Hi I'm Jade, I'm 20 years old,I was diagnosed with CML 2 weeks ago and have started Gilvec. I'm still scared and I try to put it to the back of my mind but have read lots of comments from this and have helped a lot, mainly scare of how long I'm gonna live and if it's going to work, I'm only 20 and have got a lot planned for life. It's so wierd because I didn't go to the doctors with anything linked to CML, they found it by chance so came to a real shock!
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Hi
Hello Jade and welcome. Now if I had my way no-one young would ever get ill, let alone get cancer. But regrettably I don't.
It will be a very worrying time for you and I don't want to trivialise what I appreciate you will be feeling and going through. It is a big thing. You feel how you want to feel and I'd be gob smacked if your emotions aren't all over the place as you come to terms with what you know. You said you're trying to put it to the back of your mind. I think it's better to do your utmost to deal with it.
I'd encourage you to gain knowledge on the subject. I sometimes joke about regretting the day I was compelled to actually properly know about leukaemia and the immune system and blood but I think as you learn more it will help you to be reassured by taking some control back again. The more you come to appreciate that CML is very treatable the better.
I often say I try not to worry about what I can't control and effect. Easy to say. Harder to do.
I also gain huge confidence from knowing an absolute truth about CML. You can live a good life with it. I have. I was diagnosed in the old days when treatment options were nowhere near like the great stuff available now and also at a stage when I was seriously ill. So not the chance diagnosis at all. I knew I most definitely had something serious. But you know what: even with all that I'm here 21 years later and my health is very good. I'm 65 and still work with my own business doing a job that is quite physical in a sporting activity. (I train horses and people to undertake a variety of equestrian activities).
You said it was chance and a shock. As a sports coach I'd try to egg you on to frame that differently: You've been really lucky that it's been discovered that you've got something you didn't even know you had. You didn't know you had it and weren't worried when you didn't know so what's different? What's been discovered is addressed by taking a tablet. So far. So good. Try to feel relieved rather than scared. I know it's not easy. I think of it as knowing and being treated is better than not knowing and not having a diagnosis. What doesn't kill you makes you stronger. What touches you makes you more understanding. What challenges you makes you more confident. What threatens you makes you bolder and braver.
There's no reason why having CML will prevent you from doing the things you planned to do in life. Unless of course you were planning on living in the remote rain forest 200 miles from a doctor? Then I'd suggest a plan B or plan C. You may have to adjust your plans but hey that's life.... when I was 20 I wanted to do something entirely different. I developed a plan B and plan C and then took an entirely different course as I realised that's life and I was not going to enjoy or be any good at the thing I wanted to do when I was 20. Better still have your big plan and also take this as huge opportunity to begin to plan to acquire skills and experience and behaviours to help you to adapt and change.
You may want to talk to your doctor about your feelings and concerns. We're also here on this forum and know there's no such thing as a silly question when your brains rattling around with all those emotions as you've just been compelled to join the club that you most likely didn't even know existed. But you're here now so take advantage of it.
Hi Jade,
It's all a bit of an emotional rollercoaster, isn't it?
Darley has given you some great advice, but I'll just add my little bit...
It's a real shock to find out your have CML when you were least expecting it, on a routine appointment you said. The good thing about that is that is was likely spotted early, so that's a good point to start with! You're only 20, have a lot planned for life and given the modern medicine we have for CML, there is an extremely high chance that you will get to do everything you planned for as long as you planned. The vast majority of patients respond exceptionally well to the medication that is available. For those that don't, there are other medications available and other treatment options - but there's no reason to think you'd be in that group.
You mentioned that you are trying to put it the back of your mind. I wouldn't. That will just make doubts and worries fester back there and give you nervousness. My advice would be to learn as much as you can about CML so that you understand what is happening to you, how your drugs work, and then you become a much more informed and relaxed patient. I'd say I'm a pretty clued up patient, which means I can have very good conversations with my doctor when needed about treatment choices. That said, everything is going pretty well for me now so my doctor visits have turned into social meetings almost!
You'll find this forum a great resource to learn about CML. Ask any questions you have, no matter how big or small.
The first few months are the hardest, on the mind especially. Just remember that cancer is no fun, but the one you (and all of us here) have is one that has amazing treatment choices and options.
David.
Thank you so so much to both you Darley and David! It helps so much to know I can have everyone's support and help trough this because it really has been worrying me and to have people who are going through it to to speak to is a great relief and gives me such a positive outlook so thank you! I've been reading a lot of stuff on here and have developed a good knowledge of it now and have conversations with people about it which I couldn't do before. It's so scary to k is that you have the dreaded C word that wveryone gasps at but I've got to keep thinking like you both said that it's very treatable and will make me a lot stronger to be positive about it
Hi Jade
I can't really add anything extra to Darley and David except to say that we are all here for you to ask any questions you like. My consultant started his diagnosis to me with the words "Congratulations" which at the time confused me so much , but now I realise if we have to have cancer, this is the one to have as it's the one they know so much about. The tablets have changed the outlook completely and, in time, you may find you can stop the medication safely. This is being trialled now for patients who have been in a safe place for a couple of years.
Once you have got used to the tablets, you should find you can carry on with a normal life and do the things you want to do,
Best wishes
Chrissie ( diagnosed Sept 2009)
Hi Jade
I'm a long time lurker on this forum, but have never posted before. My (then) 20 year old son was diagnosed with CML four years ago whilst he was at university. Yes, it was scary at first for him, his family and friends, but four years on it has made very little impact on his life. He had to retake a few university exams that year as he was ill during term time and missed quite a lot, but subsequently has: spent a student year in the USA (and had plenty of foreign holidays), finished his degree with a good mark, taken a masters degree and is now in a well paid graduate job. He plays a lot of sport, has a very lively social life (perhaps doesn't drink as much as he might otherwise) and apart from the one Imatinib tablet per day and four monthly visits to hospital for a check up, his life is that of a healthy active 24 year old. I hope (and expect) you will be back to a "normal" life sooner than you expect.
Hi Jade
Welcome to the Group, I was very sorry to hear about your recent diagnosis, this first few weeks and months particularly can be unbelievably scary, we have all been there!
You have started on an outstanding drug, Glivec was introduced approximately 15 years ago and has done very well. Many patients, including myself, are on this drug and lead a completely normal life, personally I work full time, play sport and have very few side effects, I am lucky and do appreciate that fact. Unfortunately others do suffer with side effects from Glivec to a varying degree. There are four other drugs available for CML these days although their availability can vary dependant on where you are in the world, on the health service you have and whether or not funding is available. Given the way you have spelt Glivec, I assume you are in the UK, therefore have access to the drug via the NHS, there is also a second drug being Nilotinib readily available through our health service.
The drugs we have work for in excess of 90% of patients therefore it is highly probable that you will lead a long and fulfilling life. Indeed in recent years, and I have been diagnosed five years, so much has changed already. At the point of my diagnosis, the advice was ‘you will be on these drugs for life’. There are now ‘stopping trials’ going on around the world for patients that reach deep enough responses. Again the advice five years ago was ‘pregnancy is out of the question’, whilst care must be taken and good supervision needed, so long as the depth of response is there and a sufficient duration of response as well, there are many ladies now successfully having children.
Be wary of googling too much as there is much outdated information. The group you have found here is very good with a lot of help, guidance and information that you can rely on. There are other sources of information in the UK of course, such as Blood Wise, Leukaemia Care, McMillan etc., additionally there are more informal groups for example on Facebook, such as CML, or CML-UK.
I hope my post helps a little bit, as mentioned the early weeks are very scary but things do generally settle down very quickly, its amazing how we have the capacity to accept these things, particularly when we know the outlook is more than likely very positive. All the best for your journey.
Nigel
Thank you so so much to all of you, Christie, Elaine and Nigel! I'm glad to hear everyone's doing so well, I'm getting to grips without it now and had my first result today and I've been on Glivec for 6 days and already my counts gone down from 144 to 122 :) the only side effects I get is that I've got a really itchy rash on my arms so hoping everything still goes smoothly except I've got really narrow veins which like to hide so I'm full of bruises! Wish you all the best of luck and thank you again
Glad to hear that already your results are going in the right direction. Now for some practical suggestions with regard to things you've mentioned:
Veins: Here's where 21 years of experience comes in ;) IF you get hot and the blood pumping with exercise that will help. When you know you're going to have blood taken make sure you blast that car heater on and jog from the car to the waiting room and run up any stairs there are. Squeeze a ball or pump your hand rapidly before. Also drink loads of water before your test. If you're dehydrated they won't show up as well. IF you use arnica cream afterwards it will help to prevent bruising. Make sure you alternate arms and veins as it gives them chance to recouperate and prevent collapsing. Not all nurses and doctors are the same ... believe me I know that and some are VERY competent and some are a little cack handed and you'll kind of learn how to manage things. General rule.... it someone has had 3 goes then tell them to use another vein and start again. Make sure the tourneque is in the right place and tight... if not tell them. It has to be above the bicep muscle not on it and it needs to be tight and you'd be amazed to come to learn how many less experienced nurses even get that wrong. You could wrap a hot damp flannel round your arm and when I was in hospital the nurses used to microwave a damp towel for a minute and wrap arms for patients who had real difficulty with veins. Tapping and rubbing can help but not just a couple of cursory taps that some might do... so might help if you do it before you go in. IF you have serious problems then there is something called a vein viewer that again specialist hospitals will use - it's just an infra red light. Finally there is medication that can help your veins relax and be easier to access if all that doesn't work and it's a real difficulty. The other thing to consider is IF you know you're having LOTS of stuff done VERY regularly and nowadays that really is a lot less likely then you may be offered or ask for an under the skin port to be fitted.
Itchy rash? I used a product called balneum albeit slightly different circumstances: when I was post transplant and had graft versus host disease and wanted to claw my skin off. It was the best. I think it might be available non prescription but I'm sure if you ask your doctor you'll get sorted.
Hi Jade
I'm so sorry that you have to deal with such a life-changing diagnosis at age 20. I am 37 and three months ago today I received my devastating news and I know how you feel - I remember every little thing about the day I discovered I have CML.
I just want to share some hope - it's only 3 months and already I am feeling a lot more positive about my situation. My blood counts have already moved in the right direction and, even though I'm still terrified of not responding to the medication, I feel better with each passing day. The drugs are excellent, the outlook has changed dramatically since Glivec was discovered and it is still possible to have a great life with this chronic disease. The word "cancer" is so horrifying, but as my doctor told me, CML is regarded as a cancer because it meets the criteria for the definition - an abonormality that causes cells of a certain type to grow out of control - but she said I should get rid of the thought that it is cancer. She suggested that I regard it as a chronic blood condition that requires, in all likelihood, lifelong treatment, but that will not cause my death. Ever since looking at it in this way, I have become more positive, as I'm sure you will too once you get used to living with this condition.
The people here are great - darley is inspirational (having recovered from blast crisis) and there is so much hope from people like Sandy, Lucas, Nigel, David and the rest of the regular posters. I think that I've probably read every story on here, and they provide so much hope.
Although this disease is with me every day, I have not let it affect how I live my life. I do my regular activities, still do my job full-time, eat everything I used to eat except grapefruit (who cares? It's bitter anyway) and try my best to get used to the fact that my life is no longer the way it was a year ago. My doctor has even cleared me to travel as normal, so on Friday I am going to visit Zambia and the Victoria Falls, followed by a trip to Panama in April. So I'm telling you that life can still be good with this condition - it doesn't need to define you and things WILL get better. They already have for me!
In a strange way, CML has been very positive - I have realised how much my friends, family and colleagues care for me and I have developed a better outlook on life. I was going through some difficulties a few years ago and stored inspirational quotes and pictures on my computer that I could refer to when I was down. Oddly, I called this folder "CML" which, long before I had heard of this disease, I took to be an abbreviation for "Change My Life". Now I have CML and I am determined to let it change my life for the better - at the very least I will ensure that my diagnosis allows me to appreciate what I have much more!
All the best with your treatment, Jade - I'm sure that things will go well for you. There's no reason to think that they shouldn't, with the remarkable success of this wonderful drug.
Regards from South Africa
Martin