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Hello new member here

Hi everyone, hubby just been diagnosed with Chronic phase CML after feeling tired and experiencing pain in shoulder and under left rib. Went to doctor straight away had bloods done on the Tues, received a call at work next morning telling him it looked like Leukemia and told to go to hospital straight away. I took him to hospital and the doctors told us straight away that they were certain it was CML. We had never heard of it and we were in complete shock and disbelief. Within two hours the hospital oncologist did a bone marrow biopsy while I held my hubby's hand, I sobbed in absolute despair trying to be strong for him. They did a chest xray and CT scan and admitted him to the ward and started him on IV antibiotics and fluids as they thought he had some underlying infection going on. That night they started him on Hydrea to bring his WBC down and enlarged spleen ( that was the pain he was experiencing). He was released after a week and once we got the bone marrow results he started on Nilotinib on day 10 and stopped taking the Hydrea. He has been taking Nilotinib for three weeks now and is doing well. We have no BCR-ABL results as of yet. When we saw the specialist at his very first appointment he told us all his bloods were good and his liver function etc. His WBC had come down from 336 to 36.9. He wouldn't tell us anything more and his next appointment is Dec 10. That's the rollercoaster of a ride we have been through these past few weeks! I have been reading through the vast amount of information on this site especially the forums where I have been able to educate myself and my hubby and gain valuable information to help us gain an understanding of CML and how best to support him and his health. We spent the first few days crying together, thinking of what to tell the kids, reevaluating what's important to us and so on. I have spent ( and still do) many days and night crying, feeling alone and exhausted and this site has been an absolute lifeline and valuable support to me. I can't thank you enough for this as it has reassured me and my hubby and given us so much insight into what the future will hold for him and us as a family. Without this site I definitely wouldn't have coped as well as I have and my hubby is very appreciative of the information I have been able to source. So I will shed a few tears of gratitude as I write this and thank everyone for their input into this valuable means of support. We are orginally from the UK but moved to Australia 10 years ago. Apart from our kids we have no family here, all our family are back in England, so we have felt very isolated and alone which makes being apart of this group even more important to us. Thank you and take care, Sharon

Hi Sharron and family, just read your story involving your husbands recent diagnosis and confirmation of having Cml, every thing you described was as if probably 99% of us “members” had written your description, only I had no idea where my spleen was until I was diagnosed! there are people who use this site that will help your husband and you with any issues involving Cml I’ve been a “member “ for 5 years and read Cml support every day, we’re all with you with are support.

Hi Sharon 

I am so sorry to hear of your husbands diagnosis and the hurt your family are going through. 

As a newly diagnosed member to this site 4 months ago I feel for you and your family. 

The shining light at the end of this tunnel for you and your family is that due to the breakthrough in TKI medication several years ago is that it really is no longer the life threatening condition it used to be.  

It is very highly probable that apart from taking his medication every day that he will live a healthy and very long life. The vast majority of people on the original tests over 10 years ago or more for the TKIs are still here today 

I personally have no doubt that it will not be the CML that I will die of but old age 😀

It can be a scary time for sure but a little education and knowledge from sites like this will put your families mind at ease.  

 

Kindest regards 

Mark 

Hi Dusty,

Thanks for responding to my first post. We definately feel in a better place being a part of this group with so much information available and we truly appreciate the valuable support. It's been an emotional and stressful past few weeks but we are much more positive and getting used to our new normal.

Take care,
Sharon

Hi Mark,

Thanks for responding to my first post and for your kind and encouraging words. We have been through a rollercoaster of emotions and things are starting to settle and we are getting used to our new normal. Hope things are going well for you as you are pretty new into your treatment too. It is truly amazing what these TKI's can do, I hope you are traveling well and that they haven't been too stressful on your body re side effects and so on. My husband is going well atm 3 and a half weeks in on Nilotinib. Experienced some thigh pain in the first few days but that's gone now. Time will tell I suppose but right now we are taking it one day at a time and are very positive about the future.

Take care,
Sharon