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! ... View more

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. ... View more

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. ... View more

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. ... View more