sink in. We are going to go to the transplant consultation on Tuesday and see what Dr Dalley suggests and will make our decision based on his advice. At the moment we are leaning towards the transplant.


All the best

David

Started transplant proceedings today. What else is there to say ?

Well I can suggest a few things...

Wishing you a good match.

You are worth every bit of the care and attention you will receive.

Wishing you a safe journey. Strength in the tough times, joy in the outcome.

J