I'm new to this group and have had radiotherapy for Malt lymphoma in my lung. Now have some symptoms/ side effects and don't know whether to wait until my next review or contact the clinic now. I don't have a designated contact at the clinic.
Hi Rastrick crafter 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.
My advice is call this into your team and express your concerns.
Over my 25 years of treatment I have had 45 zaps of radiotherapy (5, 10 then 30) and the effects of the treatment can last for a rather long time.
There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but you may want to join our……
General Non Hodgkin's Lymphoma
…… support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Click on the link above……. 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.
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.
