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Just diagnosed

Hi,

My name is Gary and I was diagnosed with CML on Dec 20th. I am 27 years old and my WBC was 228 and Hb 8.1

I have been put on Hydroxycaramide and after 1 week my WBC was 168 and Hb 7.5 I am still waiting for my bioposy results.

I was just wondering how everyone found it when they found out, the reason I ask is that I dont seem to be able to connect that this is happening to me. I know I am ill (pain in abdomen, tired all the time, sweats etc) but cant get my head around it being CML.

The consultant seems to think I am in the chronic phase, however I do not understand how he can come to that conclusion. Any help would be thankfully received.

Hi Gary,
Sorry to hear you've joined our club. I found out through a blood test when I went to my GP with tiredness and night sweats. A day later I was sitting down with my haemotologist in the hospital talking about CML. It does seem a little unreal at first for everyone I'm sure.

Your consultant will have seen lots of cases and given your general state of health except for the CML symptoms has worked out that you are most likely in chronic phase, you would be less well otherwise and most (not all) people are caught in chronic phase these days I believe.

Take some comfort in the knowledge that most of us that were caught early enough are well after many years on the fantastic new CML drugs around. I was diagnosed with WBC of 130 five years ago. After a week on hydroxyurea and a couple of weeks on Glivec my WBC was normal and I now have a 4 log reduction (almost undetectable, 10,000 times lower than at diagnosis) in the Ph+ chromosome responsible for the CML.

There are lots of people on this site with good advice and everyone is always very supportive, so ask away if you ever need any info or help.

Cheers, Richard

hello Gary,
i am sorry you are feeling confused and finding it hard to 'connect' to your diagnosis. this is a common and understandable reaction and one which many of us have experienced. i was diagnosed in december 1998 and sometimes still find it hard to accept.
you will need to give yourself some time to come to terms with it and allow yourself some space to learn exactly what CML is and how it behaves. you will need to ask a lot of questions of your consultant who, hopefully, will be able to engage with you and reassure you.
CML is a very well understood disease and has had a vast amount of research devoted to it. it is a relatively straight forward cancer to understand which is why there is now a choice of drugs that enable CML patients to live normal lives.
i am sure your consultant is right when he says your are in chronic phase. he will be able to tell this from the numerous tests you have had and i expect the biopsy result will confirm the blood tests.
CML is identified by the presence of an acquired abnormality called the philadelphia chromosome in some of the white cells in your blood. these cells do not behave normally which is why you are experiencing the symptoms you describe. your doctor will be able to see how many of your cells have the PH chromosome and can confindently assess the disease stage that you are at. please go to the FAQ/glossary section of this site for a more detailed description of the disease and how it is assessed.
but i would say that you can have confidence that your doctor knows what he/she is talking about.
you will probably be put on Glivec in the next few weeks and will find your disease starts to recede and your symptoms will disappear.
if you need any further support or advice please do not hesitate to ask on this forum. we are all CML patients or carers of those with CML and are committed to helping and supporting others in any way we can.
there is a lot to learn but you will find that the more you learn the stronger you will become.
best wishes,
Sandy ;o)

Hi gary,i was 26 when i was diagnosed,im now 30 and doing very well,please email me at kathy.prudence@homecall.co.uk if you would like a chat,take care,kathy

Hi, my name is Rachel and my husband Gary was diagnosed in July 2004. His WBC was 156 at that time. After Hydroxyurea and Glivec, he is now trying Dasatanib, a newer CML drug and he is doing well. He is 42 and during all this time, he has never taken a day off work due to CML. He has changed relatively little in his lifestyle and carries on as normal. There are people who have had CML for far longer and continue to live normal lives, as I hope you will too. This site is a godsend for all your questions and worries so log on as often as necessary to simply put your own mind at rest. I know thats what I did when we were given the diagnosis. Take care RACHEL

Thanks everyone for your comments they really do help.

It is good to hear from people that are living normal lives even though they have CML.

Hi Kathy,

Thank you for including your email address in your post.

Since this list has gone away from including the email address of the poster, it becomes more and more difficult to figure out who is posting.

A good example is Richard's post just ahead of yours. I have a total of 13 Richards in the Zero Club and I'm always looking to add more. Is this Richard a new Zero?

Often I have comments or suggestions that are not approriate to post on the list. That person's email address could be a life saver.

For Gary ... hang in there. It looks like you were diagnosed in early chronic stage. Stomache pain could easily be from an enlarged spleen. That will dissappear pretty quickly. Night sweats is a common sympton.

For Rachel ... send me a note. Gary should have a number.

Zavie

Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca

Hi Gary
A club no-one really wants to join, but here we all are. I can still remember October 1996 word perfect when I was dx, the unusual sensation of my very first bone marrow biopsy, injections of Interferon, but those days have gone thanks to the massive advances in treatments. It does seem like the end of the world, but it really isn't, just kep your mind focused on accepting the preence of cml in your body, but do not make any allowances for it, remember you are not on a cancer journey as the social workers would have us think, it is tragging along with you for a while, and could well fall off along the way. Which hospital are you going to ? Keep reading this site, ask as many questions as you like, there is a wealth of knowledge here all waiting for you. You will never be alone.
Have fun Gary and keep smiling
Keith

HI, been to the hospital today and they have had the biopsy results back which confirms I am Ph+. I am at the Royal Blackburn Hospital, I have been put on Glivec today 400mg as well as the Hydroxycarbamide. I feel a little more comfortable about it all now as it is confirmed and I cant kid myself that a mistake has been made. My WBC was 141 today so going down a little more. My spleen is still very big so the consultant says he does not want to give me a blood transfustion yet even though my Hb is 7.1. I have to go back next week. Iave been signed off work for 4 months which was a bit of a shock.

Welcome to the cml community - I'm sure that you'll find lots of support, help, and advice from this site, you've made a good start by finding this community, I'm sure that there are many cml'ers out there who are not able to access or do not know about this site.
My wife is the one with cml, and she has had very variable Hb levels, and it was particularly low around the time of diagnosis. It is rarely higher than about 10.5 these days ( 4 years on from dx)She has never had to have a transfusion, the Hb came up after the wbc count normalised.
You may find that happens with you. Hope you make good progress on the Glivec.
Remember, take the tablet with plenty of water, and after you've eaten a reasonable amount of food, a lot of people find that helps to avoid the nausea / vomiting which can happen when taking Glivec.
You may well experience some of the more minor side effects which will be listed on the information leaflet which you should have received with the tablets.
If you've got any questions about your medication / your condition which you need help with, there are people who contribute to this site who have years of experience of cml and taking Glivec or other medication.
Obviously, your ultimate point of reference will always be the medical staff who are treating you, but it's sometimes useful to ask if others are experiencing the same sort of issues as you.
Best Wishes

Paul

Hi Gary,

Sorry to hear about your diagnosis.

I'm 26 and was diagnosed with CML in July 2005 and went on to have a transplant in November 2005 as I was lucky enough to have a sibling donor. Life is going great and I've been clear for just over 2 years and am now training for my second marathon since transplant. At diagnosis I had a WBC of 330 and my only symtom was a huge spleen. Everyone accused me of having a beer belly! I was also put on hydroxyurea and my WBC returned to normal in 3-4 weeks.

Most patients are diagnosed in the chronic phase so it's very likely.

Email me at m.coyne3@ntlworld.com if you like and I'll answer any questions you have about my experience. I started a caringbridge site just before my transplant which you can read if you've got a minute by clicking on my name at the end of this post in blue, you can read about how I was diagnosed in the my story tab.

It does get easier as you come to terms with the shock of diagnosis it just takes time. I done the same sort of thing as you I joined a couple of forums and asked many questions.

Take care,
Martyn

Please sponsor me for the 2008 marathon!

Hi Gary,
Just read your earlier post and noted that you are being treated at Blackburn. We live in Bolton, just down the road and my Gary was being treated at Bolton. Currently he is being treated at Manchester as he is being monitored on the new drug Dasatanib. If you want to email, we are on gary@halsalldg.fsnet.co.uk or halsalldg@talktalk.net
RACHEL

Hi Garry,
Im sorry to hear of your diagnosis but please feel some comfort that you have found the right place for information and support.

My Son was diagnosed at the age of 15 with CML and I knew nothing about CML whatsoever. When the Dr's told us that his white blood count was 650 we had no idea that it was that serious.

With the help of this site I managed to learn alot about the disease and I can only repeat what Sandy and the others have already said - there is a lot to learn but you will find that the more you learn the stronger you will become.

Take care and sending you lots of love

Jayne x

Hannah Bracegirdle

Hi Gary, I was diagnosed in Oct 2007, I found out after having a routine blood test because Im pregnant. So it was a massive shock. My wbc was 116. I didnt really and still dont have any symptoms. Just prob more tiered than usual but I had put that down to being pregnant and having two children already. I have been on lukophresis once every two weeks and WBC has gone down to 72. I dont have to go back for another three weeks so everything seems to be going well. I felt the same as you. It still seems unreal but i think its because Ive not started any proper treatment yet. So I suspect after having the baby it will become more real! Does anyone else know or been in my situation? Be great to hear from somebody whos had CML while pregnant.

Hi Gary,

sorry to hear these news. David (my husband) is 34 now, he was diagnosed at JUne 2007. Doctor discover CML just by a routine lab test, as he had no symptoms except for night sweatings. After 6 months in gleevec, he is feeling well and working in normal basis.
I know, how difficult is to get to the idea of CML. We are not really used to it yet. We are trying to keep going and live a normal life. Hopefully, the treatment works for you. You'll be fine.
I do find some confort in the website, this is a big family who can oriented you in some points or just listening you. ^Please feel free to ask any questions
My bests for you.