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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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Hi Sara
Have only just seen your reply. Can’t quite get use to this site yet, things seem to get lost or I find it difficult to find them!
Hope you are keeping well.
I’m generally fine and just carry on as before, it has all knocked my confidence though. I do also get more tired, I also seem to have more aches and pains but then I don’t know if I would have had them anyway.
Apart from the trauma of the chemo nurses trying to get a cannula in, 4 times in one case, my treatment was not a problem.
Treatment is different for everyone,16 months is a long time do you know why they gave it like that?
My IgM paraprotein dropped from 49, and is still dropping a year after finishing treatment, and is currently 7.3 so a good response.
I don’t think of it as being in 'remission ’ as I still have WM and am currently back on W & W feel it’s more of an ‘intermission’ until the next time I need treatment, hopefully that will not be for years.
Makes you realise you need to make the most of every minute!

Ann.

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Hello Jacquie and welcome, I’m sorry you are finding it hard at times and even though we have different diagnosis I do understand that feeling of being unwell and constantly tired. I haven’t felt well since my diagnosis 4 years ago which has become normal but does get me down at times. Like you I try to stay positive most of the time but every now and then it gets too much. One of The things that’s helped me is repeating to myself ‘its ok not to be ok’ and not being hard on myself for being sad sometimes.
Also I have found that eating well really makes a difference, it wasn’t until my diagnosis that I really believed it could make a difference.

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Hi Lynne. You don’t say what sort of lymphoma your partner has been diagnosed with, but I was diagnosed with an unusual presentation of Hodgkins Lymphoma in 2007. I had quite a bumpy ride as mine was aggressive and relapsing, but finally after a SCT in 2009 my team managed to get rid of my unwelcome visitor and I am still here 10 years after finishing treatment.
Click on the 3 lines at the top of the page and this will take you to different topics which may be of interest/help you both, including ways to cope with treatment, fatigue, and being a friend or carer of someone with blood cancer. The support line is also there if either of you need to talk to someone who is not directly involved in your situation. Best wishes

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Hi Jacquie, A great big welcome and yes, this is just what our community forum is all about.
Working full time can be tough it was for me and I found it difficult to ask my needs and how both me and my company could both be benefit. A diagnosis is life changing and it really effected me emotionally as well as physically and that was really exhausting. Perhaps we cannot be positive all the time, I am far more emotional now. Please share, if you want to, about the tough times.

Hi, this is the one problem that is not logical and you cannot fix and that is very frustrating. Take care.

Hi Sarah and tess, @WrittleWife, Yes, this certainly is a community forum and with rarer conditions it certainly gets people together. Take care both of you and keep posting.

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Hi Roger, welcome to our community forum. I cannot help medically but keep sharing your fears, thoughts and feelings I expect many of us will relate to them, we are all here for you.

Don’t worry I still have challenges navigating this site, but it is worth it because with practice I am getting better with modern technology. I went for my blood tests today after 15yrs on W&W and I still get an apprehensive sick feeling in my stomach.

5 posts were merged into an existing topic: MGUS (monoclonal gammopathy of undetermined significance)

Hi my name is Colin i am 63 and have recently been diagnosed with CMML,i am still waiting to find out if it is stage 1 or 2.Lots of sleepless nights at the moment.

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