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How to get a haematologist to listen?

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Hello everyone

I trust everyone is doing well and things are all under control!  This is a bit of a strange post, but maybe someone can share some advice on an issue that I think we all encounter from time to time - that is, how to get a haematologist to listen to us and not to dismiss our research as a Google search by an uninformed patient.

For example, there is a great deal of evidence (championed here by scuba) that lower doses of dasatinib are effective and there are several scholarly articles that prove this.  Yet, many of us find it impossible to get our doctors to even think of putting us on a lower dose, especially if the side effects we live with aren't deemed harmful.  However, these side effects could perhaps be reduced if we were able to go on 50mg or even 70mg, and there is enough evidence that this may work.  

I fully understand that my Google search is not to be confused with my doctor's medical degree, and I defer to the knowledge of the experts.  I also fully understand that there is a great deal of nonsense and quackery on the web (here I'm thinking of a friend who is hell-bent on selling me anti-candida treatments and urging me to come off the imatinib).  At the same time, though, many of our doctors are not specifically CML experts (like Dr Druker and Dr Cortes), and our condition is simply one of a very diverse range of illnesses and conditions that they treat.  Also, our condition is so very well controlled with the medication, in most cases, that there is no real need for busy specialists to spend time reading articles that provide a very small benefit, whereas there are several other serious conditions that (rightly) command their attention.  So it is understandable that not all doctors have read the latest research - it affects us as patients directly, but is only a small part of the extremely important work that these haematologists do (I'm thinking, for example, of the over 40 different types of lymphoma that these professionals have to diagnose and treat on a daily basis).

Anyway, the purpose of this thread is to ask how to go about bringing significant and relevant research to the attention of the haematologist without (1) intruding on their time and (2) appearing to "know better" (which is certainly not the case).  It is so important to maintain respect and trust between the doctor and patient, and I would never dream of superseding the authority of my doctor.  The point is simply that, if better options exist, one might be able to try them to everyone's benefit (I'm thinking here of the enormous saving to the economy if most patients could be put on 50 or 20mg dasatinib).

Any thoughts would be welcome!

Best wishes from South Africa, where spring is in the air!

Martin

Hi Martin

I am sorry your haem doesn't listen or take on board your queries regarding dosage. I am lucky in that I have a very co-operative haem with whom I have a partnership type of relationship. I do the research ( with the help of this site and others) and I email my haem the link. He always responds so I know he reads the info despite an enormous workload/patient list. eg the trial about to open in Versailles regarding the combo of TKI + a diabetes drug ( published in Blood Journal) in which he is very interested. I am always careful to check sources - Nature or Blood.

I wonder if you could get this sort of relationship with your consultant? We have more time to research latest CML developments/trials than the medics do. It is indeed true that our consultants are extremely busy with patients who are very ill - I have gone across to phone appts with mine after bloods are taken at my local GP surgery. This saves both of us time, but he always asks if I would prefer a face to face consultation.

Mine was also happy when I suggested reducing dose ( for one year I have reduced to 300mgs imatinib) and I know he will be interested if I ask to reduce further or stop meds in the future.

Is there any chance you could change haems and get one more open to discussion?

Good luck

regards

Chrissie

Hi Martin,

I am sorry to hear you are having a hard time trying to get your doctor to listen. When I was first (officially) diagnosed back in Jan 1999 I was very fortunate to be under the care of Prof John Goldman at Hammersmith Hospital (Imperial College) London. He was a giant of the haematology world and before his untimely death a few years ago, he was a mentor to many of the CML clinicians that we know today - including Brian Druker. At that time the phase 1 trials for imatinib were already open in the US. Unfortunately, the plan for me was straight to SCT - it was the only option and I was lucky that my younger brother was an HLA match.

However, I had just joined the CML listserve published by ACOR.org and was given some information by a member on there whose wife was enrolled on the phase 1 trial in Portland OR. The information that he shared with me would change the course of my life.

Prof. Goldman had not mentioned the trials to me - why would he, I was obviously quite a way along the disease path and was entering AP with 5% blasts in peripheral blood and an enormously enlarged spleen - and anyway I was in the UK.

Nevertheless, I printed off the information I had been given and took this to my next appointment. I was scared, to say the least, in case Prof Goldman accused me of not understanding anything (he would have been correct) and/or would refuse to discuss the option of my going to the US to join the upcoming phase ll trial for AP/BP CML.

Happily, I was wrong to be so worried and he just asked me 'where on earth' I had got that information from, to which I said 'an internet group'. It was early days for the internet, but this is the backstory of CML and TKI therapy and where we find ourselves today because the internet allowed real patients to share with and advise others- it wasn't 'google'.

Prof. Goldman was respectful of this and thought that I should be given the chance to try an alternative to SCT (he had been involved in some of the earlier research, admired and worked closely with Druker). He was sympathetic and said that if I could get on one of the trials then he would support my traveling to the US.

Looking back now, I think he had little confidence that I would survive a transplant, given my disease was so extensive and the pre-conditioning therapy (sic) drugs required would be at such a level they would probably kill me along with my PH+ cells. But that aside, I think he thought  that if I was willing to take the risk he should at least respect my right to choose that path.

Not all clinicians are so forward-looking/respectful of patients and their right to make informed choices. Things worked out for me and I am still impressed by the Hammersmith team's respect for their patients who keep up to date with current research and educate themselves about CML and the best ways to manage their disease. 

All I can advise you to do is to keep on trying to get him to listen... keep showing him the research (hard copies work well) and talking about how this is not something you dreamt up by yourself but is backed up by the work of his contemporaries.

We are very fortunate in the UK to have a core group of CML specialist haematologists who are committed to finding the best way to treat and eventually 'cure' this disease. knowledgable Patients are not the enemy of these clinicians and they recognise that. Sometimes we have to be brave and not hide what we know no matter how tender the ego. 

I find your doctors attitude a little 'under the curve' so to speak! He could at least check with his international colleagues to make sure you are neither naive or mad!

You deserve respect and certainly deserve to be listened to. Maybe this will be a hard position for you to take, especially for someone who is trying hard to be respectful and polite in order to maintain a good relationship with your doctor, but then it is your life/quality of life, not his.

Sandy

Every few months when I go into my Cancer Clinic
to see my Onc and review my latest PCR results
I sit in the lobby and wait for my name to be called.
It’s a small clinic with 3 DRs and a lobby, and exam wing
with about 10 rooms and a infusion room with a dozen chairs.
The infusion room is always full of people taking Chemo drugs
directly into their arms.

The people in that room are mostly older and very sick.
Sometimes one of these folks will get out of their chair and walk with their
Chemo bag hanging off a wheeled pole and come into the lobby
where I am waiting and get a new magazine or just to walk around.
These folks are sick. Their cancer is serious. Not like me.
I take a pill a day. My numbers are good. I’m lucky.
My Doctor doesn’t need me to give him homework about my case.
I did my own homework. I get my PCR results before my appointment.
It all looks good, we make small talk. Sometimes he mentions his more serious
patients. He’s glad to see me. I am a success story for him. We like each other.

The clinic I go to is a cancer treatment center.
It’s not a Research lab. They follow the guidelines.
It’s in a town of 10k. It is a wealthy town. (I’m not), It is a first rate clinic.
When I suggested to my DR about lowering my dose a year ago he told me
several things. Imbedded in his response was , 'Corporate policy’.
Put another way, he is required to follow the NCCN guidelines.

I’m not!
We are on the front of the wave. We are the test pigeons.
We are up to date.
We are our own Doctors.

Martin, your Dr. hears you. He is not a researcher.
You are.

Romo

Martin -

1. You are in command of your body  - not your doctor.

2. You know most about how you feel - not your doctor.

3. You are surrounded by people (on this forum) who share your disease - not your doctor.

4. You research everything you can find on CML - not your doctor.

5. You will become more knowledgeable about CML, its treatment, progress and related - more than your doctor.

6. If your doctor can not "partner" with you - get a new doctor.

7. Ask your doctor how many CML patients he treats?

Think about the people on this forum - you know more people with CML than your doctor. Think about that.

Hi everyone

Thank you so much to you all for your detailed responses to my question.  You have all answered so openly and sincerely, and this has given me so much food for thought.  I will take much of what you have written on board.

Chrissie - I'm so pleased that you were able to get a dose reduction and that you have such a great relationship with your medical care team. 

Sandy - WOW.  Your story is inspirational and I am amazed at how the pieces of the puzzle came together and ensure that you have managed to make such a good recovery!  I really appreciate the suggestion of hard copies and I may print out some of the latest research.  You are living proof that we are sometimes our own best advocates and I can't believe how, in a time when the internet was still in its infancy, you were able to come across this life-changing information.

Romo - I experience much the same when I go to my appointments and see these poor people living with serious, serious conditions that make them feel very sick.  We often forget how lucky we are to have something that doesn't affect us THAT badly and it is a sobering thought.

Scuba - your reply gave me a completely new take on this, especially when you make the point that we probably have contact with MANY more people who have CML than our doctors do!  Such food for thought.  Thank you again.