Newly registered and saying hello.

Hiya Joanne - 

I am Irish too, and there are a few of us on this forum. I live in London, though.

There is, or at least was, a sort of informal CML group in Ireland. I've no idea if it's still going. Here's the details:

http://www.cmladvocates.net/cml-groups-list/19-europe/57-ireland-cml-soc...

Regarding the two fasting periods for nilotinib ... if this is really a big problem, could you talk to your doctor about dasatinib? (or even imatinib). Both should be available through the HSE. I take dasatinib as opposed to nilotinib because my job would have been hard with nilotinib.

David.

Thanks for replying David and Libby.
I will make contact with the link you sent David as well as following this forum. All the technical CML language is still a bit overwhelming but knowledge is a good way of feeling more in control. It wasn't really explained to me why Nilotinib was chosen for me. However, I am doing well so far so will persevere with it. It's a matter of timing the tablets well as meal breaks are unpredictable at work. Realistically I won't be going back to work full time soon. Hopefully I will be able to progress to taking Nilotinib once daily at some stage??
Libby. My arm numbness has been caused by inflammation pressing on a nerve in the spinal cord. No cause has been found with blood tests and lumbar puncture! No link has been found with the CML either. My right hand and right foot do get very cold tho compared to the left side! I am also awaiting results of the 3mth PCR test. Cold fingers and cold toes crossed for us both eh!!

Hi Michelle,
Thanks for getting in touch. It isn't as isolating when you read stories of others who have had very similar experiences.
There seems to be a few like Tim and I that were diagnosed within the last 6mths so we are at a similar stage on the CML journey.
For the first few months I thought I would wake up and it was all a dream as it was surreal.
I think I now need to start asking more questions when I get the chance so I feel more in control of my own treatment and make plans for the future as you two have.
Bye for now.
Joanne.

Hi Joanne 

My husband was also diagnosed at the end of Sept 2017 as a result of a prolonged and very painful gout attack. Now we are so thankful the doctor decided to run extra blood tests as his WBC was over 200k and he had an extended spleen. He has been on Dasatinib since the start of Oct and has responded really well . He was very tired the first two months and still has some days where he feels very tired but on the whole is almost back to normal and he def has way more energy than he did in the 6 months leading up to dx.  He swears by drinking copious amounts of water and for the last month has taken Curcumin to help with some inflammation , mainly around the eyes. I think that has improved his colour as well. He feels the cold a lot more than he used to do as well. 

He doesn’t want to think about or be defined by CML so I am the one who has done all the research. It was initially a very steep learning curve but his doctor has been  great about answering all my questions. And this site and before that the LLS message board were a godsend to me, who never took a biology class past the age of 13.  We make sure to get all the blood test results back prior to meeting with his doctor so that I could go through them in advance of the mtg and have my list of questions ready. I think because I am advocating for my husband and not myself I am much more assertive than normal. 

I am from Scotland and my husband is German with some Welsh and Irish thrown in. Living in California for ten years now , his diagnosis made us feel very homesick,  esp being so far away from family. 

Best wishes to you.

louise 

Hi Sligo Jo,

i commend you on on your strength of sharing your story. I hope that you can continue to come on these forums to gain support. It is a great way to channel feelings because you feel as if your family and friends do not understand.

I live in Ny (U.S.) and have been diagnosed with CML for 12 years now and it’s still a battle. I was first on gleevec and that led to me having some bad side effects that I am still dealing with today. I then switched to sprycel (dasatinib) which has been working better. I have read everyone replies and everyone’s story will be different. The best thing that you can do is to research, research, research. I actually researched my information and went to the doctors with it early on. I can be off my meds but I’m afraid of my WBC coming out of remission in the molecular stage. I decided to channel all thoughts and feelings into a book. I am now an aspiring author and helping others self heal. My book relates to my journey and what I went through as a CML patient while dealing with normal life. Right now you may feel as you are alone and I can relate.  My book actually allows for self-healing by allowing the reader to write their thoughts by answering questions. If anyone who is reading this, male or female, are interested in purchasing the book I can leave the details below. If you have any further questions you may want to ask me since I have been dealing with it for so many years so I am open and willing to answer. Praying for strength and humility for all of us!

Colorful Ribbons Presents The Orange Journey: The Beginning volume 1 can be found on Amazon.com, Amazon.ca, Amazon.co.uk, Amazon.de, Amazon.es, Amazon.it and Amazon.fr. 

Hi Sligo Joe,

I also live in Sligo. I was diagnosed with CML in Sept 2015 and have been taking Tasigna, if you want to meet up for coffee just to chat pm me and we can meet up.
Anytime after 11:30 as that is when I finish fasting!!

Liz

If you want to send someone a private message, you can click on their name beside a forum post, then on the next page you can press "contact" and that will allow you to send a private message.

David.