My husband Darren was dx with CML 18 months ago. He started hydroxia (sp??) for a few weeks to bring down his while cell count that was 417. Since then he was on Gleevec 400mg a day and was doing ok. However he went for appointment and we have been told his BCR has jumped right up and he is back to where they were in Aug last year :(
He has been referred to the Hammersmith and they have started him on 600mg of Gleevec in the meantime. Of course we are a little worried especially as the local team he was under seem usless and never had a good handle on this. He hasnt had a BMB since Oct last year and very first set of BCR's were lost! Also Darren had all the signs of being further along than Chronic stage with bruisng, weightlose, nightsweats, infections and extreme tireness. He also had enlarged liver and spleen to the point you could see it poking out! How do they decide on stages?
Who's best to see at Hammersmith? Do they run on time? We have 2 little girls at home and we need to plan for somoene to watch them when we make the trip, so be nice to know how long.
Thanks in advance
Lisa
You are here
Hoping someone can help 18 months on and BCR has jumped up
Dear Lisa, sorry to hear about your husband but try not to worry too much. It is very good that he is being seen at the Hammersmith as it is a center of excellence for treating cml. It may bee that the increased dose brings his counts back down or maybe they will switch his drugs to one of the other TKI's which in some cases bring on a better response. Rest assured that he will be treated at one of the best hospitals. The symptoms you have described were exactly the same as mine and I expect many others too. In my case they thought I had cml for about 6 months, but I don't know how they know that! At my recent appointment at the Hammersmith I was told to expect to be there for 3 hours or so as they may have needed to carry out certain test. It could be a long wait & don't expect them to run on time. Each patient gets as long a time with a consultant as they need and sometimes there may well be running late.
All the best and Let us know how you get on.
Thanks its good to know Hammersmith is going to be good :)
He had it for atleast a 12-18months as he had gone to GP on 4 seperate occassions for bruises that were bumpy, constant infection and finally non stop diahorra and tireness 
The double dose is making him feel quite sick which didnt happen with the 400mg very often.
What do they use to decide on stage? They list his first set of BCR and BMB so not sure how they could be sure.
Do yu know how long it would take for Hammersmith to see Darren?
Hi Lisa so pleased that Darren is going to a specialist hospital. Allow a goodly amount of time for that first appointment. Plus expect to feel exhusted at the end! All those questions (don't forget the note book and pencil)
If he has an increase side effects at 600mg Make sure Darren drinks lots of water with the tablets. Plus having them with some starchy food. I found this most helpful when on Gleevec.
Are you travelling by car? There is parking at the hospital round the back. The tube is a long walk away, but there is a bus service that links station to hospital.
Thinking of you both, let us know how the appointment goes. When is it?
Good luck
Pennie.
Hi Lisa,
My husband's care was transferred to Hammersmith a couple of years ago, and boy what a difference it has made. Being treated by specialists who have up to date knowledge of all the different treatment options has been a godsend, particularly when the response to Glivec is not working well.
From what I remember, once he was referred it all happened quite quickly - weeks rather than months.
It's likely that you will be seen by either David Marin or Jane Apperley, both of whom are in a whole different super league compared to the doctors that we were used to at the local hospital. They both have different styles so once you've been there a while you might want to request that you see one rather than the other. But I feel that I can trust both of them, and I also know that they have regular chats with each other about their patients to discuss options and how to proceed.
In terms of practicalities our typical visit is something like this: we arrive ten minutes before the appointment, usually one of the nurses then calls you up quite quickly for blood tests. You then sit around for a while - take a good book, visit the canteen to pass the time - until you are called to see one of the consultants, and by this time they have some of your basic blood test results back so can tell you striaght away about those. The chat with the consultant varies in time depending on how much you need to discuss. In the early days it was not uncommon for us to spend a good half hour or even 45 mins with the consultant. We never felt rushed, and they were patient enough to answer all our questions even when we asked the same thing twice. After the consultation it's usually off to the pharmacy to hand in a prescription, and sometimes another wait here if you need to collect drugs. All in all we are usually at the hospital for anything between 2-4 hours.
I hope that once you see them the treatment becomes much more effective. All those nasty side effects and worry are so tough to live with, but if it's of any source of comfort there are people here who know what that feels like.
All the best to both you and Darren.
Bhiru
Hi Lisa
In answer to your question re staging, this is determined based on the percentage of "blast" or immature cells in the bone marrow. (They will look at blood too and there's usually a correlation I think but not always so my understanding is that it is the marrow that determines it.) So, a bone marrow test is needed. Chronic stage is less than 10% blasts, accelerated 10-30 and blast crisis more than 30% blasts in the bone marrow. This isn't the same as white blood count or any other blood count per se number - you can't so far as I know deduce from the white cell count what the blast proportion might be.
The slight complexity in Darren's case is that if he's been on Glivec for some time, the percentage of blasts will likely have dropped from diagnosis (which is good). Without the original results they won't be able to say what stage he was in but they can say where he is now.
I fully endorse what Bhiru says about David Marin and Jane Apperley. They're both great, and in the world super league for CML. You will have a bit of waiting - but it is worth it and they will spend as much time with you as necessary. And the staff all round at the Catherine Lewis Centre at the Hammer are excellent.
Good luck
Richard
see thats where Im confused, how the doc here can tell us what phase he was at when they lost the bone marrow results!
Im so glad he is heading to Hammersmith, sounds like its a godsend and finally not treated like we are making a huge fuss. I remember one appointment the doc told us the BCR was down, and i asked what the numbers were and he slammed his fist on the table and got all huffy saying "this is good news you know"!! I was so shocked i nearly cried, and also rememeber early on being called to come and see him, insisting we both come so he could lecture us on how this is an easy ride compared to some and we need to get on with life and stop getting so worried.
Its nice to know there is support out there. I used to belong to the macmillian forum befor eit all changed and lost touch with the others.
We have 2 little girls aged 7years and 2years so least I know to get sitters and school pick up sorted. We will be training it down, as I hate driving in London even though we are only 20miles out of London here :)
How far a walk from train station is it??
I suspect even if they lost results there will be something in Darren's notes indicating stage at diagnosis which would have been recorded at the time. Ask HH to explain blood/marrow tests, cytogenics, FISH and PCR testing when you go - they're on the FAQs here too. These are test methods but none of them except the first measure blasts (sorry if that complicates things!) - the last three measure the level of the genetic fault we CMLers have, which involves a gene called BCR/ABL. So BCR and PCR are also different things: the first is measured by the second. However, if it's PCR results they've lost that doesn't matter too much - it would have been the original blood and marrow measurement of blast cells that determine stage: these do not equate to level of BCR by PCR (which can be as much as 100% in any stage).
Gosh - reading that seems to be complicating things. HH will happily explain and it's good to know as you'll have plenty of sets of results to look at going forward! What I would say is don't be too anxious just because Darren's white count was high and he had other signs/symptoms. people present differently in the same stage at diagnosis. And bottom line: they probably do have a note of stage at diagnosis.
You're not making a fuss and HH won't make you feel you are. How can anyone diagnosed with leukaemia be making a fuss? But do have faith as we have lots of options and they're good.
Hi Lisa, just a message to lend support to you..my story was extremely similar to Darren's except I couldn't access a Centre of Excellence, but do receive good care at my local. When my BCR failed to respond adequately and started to increase again at 18months, I was put on Dasatnib, have responded very well to that and don't suffer th sickness/diarrhoea experienced whilst on Glivec. I'm not expecting to ever be in that elusive "zero club", but so long as the levels don't go back up again, then I'm happy with the response.
Like Darren, my spleen was fit to burst, bruises the size of dinner plates and a complete inability to cope from exhaustion. and endless chest infections...pneumonia, pleurisy.. I do feel that the delay in diagnosis is behind my slow response. My GP gave me anti-depressants and I was told that the bruising was what can happen to a lady of my age!!
|Life will settle down again once you've got through this bit and you feel the security of being under the wing of HH. Leukaemia Care do run a 24hour support phone lin, which I'll look out for you for those times when you just need to talk to someone about how you feel. They are there to lend support to not only the patient, but the family as well.
Keep in touch...good luck...
xx
Hey, sorry for any thread drift but this was the closest one to my situation
I am Swede living in San Diego, but came across this site as quite useful. I got engaged to an American girl a few months ago, she had CML in the chronic stage but was eating Gleevec. I had the best time of my life, but the luck didn't last long. A few weeks later her CML had progressed into the accelerated phase, followed by blast crisis only a week later.
She has been admitted to UCSD Medical Center, a research hospital, for 1,5 months now. Today I was informed the first round of chemotherapy/radiation failed to take her back to chronic stage. She is 28, has a related donor (her brother) for SCT and is a fighter!!! But as far as I've understood, for a successful SCT she better be back in the chronic stage.
The doctors are now going to discuss how to proceed with the treatment. Is there any chance different kinds of chemotherapy will have better effects? She still has blasts in her bone marrow. Basophils seem to take up a big space. Her spleen has reduced in size though. I think the doctors considering another round of chemo or going for the transplant right away.
You try to be strong, but today has been very tough. I hope she wasn't given her "death sentence" today. Has anyone experienced something similar and is it possible to recover from the disease at this stage?
Love to you all!
Hello Patrik,
I am sorry to hear of the problems that your fiance is having. It is so difficult to advise you but she is in an expert centre and that is something to be glad about. You are right about having a better chance of a successful SCT if in chronic phase before the transplant. However, with some further chemotherapy (you say she is strong and a fighter) they might be able to reduce the leukaemic load further.
The fact that she still has blasts evident in her marrow after the conditioning chemo/radiation is a worry but she has a sibling donor and this is fortunate. From what you say her doctors are on the case- however, have you asked them if they have considered using one of the other TKI's as well as further chemo?
Depending on the reasons why her disease progressed when she was being treated with imatinib (Gleevec) it might be that her blast cells would respond to either nilotinib or dasatinib- ? A significant number of blast stage patients have responded very well to dasatinib in particular... not maybe over the long term but certainly over the short term. I think dasatinib is quite effective in blast stage. Would this be a possibility?
You could also contact Brian Druker at OHSU who is pretty much at the top of the chain for CML in the US. I will send you a contact email for his clinical nurse Carolyn Blasdel who I am sure would be able to advise you.
Blast stage is pretty hard to treat- but she has a donor and therefore a fighting chance- especially if they can get the blast cells down further with either a TKI alone or in combo with further chemotherapy.
I hope this is of some help
Sandy