hi everyone, my dad told me today that 3 months ago his gp told him he had cml, recently he went to see a heamatologist who confirmed the diagnosis, what i'm having a difficult time understanding is that the dr he seen at the hospital told him not to worry and he would see him again in six months, how can this be, surely if it in the very early stages it would be better to start treating straight away than leaving for six months, also all he had were blood tests, online it says other tests would be done, either that or he's just telling me alls ok cause he thinks i won't worry rather than telling me the truth. Sorry for going on i'm just confused and need to understand, has anyone experienced anything like this.
You are here
i really need some help understanding this.
Hi Nikks,
Firstly I'm sorry to hear of your dad's diagnosis. It is always a shock for everyone involved and it's good to see that you are already taking a practical approach by trying to find out more about CML.
I am by no means an expert on this, having been diagnosed myself about 8 months ago, but I have certainly picked up that what you are saying does not follow the normal course of things. It is not unusual for a GP to be unfamiliar with CML, the odds are many will never encounter it in their entire working lives. However, a haematologist should be familiar with it and should have forwarded your dad for treatment immediately on confirmed diagnosis. If treatment is commenced immediately in the chronic phase of this disease the chances are good that it will not progress and will be controlled. I am presuming that your dad is in chronic phase as most people are on diagnosis. If it is in accelerated or blast phase it is even more imperative that treatment is commenced immediately. Waiting is not really an option. The standard initial treatment is Glivec. As you have noted, diagnosis is normally based not just on blood tests, but also on a bone marrow biopsy so, if your dad hasn't had the latter, he should push for one straight away.
Perhaps you need to find out if your dad is trying to protect you by not telling you everything. If he has told you everything and he has not commenced treatment, he should ask his GP to refer him immediately to one of the CML centres of excellence. Which one he goes for will depend on where he lives. The 2 main ones in London are Hammersmith Hospital and Kings College Hospital.
This site is an excellent place to find out about CML, its diagnosis and treatment, as well as for getting support from other patients and carers. You may wish to refer your dad to it (if he's on the internet), firstly to find out more for himself, and secondly to show him what you have found out so he will know that he can discuss this with you from a level of understanding!
I wish you all the best with supporting your dad through this and hope that he is soon on his way to getting his life back to normal.
Cathy
Hi Nikks,
Everybody reacts differently told their DX. Many people walk around with it unaware that they have.
I only new because I lost 2 stone and felt like I had constant indigestion and had an enlarged spleen
Blood tests followed by a bone marrow biopsy are the correct way to dx this condition. A BMB will look and about 25 cells and then it will follow on from there.
Six months is to long to wait and should be seen at one of the center of excellence like the Hammersmith, Kings both in London, others are in Newcastle, Birmingham, Edinburgh, Liverpool Bristol to name but a few.
I was seen originally at Watford and was there 6 ever CML patient so was somewhat of a guinea pig for them. At first I was joint care with Watford and Hammersmith now sole care only at the Hammersmith.
I would have thought that your dad should be on Glivec (Imatinab) which is the first line of treatment in the UK> Your dad should speak to his consultant and be referred on and not wait six months.
For some people it is not easy to discuss these problems with others but here at this forum if you wish you can ask any type of question , anonymously if you like and you will get an answer.
Good luck
Steven D
You are right to be worried that your dad has not been immediately put on TKI therapy..i.e Glivec (imatinib). To be told to come back in 6 monthsnot the standard of care he should expect... it is very hard to believe that a haematologist would do this as 400mg daily of Glivec is the front line therapy for chronic stage CML... no matter where you are in the UK!
Your must get your dad to focus and tell you the truth and if he has been given treatment with Glivec. You might be right that he is trying to protect you from worrying but already you are now more worried than you should be...so he has not succeeded in protecting you or pretending that everything is OK! CML is not a disease that should be left without treatment. If he has not been given treatment then he needs to see another haematologist asap pref. at one of the major centres for CML. Please let us know where your dad lives in the UK so we can recommend a centre of excellence near to your dad.
It is good that you have done your research... ;o)
If you need further advice do not hesitate to ask here.
Sandy
Glasgow is undoubtedly the best CML centre in Scotland (i'm in Edinburgh) - Tessa Holyoake and her team are very highly regarded so he should be seeing them - best of luck getting to the bottom of this.
Annie
Hi, It is always a terrible shock to be told that someone close has leukaemia. My daughter then aged 13 was diagnosed with CML in Sept '09. I can honestly say the care she receives in Yorkhill hospital is excellent and that they work closely with the Beatson in Glasgow. There is a consultant there with a special interest in CML ( as there is at Yorkhill ). If your dad is refered there he will get the best care possible. Good luck to you
I'd second all the comments above that if he does have CML then he should a) start Glivec immediately and b) change to a competent haemetologist. One thought though - is it possible that your dad has got the type of leukaemia wrong? There are some leukaemias where the standard treatment is to 'Watch and Wait' and if he actually has one of those and he just didn't catch the name properly then it is possible that his current haemetologist is behaving sensibly rather than being dangerously incompetent.
Best wishes
Phil
If CML, definitely not "wait and see". However, if CMML (which is different) then the doctor's advice may be right - I have a relative with this condition and that person is not being treated but is being watched. So you do need to know which he has been diagnosed with for sure. Those of us with CML were diagnose by BMB and in recent years, subject to clinical trials, the default position is to go straight onto Glivec without delay.
Best wishes also - we live in much better times for these things so be hopeful.
Richard