Low Grade Non Hodgkin

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Hello - I’ve just been diagnosed with low grade non-Hodgkin lymphoma and would like to understand more about the Watch and Wait process and also what I should be looking out for. Thanks in advance. 

  • Hi  and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis. I am Mike and I help out around our Lymphoma groups. 

    For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.

    There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.

    General Non Hodgkin's Lymphoma

    Follicular Lymphoma

    Diffuse Large B-Cell Lymphoma

    Mantel Cell Lymphoma

    T-cell lymphomas

    These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    Have a look at the group list above…… then click on the link that best fits your type of Lymphoma……. and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike - thank you so much and thanks for letting me know about your experience. I found out today that I don’t have Mantle Cell but I am waiting on details of the specific type. Thanks for what you do!  Best for now. 

  • So most likely the General Non Hodgkin's Lymphoma group would work.

    But the Follicular Lymphoma may be the one as Follicular is the most common type of Low-Grade NHL

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Me too also on watch and wait I’m only 33 so it’s all very scary.

  • Hey - how are you doing?  I have sort of got my head in the game on this now.