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My 19 year old son recently diagnosed with CML

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After a nightmare of a journey my 19 year old son has been diagnosed with CML.  We are all trying to get our heads round this news - my son on the other hand is taking it mainly in his stride!!  We are now on a steep learning curving with him - he was started off on 400 mg a day of Imatinib but after a visit to our Haematology clinic it was discovered he was slightly aneamic and the dose has been reduced to 200 mg a day.  We are also waiting to go and see a Dr O'Brien at Newcastle who is a specialist in this disease to discuss my son's treatment.

On the whole our son seems to be coping with the medication the main side effect seems to be fatigue.  I am worried more about the mental side of all this - seemingly CML is very rare in teenagers and this is where the problem comes in - I would love if he could discuss this condition with someone in his age group that is going through it too.  Being thrown into this world of blood tests, etc, etc is such a big change for him and us - its scary as an adult never mind a young lad. Can anyone give us any advice if there is anywhere just for teenagers to chat about CML and how they are coping,etc??  Any help and encouragement would truly be much appreciated.

Oh and one last thing can anybody give me advice on the following:

How often are the blood tests when you are first diagnosed??

Is it possible to hold down a job with CML - do employers have an obligation to hold your job till you get back to being able to work

Is travel insurance very expensive (I ask this because we would now have been in New York celebrating my other son's 21st birthday) all totally irrelevant at the moment but Dr's have said we will be able to go in the future which eventually we think it would be a great goal to focus on for our son with CML cause he feels bad letting the family down as we had to cancel (we have told him we're not bothered he is more important).  Sorry I do go on a bit!!

 

Many thanks again!!

 

Hi. Sorry you're having to deal with this - a nightmare for a parent I'm sure, but you have arrived at a site with a lot of knowledge and good people who can help.

Firstly the development of TKI therapies like imatinib and others means that the vast majority of people with a CML diagnosis will not die of the condition; they will die with it, and there are good indications for those who respond well that life expectancy is not significantly impacted. Here's hoping that's the case for your son.

Prof O'Brien in Newcastle is a top man - he and most of the other leading clinicians in the country gave talks at the patient day in September. There are recordings of the talks on the link from the home page.

On testing etc., please use the "About CML" and Patient Info" tabs on the site. They have sections on test types, frequency etc. There is also a list of questions template to take with you to consultations. Write down the answers and get copies of the test results, and let us know what they say. There are few sets of results of tests for CML that someone on this forum hasn't been through before.

If you search on insurance in this forum you will find suggestions on companies who take a sensible view on this, once his condition is stable.

I was able to work full time since diagnosis 11 years ago at age 50. I gave one of two patient experience talks at the patient day - it is also on the link from the home page. I'm sure someone with experience of diagnosis in a young adult will respond soon. The Equality Act requires employers to make adjustments for people with a cancer diagnosis - they may need reminded about that. 

You and your son are now members of a club no-one wanted to join. It is however a good club and most people find it very helpful, and supportive. Take in the information in bite sized chunks, and if anything is keeping you awake - ask!

best wishes

Alastair

 

Hi there,

19 is young but even just a few years earlier could have made things more complicated. TKIs can cause problems like stunting growth in kids, but at 19 your young lad is an adult and though dealing with CML very early as an adult it’s better than dealing with it as a child.

Steve O’Brien is an excellent doctor and who my haematologist calls “Mr CML” so you are in excellent hands.

Fatigue is common. It’s particularly common in the early days not just for physical reasons, but just the mental side of it taking it out of you. You say he’s taking it in his stride, but even subconsciously it must be a weight on him.

Travel insurance can be more difficult to find, especially for US travel. But not impossible by any stretch and once his CML is under control he can get a policy which excludes CML treatment abroad (which he won’t need as it’s a fairly slow moving disease).

When first diagnosed, blood tests are done according to the needs of the patient. For me, it was twice a week then once a week after a while, then fortnightly ... etc. For others it’s much less frequent, depending on how early things were caught. 

When you see Steve O’Brien, talk to him about “shared care”. This is a way your son can be seen at his local hospital but with oversight and visits to Newcastle too when needed. 

Lastly, in some ways it’s not a bad thing that 400mg was causing him to be anaemic. It can be the case that the drug works “too well” and that a lower dose is more suitable for him, controls CML well and causes less side effects.

David.

Hi there scottishmum, hope you’re day feels a little less stressful with the replies Alistair and David have given you, all members of Cml Support are behind your son and your family and I can guarantee you any questions you need answers to will be, your son is being looked after by dedicated professional people who will give him the best treatment he needs. I send my love and support from my family x Peter 

Hi there,

The advice given by other forum members is fairly comprehensive.Might I add on a few points .

The first six /twelve months can be quite tough mentally but if looked at in a positive sense it helps-one specialist said if you are going to have a cancer or a leukemia this is the one to have because the drugs to treat it are available.The fatigue and any bone pains or muscular problems might indicate that the drug is doing its job by starting to kill off the leukemic cells in the bone marrow.

Insurers are beginning to understand some cancers and probably more so with CML in that the risk for traveling is not that great so there will be a loading on the premium but not excessive-North America will be more expensive than other parts of the world apparently.I have used an insurer called World First who are very used to CML being covered,but there are others on the scene now.

On employment as mentioned already the Equality Act is important because once one has a any cancer one becomes disabled and so specific rights are given to employees;it might be an idea to check if the employer has an occupational health specialist who would be able to plan "a phased return to work"-to refuse this would be discrimination under the Act leading to large fines if a tribunal were involved.

I wish your family and son well

Regards

John

Hello, I'm sorry to butt in but I only check here now and again

I continue my travels with my young daughter and its never been a problem, I use a company called insurewith and you fill in a specific online questionnaire about the nature of the CML and they will decide on cover. I've had very positive experiences with them, never been refused travel and the price has been surprisingly OK and it gives me great peace of mind. The company was set up by a cancer survivor to help others live as 'normal a life as possible' which is really the hope for all of us CML carers of children

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Check out Alexa Score.....and Doris Muramatsu.....Laura Boyd