Three years in - just found Cancer Connections!

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Three years in - just found Cancer Connections!

Hi everyone. I was diagnosed with CML - Chronic Myeloid Leukaemia - about three years ago, and have only just found this site, so here I am. Hi! It's been quite the journey. I went to a brand new GP for an 0830 appointment to talk about some little niggles (earache, weird feeling toe that I thought I may have fractured, weight loss beyond what I could explain), fortunately for me she was super-thorough despite my forgetting to mention all manner of symptoms, and did blood tests. I was in hospital that evening, taking piles of Hydrea (the bright pink & dusty turquoise horse-pill sized chemo) to bring my sky high white cell count down. Fortunately, there are long term targeted therapies for CML now, so treatment hasn't been quite as scary as it could've been (bone marrow transplant? No thanks!). But it's still been a bit rough. The first drugs worked for a few months, then didn't. The second drugs appear to be going ok... I'm not in remission. I'm stable. I'm 'close' to remission. With any luck I'll get there, and stay there. And then be able to consider coming off the drugs, and maybe being able to call myself a survivor. That's at least two years off (you have to be in remission, on the drugs, for two years prior to stopping taking them). But hopefully it'll happen. I'm glad to have found this place though, and be able to hang out with people who get it 🙂
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Re: Three years in - just found Cancer Connections!

That sounds really promising Flowerpot! Best of luck with the remainder of your treatment. 'Remission' has a really nice sound to it doesn't it 🙂
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Re: Three years in - just found Cancer Connections!

Hi flowerpot. Hope you are well and truly on the way up now. Two weeks ago my hubby has just been diagnosed similar to you. He is 44 and we are all shocked. He has 10 percent blast cells and unfortunately is in the accelerated stage. Dr started him on hydrea immediately. Pending the TKI drug. We are now in hospital with him he has been running a fever and has Septis now which is common. A hard road ahead I think. I hope you have made it into remission. My question to you is what stage of mcl were you diagnosed? Cheers . Hope you are feeling ok. Shelly.
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Re: Three years in - just found Cancer Connections!

I'm really sorry you're having to deal with this too - it's a massive shock isn't it? Glad he's in hospital and on the Hydrea already, that should help, and certainly beats going undiagnosed! Actually, I honestly don't know what stage I was in at diagnosis - I'd always assumed it was 'just' the chronic stage, but had never asked (will have to now...). My WCC (white cell count) was up over 400, rather than the 4-11 that it's meant to be; my spleen was rock hard and six-seven inches long; I'd lost 20-25% of my body weight; and was getting all the usual symptoms like the hot flushes/sweats and so on. I didn't have a constant fever, it was very much up and down, sometimes within half an hour I'd go from so hot I had to strip off entirely, to freezing and shivering despite being covered in blankets. I really hope they're getting the septis under control asap - I guess that's adding to the worry for you. My initial treatment path was almost three weeks of Hydrea, then started on the imatinib/Gleevec whilst still taking Hydrea for another month or so, then no more Hydrea, just imatinib/Gleevec. And lots of being stuck with a whole variety of needles! I then had some complications with Gleevec not working for me, having to have more Hydrea, and eventually switching onto nilotinib/Tasigna, but Gleevec works really well for the vast majority of people - hopefully it'll work just as well for your hubby. I'm now just over four years in (one hundred percent four year survival rate, woohoo!), am still on nilotinib, and am, well, I'm not really on the way *up* per se, but I'm not on the way down either - I'm stable, with a low enough BCR-ABL count that the vampires at the hospital only want blood, no more bone marrow, but it's still non-zero, so twice daily nilotinib. Can't complain too much, anyone who didn't already know would never guess that I have cancer - I look just like any normally healthy person. I won't lie to you, it hasn't been easy, and septis is certainly a complication. But this condition is *very* survivable nowadays, with a range of drug treatments available - there's a lot of hope. How's hubby doing now? And how are YOU doing?
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Re: Three years in - just found Cancer Connections!

Hi Flowerpot! Thank you so much for your response. It has certainly given me some hope now. We are so new to this and have no idea what to expect. My husband - Terry is now out of hospital and back at work. He works for himself so we do not have sick leave or super. He simply wants to feel normal. His symptoms were exactly the same as yours with the enlarged spleen as the reason we went to the doctor. Hindsight says now that he had a lot of symptoms contributing over the past couple of years that we can now put down to it. Cramps in legs, Weight loss, night sweats and fatigue and pain in bones. He always wrote it off as something or other, sport or work or heat of the day etc etc which is why it went diagnosed for so long. He is now on Sprycel/Dasatinib and off the Hydrea. We have had his blood test yesterday and hope for some positive results at least this week. Did you get alot of infections also? We have had a getaway booked for Melbourne this weekend and are really keen to go. He is feeling well at the moment. Do you think that would be wise given that some have told me the Plane could be an incubator for germs? His bloods are "bottomed out" apparently right now... (the term the dr used) I will ask the doctor also....... Although your advice I would seriously take on board. We don't want to stop our lives but are only just gearing up to kick the *** out of this cancer! Terry has never had a sick day and in the 30 years we have been together I have never taken him to hospital so this hospital stay was our first for him. We have a 22 year old daughter and a 16 year old son. A bit worried about the cost of all this treatment in NSW. Thanks again for your reply. We are struggling with it all but keen to get on with life also. It is really comforting to know that you are in remission??? Not sure what you mean about "4 years" but I get the "woo hoo'is positive so that's great. Really appreciate your time and advice. I fully understand if you are too busy to reply given the circumstances. I promise I will not bug you too much.! I know how it feels at them moment. We have had loads of long lost relatives all coming out of the woodwork. Everyone wants a piece of us right now but we just want to be normal. I guess that this is the new normal. If you don't mind me asking, did you have many stays in hospital over the past four years and did you manage to work and function ok? I am lead to believe it will be up and down from here on in. Thanks ever so much for caring.
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Re: Three years in - just found Cancer Connections!

I'm not in remission. And that is incredibly emotionally taxing to say, still. You don't really get remission with CML, not in the "cancer's all gone, no more drugs, I'm all good" sense. You do however get to live a normal lifespan these days, thanks to the new wonder drugs (of which dasatinib is one). I'm at the point that my bone marrow looks normal, and so they're not interested in testing it anymore (thankfully!!!). My blood still contains a non-zero amount of the BCR-ABL protein though, meaning I've still got CML. And yeah, I'm another one who never really got ill - I did get a triple whammy of bronchitis, laryngitis and sinusitis a few months before diagnosis, but that'd be because of the undiagnosed CML. That diagnosis was just over four years ago now - that's what I mean by the "four years in" bit. Where are Terry's bloods at right now? The hospital should have the basic counts, i.e. red blood cells (Hb, short for haemoglobin), white cells (WCC, white cell count), and platelets - the turnaround on the test for getting those numbers is super short (within the day). The biggie there as far as travelling goes is the white count, as they're the cells responsible for fighting off infection. Given he's just been treated for Septis, not sure I'd fancy travelling right now, but that said, if it's all paid for and you think it'd help you both mentally/emotionally, then yeah, maybe worth going anyhow... Tough call without knowing his numbers! I had one week in hospital when I was first diagnosed, then lots of trips in and out for tests (but all as day patient), and am now just being tested quarterly, no issues with infections but then I'm lucky like that; had a few weeks off work initially then straight back - in hindsight I went back way too soon and should've had more time off to recuperate and emotionally/mentally get my head around it all (and my partner says the same - we should've both had time off together!). But I wanted to feel normal immediately, and that included being at work - like I say, in hindsight it was the wrong decision, but heh. If you have a friend you can delegate as central phone person, do so - get everyone to phone them for updates - it'll really take that pressure off you. It is definitely very up and down, but if you're going to get a form of leukaemia, this is the one - it's got one of the best survival rates of all of them now. Something like ninety percent of people are still alive, and in fact thriving, at five years after diagnosis. Once you remember that half of the people diagnosed with this are over 65, so there's a fair few people diagnosed close to the natural end of their lives, then that's an absolutely massive rate of survival, with a pretty much hundred percent chance that Terry will ultimately be fine 🙂 If you can find a good therapist to talk to, and/or a good support group, then do so - talking, especially to people who understand, can really really help. I will caution you that it can be a bit weird at times, given that the CML treatment path is very different to the stereotypical cancer path, and that can result in feeling odd one out-ish, if that makes sense. As for cost, it really shouldn't be that much of a worry I don't think - dasatinib is on the PBS (go to pbs.gov.au and you can search for any drug), limited to $36.90 per prescription, so that's all you'll be paying for it. Yeah, that works out to a few hundred a year, which isn't ideal, but it sure beats the four to six grand the government pays per script! Hospital - I think pretty much everything should be covered by public hospital, but am not entirely sure about that - I went in as a private patient in a public hospital, and have top extras hospital cover. Of course, any time he doesn't work is lost income I s'pose, but you knew that already. Really, I think you have every reason to be positive - there seem to be remarkably few complications involved with CML; there are a few different choices of drugs if one doesn't work / the side effects are intolerable; the drugs are all covered by the PBS; and the general medical/scientific understanding of the condition is really quite good. And having just looked it up, dasatinib looks like by far the easiest of the three drugs - take at the same time every day, with or without food, your choice? Bliss! Speaking from experience, Imatinib can cause a ton of nausea if you don't have enough food with it, and Nilotinib requires you to fast for two hours before and one hour after every dose, nothing but water during those three hours. Twice a day. Ugh! That said, remember to give yourself time to flail and panic - even though the outlook is pretty darned positive, this is still a big scary shock and life change - you're all going to have quite the emotional rollercoaster, getting used to this. And that's fine, normal, expected; allow yourself the time and space for those emotions. Just vent outwards to friends, rather than onto Terry - I'm guessing he'll need to know that he can lean on you...
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Hi Again With regards to his numbers..... Yesterday we got a call from the cancer institute specialist who advised that his wcc has risen from 143 to 147 so he is resisting the dastinib. He was on Hydrea first. The doctors in Sydney have told him to start the Hydrea again along with the Dastinib last night. His platelets are 821? Our doctor is on holidays right now. We are heading of to the GP this afternoon but still keen to go away. Thanks again so much for your advice... I so appreciate it and I love your name "flowerpot" Such a breath of fresh air. I am taking on board what you say and believe that there is hope for us to live out a long happy life. So glad you are feeling well. Do you still get any side effects from the meds you are on. BCR-ABL I am still yet to learn about. Enjoy your weekend.
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Ok, potted summary of CML coming up. The root cause of CML is a mutated chromosome, called the Philadelphia chromosome. No-one knows why, but in we 'lucky' few people, rather than a normal chromosome, we wind up with this not-right version at some point in our lives (it's not inherited, the body just seems to get it wrong). From that, the body makes the BCR-ABL protein, known as "the evil protein" in this house. This is the thing that sends out the signals to do things like make those squillion and three useless white blood cells - all the symptoms basically. The out-of-whack red blood cell count (Hb), white blood cell count (WCC), and platelet count are all as a result of all that, to put it simply. Some labs use slightly different numbers, but 'normal' i.e. typical numbers for bloods would be: Hb 115 - 150 WCC 4 - 11 (can be as high as 18-19 if fighting off flu etc) Platelets 140 - 400 Double check that your hospital is using the same scale as those numbers because otherwise my advice and thoughts will be different! Now for the drugs: Hydrea is a good all-purpose blast-everything chemotherapy pill. It's not used specifically / just for CML, it's used any time that they need to get the WCC *down*. That's why you have to be very cautious with it - I was told to try not to touch the actual pills with my hands, and to wash my hands afterwards; my partner was strictly instructed not to touch them AT ALL - they're strong stuff, and could seriously hurt a healthy person. Seriously hurt. Imatinib (Gleevec), dasatinib (Sprycel), and nilotinib (Tasigna) are all targeted therapy TKI drugs used for CML. They are not as good as Hydrea at getting the WCC under control, because they're all about dealing with the BCR-ABL protein. "Resistance" when talking about imatinib/dasatinib/nilotinib means that they're not working on the BCR-ABL protein anymore (which can happen, but given there's three choices, isn't too much of a worry); them not working on the WCC isn't an issue, because there's drugs like hydrea for that. And now to Terry... Given his white count is still quite high, at 140-something, I'm surprised they took him off the Hydrea already actually. Not surprised that the dasatinib isn't controlling the white count though - it's not really designed to deal with it when it's that high (assuming of course that they're using the "normal is 4-11 and 143 is high" scale that I'm familiar with!). Being on the Hydrea and dasatinib sounds like the right idea - the hydrea will deal with the white count, the dasatinib will deal with the evil BCR-ABL protein (for a while I was on both hydrea and imatinib, for exactly that reason). Hydrea may deal with the platelets too, not sure. Now, as for your trip? Assuming they're using the scale I'm familiar with, 143 is a *high* white count. Most people are diagnosed with this condition with a count of twenty to thirty. Triple figures make doctors pull scared faces (I know because my count on diagnosis totally freaked my poor GP out!). And platelets? Well, like I say, 140-400 is normal, so over eight hundred isn't that great... When I had a platelet result of over nine hundred, my nurse cautioned me to look out for signs of stroke - platelets are the ones that clot over cuts and scrapes to stop the bleeding - because they stick together readily they can also cause blood clots, which of course can lead to strokes. Add in flying, and you're going to have to take an educated/informed risk if you're still set on getting to Melbourne. There is absolutely definitely hope, and even expectation, of a long long life together. But this is still pretty serious, and needs to be treated with caution - make him take it easy and allow his body time to heal, it's been through a lot lately! Side effects? Well, I have no personal experience with dasatinib, so can't really advise. On imatinib I had horribly achy joints, that's the bit I most remember. On the nilotinib I take now, I don't really have any side effects now - I did to start with, but they've pretty much faded away (it's still working though!!!).
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Re: Three years in - just found Cancer Connections!

Thank you so much for your info. That has summed it up for me and given me a much better understanding. More than I have had from any doctor. I am so grateful and really really appreciate your time and advice. Have decided to not go to Melbourne. Terry is feeling a bit off today and the risk factors to me are too high! We will simply wait until he gets better. I think we need to concentrate on that at the moment. Thanks again..... Big hug from me!
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No worries! It's a combination of things I think - one is that the doctors are complete experts in CML and so don't think to explain at the level that the average layperson (i.e. you and me!) need to have it explained in order to understand; the other is simply that my explanations are in nice black and white text for you to come back to whenever, without the extra stress of being in the hospital having to pay attention to a mumbling doctor (or is it just mine that mumbles? Drives me bonkers...). Good call on cancelling Melbourne I think, I totally understand the wanting to feel normal immediately, I was most definitely in exactly the same mindset, but right now time and ready access to medical attention to allow for healing and getting back to properly healthy is the go! And I truly believe he *will* get healthy - he's got really really good odds, sounds like he's got a great immune system and health generally (other than, y'know, the whole cancer thing!), and he's still plenty young for someone with CML. Hugs back!
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