You are here

New Member

Hello Everyone,

Im just introducing myself, My name is Amanda, Im 31 years old, Mum of one fantastic little girl who is 6 yrs old, Was diagnosed with CML just a few weeks ago, 20th of August 2008, Im on Glivec and in the few short weeks i have been on the medication it has brought my white count down from 207 to 90, My 2 sisters and brother had tests done and the results come back that 2 of them are a match, still trying to get my head around things as its very early days but i would like to learn more it, im so glad i came across this site

welcome to the growing family of CML patients and their carers. Make sure you post any little niggle or worry you have as someone somewhere will have had the same problem and will help but do remember that no 2 people are the same so symptoms and treatments will vary. Glad to hear you have 2 matches. I am not a match for my son who is 11 and i find it very srange that a stranger will be closer match to my son than i am.

Hi Amanda,

It would be fantastic that the people who are diagnosed are the last of the population to have this condition but alas
our improved blood diagnostics are picking up people very early so that is just fantastic for good health.

As Julie stated that everyone is different and will have
different side effects from the drugs but many of us have had the same just varying degrees.

August seems a great time to be diagnosed - I was also diagnosed in August of 2007 so just have had my 1st cancerversary.

To give you a great positive - I have become PCRU just on 12 months and all bloods within a normal range.

The negative is that I have had a couple of pages of side effects over that time from rashes, hives, shingles, blood blister rash, other funny rash type thing on feet and hands - that was a doosey could not wear shoes; terrible facial odeama and eye odeama. The big "D", vomiting, weight gain, weight loss, whitening of skin, sunburn, metallic taste in mouth, lactose intolerant; having to learn what to eat with glivec, bone ache, bone pain, muscle cramps in legs, shoulders and back, fatigue and the more serious was hormone issues and period cramps and pain and change of blood in periods and time length of periods.

For all my side effect issues, every one of those has been managed and I still my bloods were hitting the results that were needed to continue on with medication until now where bloods are normal.

My only suggestion:

Ask your specialist for a management plan for you
if you need an emergency of any kind.

Commence a working relationship with your specialists and GP.
Get all your results (hard copy)

Ask questions.

I had a problem continually with my periods due to glivec and CML? (New update of glivec side effects - hormones and period pain).If you do not have a gyno then make an appointment and discuss hormonal issues with your CML specialist and Gyno if you have any.

Write a diary of any side effects - dates, type, how long.
Ask the people on this support group (chat) for any hints that they may have and for a shoulder if need be.

If any side effects contact your medical team for treatment.

When first diagnosed with CML it becomes a huge learning and management curve.

The most important aspect is that you can have the most
fantastic life with CML.

Keep in the very best health
and welcome to people who will care about you

Sue (Aussie)

Hello Amanda,
I am glad you have found this site so soon after your diagnosis. I am sure you will take some time to get to grips with it all and take on board all the information about CML.
Meanwhile, you should concentrate on your immediate needs which will include fiding out about your best therapeutic options. I am sure your doctor will help you to do this.

Given that you are young and that you have 2 sibling HLA matches then you will need to find out and assess all possible treatment options... including stem cell transplants.

The diaries on this site are written by those of us that have had stem cell transplants... and they are very varied in their protocols and outcomes, so you will have a lot of studying to do over the coming months.
But because of Glivec, you have time to come to terms with your diagnosis and decide what is right for you.

The vast majority of chronic stage cml patients respond very well to Glivec, and have very few (and easily managed) side effects.

In contrast to Sue's long list, I did not have any side effects worth mentioning apart from some extra tiredness, but then having CML made me extra tired too!
I was able to live life normally and continue to work. After 3.5 years taking Glivec I eventually went on to have a stem cell transplant ( a mini allograft) as my younger brother was a good HLA matched donor. I am 5 years post transplant now and have a really good quality of life.

I am sorry you are having to deal with CML at this point in your life but I hope you can find the support and information you will need here and maybe also on the other related patient support sites that we are linked to. You will find information about these on our links page.

If you need further help or advice, please do not hesitate to ask.

best wishes,

Sandy

Hi amanda,i was diagnosed at 26 im now 31 i also have a little boy who is 6 in november,if you would like to ask me anything then email me on kathy.prudence@homecall.co.uk .hope your ok its alot to take in,love kathy

Helo Julie,
You're the first person I've seen with a young child with CML. My father just attended a conference in Boston, Mass sponsored by the European Hematologic Society on CML and none of the scientists there ever treated a 10 year old with CML.

I was wondering whether we could chat a bit about the conditions of our boys. My son was diagnosed on May 22, 2008 and is currently on Imatinib 500 mg. He may have MRD as well so we're looking into BMT options now (my younger boy is an HLA match.)

Look forward to hearing from you.

Tracey (TAD)

Hi Tracey my email address if you want to get in touch is julie@mason67.fslife.co.uk

Julie