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New to the group.

Hi All,

I came across this website while I was searching the net for information to combat the hair loss resulted from using Nilotinib. I decided to join the group. I have been living with CML for almost 10 years. Been on Nilotinib for almost 5 and my hair has just got worse over the years. It affected me so that I shaved it all off and have been bald for 3 years. Funny how something like not having hair can make you so self conscious. 

In my experience, I have not been able to comfortably talk about my diagnosis with many people, it seems that when they find out they go into shock and avoid me, one has even gone so far as to ask me if its contagious. Most can't seem to have a normal conversation without bringing up 'leukemia' and they seem so uncomfortable. I wonder sometimes if others living with this illness has the same issues or if its just me. However I cannot ignore the handful of people who are wonderful supporters even though I see the sadness in their eyes if I have even a headache, they're ready to prepare my food or run around to make me comfortable as if I've got one foot in the grave. Love them to bits, was just wondering what others have experienced. 

 

Hello Malikah, welcome to this group.

I must say that I have not come across extreme hair loss as a side effect of TKI therapy... at least to the extent that you indicate you have suffered. You said you have had CML for 10 years, did you find your hair was thinning before you started TKI therapy or is nilotinib your 1st or 2nd line therapy after imatinib or some other treatment that could have caused this side effect? It could be that you are suffering from a hormonal disturbance such as low thyroid and/or other hormones, which can cause several symptoms, one of them being thinning hair/hair loss.

Regarding talking with others about CML and the general reaction when people hear the work 'Leukaemia' (which is normally a fearful one because of the general public's lack of knowledge about leukaemia and the fact that CML is only one of at least 4 main types). Most of us have had similar experiences, with people (including close friends) actively avoiding us as we are transformed into 'the patient' and/or they avoid the subject altogether. Some make an effort to be sympathetic but then find they don't know how to respond or what to say.

In part, that is why this website and its forum exists, because those who understand best are those who have been diagnosed with CML and, in a manner of speaking, are in the same 'lifeboat'. We have all endured the diagnosis, the same fear, apprehension, worry, panic and sometimes very depressing times and all this on top of dealing with the strange and myriad number of physical side effects from different TKI treatments.

Having said all that, for most of us, once the first year or so is over and blood counts return to the right levels and it is obvious the disease is responding to therapy, it is possible to have a kind of 'normal life' ..... I suppose you could say that having come to terms with the diagnosis and learned as much as is possible about how cml, and crucially how TKI therapy works, with all the complications of test results etc. this could be described as the 'new normal'.  Long term data from the IRIS and other studies (9 and 7 year data) is showing that it is highly likely that those who respond to TKI therapy (as well as people, like me with more complex disease 'pictures' have responded well to stem cell transplantation) will live out their normal life span. In other words will not die from CML. 

If you are in the UK, and I am not sure where you are based, I suggest you try to attend the upcoming CML Patient Day which this year is in Manchester on 24th September. If you are not based in the UK then there may be other ways you can be in touch with other CML patients. This forum (and other online groups) is a good way to start and it may be all that you need. Talking, whether face to face or by email can go a long way to help combat feelings of isolation. 

Best wishes,

Sandy

 

 

Hi Sandy

Thank you for your response. 

Firstly, I reside in Cape Town South Africa so unfortunately & regrettably will not be able to attend the CML Patient Day. I will look into finding other ways of being part of such discussions.

Regarding the meds, I started with Gleevec, about a year later I had developed a resistance & my treatment was changed to Tasigna Nilotinib. My hair was thinning slightly since before my diagnosis but during the same year of my diagnosis (diagnosed 7 November 2007) but not severely.

I was told by my Dr's that the CML causes hair loss but I shouldn't worry. Once I started the Gleevec it stopped falling out, I still had a full head of hair. I had naturally thick curly hair that was a nightmare for my mother to deal with, and its just been shocking to have seen what it was to what it is today. I spoke to my haematologist who was surprised that my hair was falling out so much since starting Nilotinib and referred me to a dermatologist for a checkup to see if it could be something else. They agreed that it must be the Nilotinib as they could find no other reason as to why my hair was falling out so badly. We checked adverse effects of Nilotinib and under rare adverse effects was hair loss, they concluded that it could just be a rare case.

My blood results have been really good for a long time & still is. I have been using this product called Vigro (capsules, hair tonic and shampoo conditioner), one of the nurses at the Hospital I attend suggested I try but regrowth has been painfully slow, and my hair is still very dry and brittle. To be honest I haven't checked for hormonal causes because I've been so healthy. It's strange for me because I try to lead a healthy lifestyle with exercise and good food and only get the occasional headache in terms of adverse effects of my meds. 

What do you think I should do? I honestly don't know from here. My Dr told me that I should focus more on being grateful that I am healthy and that having hair is really a minor thing that I can do without. I see where she is coming from but it is difficult. Especially, since people would blatantly ask me why my hair looks the way it does or why I shaved it.