You are here

Hello New to the Forum

Hello everyone, 

I am new to this forum so I apologize if I have posted this introduction in the wrong location.  I was diagnosed with CML a little over a month ago,  I was fortunate enough to be able to be seen at Johns Hopkins Hospital for the early days before I was diagnosed.  My doctors and nurses have been great and they were able to get me on the right track to treating my CML.  I have been put on Tasigna and while the medication is doing well to fight the CML, and am having some side effects that were unexpected by the doctors.  I am however dealing with it one day at a time which is the best I can do :),  

I think the biggest reason that I sought out a place like this, where people are having similar experiences as I am, is because more than ever I feel like I need someone who understands, i mean really understands what I'm going through to talk to.  My Father and sister have been very supportive, but they don't fully understand everything that goes on daily with me, my children are too young to really understand what is happening save that they know "daddy is sick"  and my wife has become completely closed off and loses herself in social media for most hours of the day.  I was the sole income for my family, and the doctors have taken me out of work till they are confident they have my numbers somewhat controlled.  I am left to try and find income and take care of my kids and fight my battle with CML.  I don't know if I have found the right place but I need somewhere to talk to someone who understands, that and can let out my anger or my disappointment or frustration, or even my victories.  I feel like I'm on island.

 

I don't know if this is that place, but if someone knows of a good place where i can speak openly about these things with people that will share and listen too, I would appreciate some direction there, cause I'm lost and falling right now.  

 

And maybe I have made a fool of myself here and now and if I have done that I apologizes and wish everyone luck in their battle, and give my thanks for even a moment of your time.

 

Thank you,

Steve

Hi Steve

So pleased you've found this website as we all understand how you are feeling right now. A CML diagnosis certainly turns life on its head leaving us feeling scared, bewildered and very anxious about the future. These awful feelings do pass as we are lucky enough to have several medications available which can control and manage CML so most of us can get on and live near normal lives - as unlikely as it may seem to you right now. You are obviously very worried as the family breadwinner, but most CML patients of working age are able to carry on with their jobs in time. If you are not able to work now, speak to your company regarding pay while you are off sick - and if the worst comes to the worst, you can claim ESA (Employment and Support Allowance). Macmillan or Citizens Advice will help with this side of things. Macmillan will have a representative in your hospital and they are marvellously supportive.

This site is brilliant for information but just take it little by little. We all suffer side effects of one sort or another from our medications, but for many of us these settle down in time. When I had my diagnosis back in Sept 2009, my consultant began with the words "Congratulations, you have CML". This I found strange to say the least, but in time realised it was because CML is manageable and therefore if we have to have a cancer, this is the one to have.

You are not alone, Steve, and ask any questions you like as someone on this site will always answer.

Try not to over worry - this diagnosis takes its toll on families and carers as well as patients and reactions are not always as expected,

Best wishes

Chrissie

Hello Steve, and welcome to this forum- and yes you have found the right place to talk openly with people who have or are experiencing the same as you. As Chrissie has already  said- it may not seem like it to you just now but CML is very successfully (in fact almost unique amongst cancers) treated with TKI therapy (of which nilotinib/Tasigna is just one) and most of us go on to live our lives normally (or as normal as is possible given that a diagnosis of a life threatening disease like CML changes what 'normal' is). As you go on over the next few weeks and months you will find that your body gets used to the drug and most common side effects will either lessen or disappear. However, everyone is different and if you struggle with any particular effect please take some time to share your worries and concerns about your treatment response and anything else.

I am not sure what side effects your doctors did not expect you to have, but I think those of us on this forum have experienced most of them at one time or another. As for you family - I think the shock of your diagnosis will affect them and in ways that each one of them will need to sort out. It is sometimes hard for those close to us to know how to behave but I am sure your wife will find enough strength to support you as time goes on and she comes to terms with everything in her own way. 

As you are in the US, I can recommend that you contact the National CML Society which is an excellent resource for US patients and more used to advising US based patients on finance and health insurance matters. You can find them here: 

http://www.nationalcmlsociety.org/living-cml/newly-diagnosed

But please feel free to share here, I am sure you will find support and empathy.

Best wishes,

Sandy

Hi Steve

 

Sorry,  I didn't realise that you're in the US (not being aware of US hospitals, unlike Sandy) so what I said about financial support is not relevant. As well as Sandy's recommendation you may also like to join the facebook group aligned to this site where people are posting from around the world.

 

Best

Chrissie

Thank you both for the uplifting words, and encouragement.

Some of the side effects have been very manageable, like I get tired very quickly and I sometimes will get extremely week and have to pretty much sit and do nothing. My doctors however were not expecting me to be in as much pain as I am currently. They said it can happen on the Tasigna but it's one of the rarer side effects. I have a history of lower back issues so extra back pain with me being weak I pretty much expected, but what I did not expect was for most of my body to have aches and pains constantly. Pretty much any place on my body I have a joint I have pain. And my shins and knees are sometimes horrible. And I'm bruising very easily but again sorta expected that, it's the pain that frankly sucks lol. But my doctors are doing a good job of acting accordingly and giving meds to help with the pain. We had talked about trying a different medication than the Tasigna, but it is working very well on getting my levels down they don't want to switch and honestly I don't want to change either, cause it's working very well, and I don't want to change and possibly regress. So now I'm in the game of trying to find a happy medium to control my pain, which confident we will find a good way to manage it effectively.

I am in a weird situation finacally, I had just started a job 4 weeks prior to having that life changing night when I went to the emergency room. So here in the good old USA, if you not in a job for at least 6 months your not eligible for insurance of any kind. So I can not apply for short term or long term disability or really anything through work, though the company I work for has been way more supportive than I could have hope, donating food and gift cards and other small things that help and mean alot. And according to some of the social workers I have spoken with I am not eligible for state disability until I have been out of work at least 6 months. So I'm left trying to get money for bills however I can.

My kids are doing ok with it all my old son who is 9 is really the only one who fully understands what's happening to daddy, and he has stepped up so much it's amazing to me, I'm so proud to be his father. All my children make me so proud. My wife and I have pretty much be fighting, most of the issues coming to the surface are issue we had well before I was diagnosed, but I guess this was the catalyst that brought it to a head. She has buried herself in social media and online friendships and takings selfies of herself in attractive poses, all attention grabbers to get attention. There has even be talk of seperation... but we have had some constructive converstaions, so hopefully things work out after we go to counseling. She went to visit her mother and her family with the kids after Christmas for about 2 weeks, so I've been home by myself for about a week now. I just wish we could have figured out our issues and started working on them before I was diagnosed. But life is life and it all don't happen how we want.

I don't feel like I have had much time to worry about myself and getting better, I have been dealing with everything else and trying to find ways to keep the power on. But all this will hopefully make me stronger, and having time to myself while they are all away visiting family had given me some time to relax and work on me and getting better and time to reflect. I am able to discover good and bad things within me that I need to work on, which is good I can always strive to be better.

I'm sorry this turned into such a long essay post lol, but thank you for your responses. What is the nam of the Facebook group? I would like to join it if I can.

Thank you again,
Steve

Hi Steve

There are plenty of folks on FB who are experiencing the same muscular skeletal  pains as you on Tasigna.These are a common side effect of the meds. Sometimes it helps to see these pains as signs that the Tasigna is doing its work? To access the CML FB site, click on Facebook  at the bottom of this page under "Follow CML Support on:"  and if you have a FB account it should take you straight through).

Sorry to hear of your relationship problems. I hope these will resolve themselves in time - it is a hard time for everyone made more difficult for patients in the US, unfortunately, without the kind of support mechanisms that we in the UK take for granted. I hope you have contacted the US CML site recommended by Sandy, as they may be in a better position to advise on financial matters. You do need time to come to terms with your diagnosis which is life changing and to focus on yourself and what you need. The one good thing is that the meds do work and in this we are very lucky.

Thinking of you as we move into 2016,

Best

Chrissie