Starting chemo after 7 years active surveillance

Hi Coogs and warm welcome to the Macmillan Online 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. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

I was on Active Monitoring for 14 years before I needed chemo so understand the journey you are now on

The online community is divided into dedicated support groups so can I recommend that you join our Diffuse Large B-Cell Lymphoma support group. This group is a safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To join the group first click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

You can also scroll through other members posts and click “Reply” to get involved.

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.

Hey Mike, thanks for the reply.  I'm sitting at home waiting for a phone call from the ward.  I work at the hospital I'm going to be treated in (in a different department) and, frankly, I dont have much confidence. My consultant has insisted on telephone consultations for the last 3 years and, despite reassuring blood results, my disease has transformed without them noticing in that time.  I know I've got to stop dwelling on that and just get on with getting better but I'm finding it hard. 

Hi againCoogs let’s look for you to get this started soon.

When my condition kicked of in late 2013 (you can see me story through the link at the bottom of my posts) a new biopsy was done and although the results were inconclusive it looked like my condition had transformed, but the biopsy was definitely showing ‘signs’ of a more aggressive type of lymphoma……. I have never had a blood results that indicated anything to do with lymphoma - this is the crazy thing about lymphoma - you think a blood cancer should show up in bloods….. not the case with most Lymphomas.

Your story is unfortunately rather normal - this is lymphoma for you. With over 60 types of lymphoma with some very rare like my one (7 in a million) even the experts are caught out.

I see you have joined the Diffuse Large B-Cell Lymphoma so when you are ready do introduce yourself by putting up a post and this would be a good place to continue our concerns allow other group members to join in.