Lymphoma

Hi Pjpumpkin and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your ongoing 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.

   Hodgkin's Lymphoma

   General Non Hodgkin's Lymphoma

   Follicular Lymphoma

   Diffuse Large B-Cell Lymphoma

   Mantel Cell Lymphoma

   T-cell lymphomas

   CLL, SLL and HCL

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.

Going through the same experience. Currently waiting for the formal results of the biopsies but medical team are already convinced, just need the results to figure out what they can do about it.  Very happy to chat and  go on this journey together if it helps.

Yes it would be good have someone to go through this with my cat scan is this afternoon . I’m so anxious . How did yours present and hope you get the results soon . The waiting part is so difficult isn’t it .

Once you have a clear diagnosis do join the best group for you type of Lymphoma as you will connect with a wide range of people who have navigated the journey.

Good luck with the scan.  In my case it was all triggered by a chest x-ray that was the result of some pain in my side/back.  Then followed CT, PET, biopsies and now the wait....

The wait is tough. Eve ry emotion all at once . Do you the type of lymphoma you have yet . I hope we both get the process moving soon . I have a special needs teenager who really depends on me so trying to be strong and remain positive which is harder on some days . How are you coping emotionally . 

Consultant appt tomorrow as one of the biopsies is back and hope to find out more then.  So far I am kinda numb to it all, still working a bit from home and staring at the TV, curious how I will react to the reality of a diagnosis tomorrow.

Let’s look for you to get some answers and a plan to move this forward.

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Wishing you the best of luck tomorrow x

Sending love and support for tomorrow,