Refractory Lymphoma looking at Radiation... nervous about dose

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

I am Mike and I help out around our Lymphoma groups. 

For 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 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…… especially as part of my main treatments between late 2013 to late 2015 I had had 45 Radiotherapy zaps (5, 10 then 30)

Honestly these Consultant Radiologists know their stuff very well and I had complete confidence in them….. what we think to be high is seen by them as being necessary……. but you just need to talk this through with your Consultant as they are best positioned to explain why and let’s face it each situation is different.

You may want to join our General Non Hodgkin's Lymphoma…… support group as this is a safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

Click on the link above……. then 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.

Thank you very much. Im glad you made it. Do you remember how much Gy they used on you? 

In my situation both Dr's disagree with each other quite a bit on dose and treatment. My regular oncologist said that if I ask 5 different drs I'll get 5 different opinions. Apparently there isn't a solid standard care for refractory PMBCL. The drug they have me on now was approved in for B Cell NHL in Feb of this year. 

So while I know these drs are smart there certainly isn't a consensus.  

I only have a note of my 10 sessions of Total Lymphoid Irradiation used as part of my conditioning going into my first Allo (donor) Stem Cell Transplant…. 

TLI was focused on every Lymph-node in my body and used to kill off my immune system. 

Each session was 80 cGy……. It was so strong that when I went back to have my second Allo SCT 16 months later the effects on my immune system was still evident that it was seen as part of my conditioning for the SCT.