New here? Feel free to introduce yourself here šŸ‘‹

Hi Corrina

I was diagnosed with AML in 2015, its always nice to ā€˜meetā€™ another patient (though I know it sounds odd to say its nice but hopefully you know what I mean)

I was treated at Lincoln hospital in Lincolnshire so I was the only patient as its a rural area and I am quite isolated here so this forum and social media has been a godsend to me.

How are you feeling at the moment? Donā€™t worry about being open and honest here because I have found it very beneficial, from my experience you canā€™t always do that with loved ones.

As you say treatment is very tough, I remember it very well, its still very fresh in my mind. nothing you are feeling, dealing with physically or emotionally is unusual and what I mean is it can feel like you are the only one and some of the feelings are ā€˜sillyā€™ but there is probably nothing I havenā€™t felt or thought.

Please feel free to ask me anything, Iā€™m happy to use my experience to help if I can

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Hello everyone. My name is Simon (41 with wife and two young daughters) and I have just been diagnosed with CML. I have started treatment with Imatinib and hopefully this works well for me in coming weeks. Been a difficult few days speaking to family, friends and work colleagues, but feel fortunate that I have a condition that has an excellent drug to manage it. Fingers crossed everything goes well in the near future.
Thanks to the Bloodwise team for the excellent information and booklet which explains a lot about CML. Will certainly be posting any questions on here and looking for shared experiences with CML and Imatinib in due course.
Regards, Simon.

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Hi Simon, a great big welcome to our community forum, thanks for introducing yourself. When I was newly diagnosed I found it very difficult to explain to family, friends and work as I was still in shock and could not explain what I did not understand myself. I am glad the Bloodwise team have been there to help you, I have also found them very helpful. I found I became ā€˜Erica, with leukaemiaā€™ for quite a while. I actually found it was most difficult with work as I had always been the one never to have a day off sick, being efficient and reliable. Suddenly my bosses realised that they did not really know what I did to get the results. They worried about my mortality and then started holding meetings without me and taking all the proactive roles away and leaving me answering the phones. I think you might find we all share similar fears, thoughts and feelings no matter which blood cancer we might have. How have you approached telling your 2 young daughters and how have they processed the information?

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Welcome Simon, hope you find being part of this forum helps with dealing with your diagnosis. I know its helped me. Pleased you have found the right information so far

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Hi and thanks for the warm welcome. Iā€™m currently at home for 10 days between cyclesā€¦ feeling extremely well considering, and doing normal things like the school run, cooking, meeting friends, housework etcā€¦ canā€™t believe I have to have more treatment and weeks inside the hospital when I feel so good ( I do get a bit tired) but I know its not all over yetā€¦
After the first cycle I had several bad drug reactions and couldnā€™t even walk so Iā€™m so grateful that Iā€™ve bounced back well from the last cycleā€¦ Just hoping I can keep it up for the next coupleā€¦
Wishing you all good recoveries!!
X

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Hi Corrina, I am interested in how you are doing and feeling and what it is like being home and having to take up your household and maternal roles? How old are your children and what have you told them and how are they too?

I am Geoff, aged 80. I have had a MPN called essential thrombocythaemia for about 5 years and for most of that time my illness has been very well controlled. Just recently I have noticed that the treatment (htdroxyurea) seems to have turned against me and is destroying my red blood cells. There does not seem to be a good choice of alternative treatments. Has anyone had experience of anagrelide or Interferon alpha?
I suppose blood cancers are not the only cancers that become more aggressive over time, but it means you can never really relax.2019-05-23T00:00:00Z.

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Hi Geoff, I am so glad you have joined our community forum. I think you are right that you can never really relax, I know even after 15 years I get anxious around the time of medical appointments. I wonder if you have talked to your medical team about treatment options and what they said. I have CLL and do not have any experience of those treatments you mention but what I have found is that we all seem to share the same fears, what ifā€™s, thoughts and feelings. If you would like phone support or advice the Bloodwise support line is there for you and their contact details are 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at support@bloodwise.org.uk. We are all here to support you, but I wonder if you have any family or friends for support?.

I finally got my consultant to phone me back a few minutes ago! My family wish me well but they donā€™t know what it is like to have a condition of this sort, they are far too healthy!

The consultant told me that anagrelide (which I thought the best of a very bad bunch of alternative drugs) was ā€œnot the best for someone of my ageā€. I have to try a lower dose of the existing medication for a month.

Jumbo4

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Thanks for your response, I had to chuckle when you said ā€˜they are far too healthyā€™, I think that is so true. Until you experience something I find you cannot understand it. I have found I have sometimes felt so isolated with my condition. Also blood cancers are often treated so differently to some other conditions which are immediately treated with medication or an operation and the patient is ā€˜curedā€™ and everything goes back to ā€˜normalā€™, which is so much easier for everyone to deal with. Perhaps this month will give you an opportunity to compile your fears, questions, thoughts and feeling to ask your medical team. Please keep posting, we are all here for you.

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Tony, I have only just seen your post from November 2018, because I have only just joined this forum. I have had essential thrombocythaemia for about 5 years and am JAK-2. I had no trouble till recently, when I began to find my red blood cells disappearing. I hope it is caused by being too ambitious, taking too much Hydrea to drive down the platelets! But if not, I may have to consider Interferon, and since you have tried it, I would be glad to know whether you found it tolerable. I am older than you!
Geoff

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Hi Geoff

You really need to speak to your specialist, Iā€™m not sure whether you are saying that you are taking too much Hydra as a personal choice or whether he/she is over-prescribing.

As for Interferon/Roferon, itā€™s now regarded as old science, in France and Spain the specialists no longer prescribe it other than for conditions it was originally intended for. Back when I took it, it was all special licence as it was not then regarded as properly tested or efficacious for MPDs. And it should only ever be a short term medication, again, back when, being on it for years as many of us were, was totally untried and untested and the results were generally horrendous.

Were I in your position Iā€™d ask my specialist if I could come off the Hydrea for a while to let your red cell count improve, unless your ET is rampant that shouldnā€™t be an issue.

Hope this helps - Interferon, never again but thstā€™'s my personal choice.

Regards

Tony

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Hi Erica, thanks for your message. My boys are 12/10ā€¦ they still need their Mum and I am so happy to be home and feeling well enough to look after them, drive them around, take them out etc Of course Iā€™m doing more housework than I should but I find doing ā€˜normalā€™ things is very good for my mental strength.
Iā€™m lucky to have a strong network of local Mum friends who add humour to my situation.
Iā€™ve also found that making an extra effort with my appearance really helps as people give compliments which helps boost my mood and can reassure me that I can get through this treatmentā€¦
Iā€™m going back in on Wednesdayā€¦ my last bone marrow result was delayed and I am nervous about the possibility of a stem cell transplant. My sister in Australia is a match which is good to know. She was so excited to find out this news as she wants to be able to help in some way.

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Thanks Corrina, you certainly seem to be doing all the things that you would be advised to in order to keep you mentally and physically in a good place. Please do keep posting what it is like to be you, the highs and lows, perhaps we are the ones that really understand and we are also here to support you.

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HI Corrina. Children always need their Mum (mine were 16, 24 and 25 when I was diagnosed), but young boys tend to keep a lot bottled in. My youngest was doing A levels and applying for universities as I was undergoing treatments. I kept school informed of changes by email. My son had a teacher that had a great rapport with him, and was able to keep an eye on him, for which i was grateful.
I had my own stem cells transplanted as there was no match for me, but the Red Cross in Australia were fantastic when my youngest brother was tested to see if he was a match.
Good luck with your visit on Wednesday. let us know how you get on.

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Iā€™m Andrew a 62 year old retired computer systems engineer. A close friend of mine died from AML in 1996. A while ago but his passing still affects me. He was 35 and left 3 young children. I was best man at his wedding and god parent to two of the children. Iā€™m riding the London Ride for Bloodwise and have riden for Bloodwise before. So thats why Iā€™m here.

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Hi Andrew, thanks so much for joining our community forum. I am so sorry to hear a close friend of yours died from AML in 1996. I am not surprised it still affects you.
The Bloodwise support line is there for you on 0808 2080 888 to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message - they say they will get back to you within one working day. Thank you so much for riding the London Ride for Bloodwise it is really appreciated. Please keep posting how you are and let us know how your training is going and the day itself.

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Welcome to the Bloodwise forum @ANDREW . Thank you so much for sharing with us what brings you here. Iā€™m so sorry to hear about your close friend. I can only imagine how devastating that must have been for you and how tough it still must be.
As Erica says, weā€™re here to support, and we also have a Bloodwise support line too.
Thank you for all you do for Bloodwise, itā€™s people like you that make the research into blood cancers and newer, kinder treatments possible.
How is your training going?
Alice

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Welcome Andrew, and thank you for doing Ride London. Are you still in regular touch with your friendā€™s family? I am sure they will still enjoy hearing about their dad through your eyes, and some of the adventures you had together, conversations about when he knew they were on the way, and how he felt when they were born. Hope the training is going well x

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Thanks Tony for your advice. I have taken a decision myself to cut the dose of Hydrea a bit but not to stop it altogether.
Interferon certainly looks nasty. I have wondered about using mostly Hydrea with a minor contribution from anagrelide. I notice the published blood figures look good but drop out is high.

Geoff

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