@sajdee Welcome to the forum Sara, reading your blog for Rare Diseases Day was very moving, thank you for sharing your story. I’ll link it here if anyone hasn’t had chance to read it - https://bloodwise.org.uk/community/rare-disease-day-wm-waldenstrom-macroglobulinaemia
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Hi Lyn, a great big welcome to our community forum, thanks for telling us about your diagnosis, I am interested how are you coping emotionally and physically? Take care.
Hi Sajdee, I am not surprised your treatment left you feeling bloomin’ awful. How are you feeling now emotionally and physically?
Hi. I’m Adrian. I’m 48. And in May 2017 I was diagnosed with CLL during a hospitalization for pneumonia. I’ve has surgery twice when the cancer grew in my tonsils, and from October 2018 to March 2019 I received FCR as part of the FLAIR trial.
I still suffer quite badly from fatigue at the moment and so am in long term sick leave.
If you are interested you can read the story of my first year after diagnosis which includes how my faith was challenged and became a comfort to me.
I have Scottish heritage though live in London. This is a picture of me wearing the kilt (it’s actually the only time I have done so!)
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Hi Adrian, welcome to our community forum, I was diagnosed with CLL in 2003. A lot has happened to you and you have also had a lot of treatment since May 2017, let alone the emotional toll on you, perhaps it will take a time for you to build yourself back up, although I think many of us suffer from fatigue in varying degrees. You will find a lot of posts on the subject on this site. I have really got to know myself since diagnosis and my fatigue comes on either immediately or up to 48 hrs after I have overdone it emotionally or physically and I do not deal with what personally stresses me well. The diagnosis really does turn your life upside down and I also now know what is a comfort to me which is my music anything from the 60’s on and lots of things that are free in life like my priceless family and friends, nature etc. Thanks for your blog and the lovely photo, keep posting.
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@Adrian Hi Adrian. You definitely look great in a kilt. My son-in-law wore one for his wedding, and has a family one which he wore when a boy, and has been worn by my grandson.
You have certainly had a lot to deal with and will take quite some time to recover from. Just take little steps, and rest when you need to. Wishing you all the best and I hope you find something to help on the forum
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Hi
I just wanted to say that I have WM too. I was diagnosed when I was 50 as well. Such a rare cancer. I was told it usually affects men in their 60’s!! I am now 64. I have had two rounds of chemotherapy. The first one was a tablet form and that kept the WM at bay for 9 years and then in 2015 I had a six month round of a slightly more potent form.
I am new to this site and have never posted before but your message made me want to get in touch to give you hope. I have never met anyone with WM and don’t expect to! It’s just good to know that someone else is out there who has the same condition and is still doing well so I hope this message gives you comfort and encouragement. Take care and all the best x
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A great big welcome to our community forum. I am so glad you had the courage to post. I have CLL and I was diagnosed in 2003 at the age of 53. I have been a very lucky girl and have always been on watch and wait (active monitoring). Obviously for you it must be a great comfort to have found someone else with such a rare blood cancer. However what I have found is it often does not matter what our blood cancer might be we seem to share similar fears, ‘what if’s’, thoughts and feelings. How have you been emotionally?
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Hi Erica
Lovely to hear from you. Yes we all do have the same fears and worries whatever name our blood cancer is called. I have had quite a long time to get my head around my illnesses and I really do try to take every day as it comes. I have a wonderful support network in my friends and family. They all help to make life a little easier for me. I am quite a positive person. Thank goodness!
Take care x
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Welcome Adrian! Please do share your story and experience, although many people with CLL are on watch & wait, some like yourself need treatment and hearing from others who may be in a similar boat is so helpful and important. Feel free to start a conversation! Take care - Dawn
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A post was merged into an existing topic: MGUS (monoclonal gammopathy of undetermined significance)
Hi Joe. a great big welcome to our community forum, I find it supportive and I hope you will too. I cannot help you medically and as I really realised as I read you post we all very unique, special, complex beings and today, if you were to ever need treatment it would be to your particular history and needs. However, as I also realised when reading your post is we all seem to share similar fears, what if’s thoughts and feelings. I did find writing all my questions to and answers from my medical team down helpful and this forum has really empowered me to make sure I do ask everything I want to and those follow up questions as well. If you feel the need to talk to someone at Bloodwise their support line details are Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm on 0808 2080 888. Please keep posting how you are, feeling and thinking.
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Hi my name is Lynne and my partner started his chemotherapy last week for lymphoma. I know the hospital is very helpful but would be good to talk to people who are in the same boat as us feel quite stressed and worried for the future to what to expect as the months go by thanks emphasized text
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Welcome to the community lynne, I don’t have lymphoma but everyone with blood cancer tends to have similar worries about the future, hopefully someone with lymphoma will reply to your post, but in the meantime please feel free to share your story so far.
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Hi. I’m Jacquie. I had a stroke last year and was then diagnosed with Essential Thrombocythaemia. Bone marrow biopsy in December revealed Myelofibrosis. I’ve generally been v positive and went back to work full time in January but tough times at present. Feel ill most of the time but tests don’t show anything. So frustrating as when I feel well I live normally and enjoy life. It will be good to join the forum and connect with others.
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5 posts were merged into an existing topic: MGUS (monoclonal gammopathy of undetermined significance)
Hi Lynne, a great big welcome to our community forum. I think you and your partner have both received a diagnosis that has probably rocked your worlds, so it is very natural that you, as the wife and carer will feel stressed and worried about the future. I expect you will see a lot of post about the fears and stresses we all seem to go through. The Bloodwise helpline is available 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 on 0808 2080 888. Take care we are all here to support you both so keep posting how it is for you.
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Hi Tess
Many thanks for your message. I myself am new to the forum and only just working round how to use it!
Yes us WMer’s seem to be very rare don’t we? It gives me great comfort and strength knowing you are doing well despite your treatment. Here’s to keeping all things crossed for further development of treatment for our condition.
You are more than welcome to chat at any time.
Sara x
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Hello, I have AITL, is anyone else suffering with this cancer currently or recently. I am half way through my scheduled Chemo and wonder if there is anyone out there who may find it useful to compare experiences.
Rogerh
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Hello @rogerh and welcome to the forum, I am sorry you find yourself in this position but hope you find this place helpful.
I was diagnosed with AML in 2015 and did have chemo too though not sure how it compares. But I am sure there will be some ways I can offer support.
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