What is radiation therapy like?

Hi Michigan and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your FL diagnosis.

I am Mike and I help out around our various Lymphoma groups……. You have been rather unlucky to have had 2 cancers but as FL is a slow growing type of NHL you could have went some time not knowing you had it.

I don’t have Follicular Lymphoma but 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 NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Between late 2013 and late 2015 I had 45 zaps of radiotherapy (5, 10 and 30) and apart from the fatigue of going up and down to the Radiotherapy Unit every week day, some dry skin I had no real physical issues.

For me the setting up was the worst part as it had my laying on my back for a long time secured by my moulds…. the moulds were ok but as I have Spinal Osteoarthritis it was painful on my back and neck.

The one significant side effect of my 10 sessions of Total Lymphoid Irradiation was my immune system was basically switched off for 16 months. The TLI was used as part of the treatment used to switch off my immune system in preparation for my first Allo (donor) Stem Cell Transplant in June 2014…… this failed 6 month later so I went back for a second Allo SCT in Oct 2015 and the TLI was included as part of my preparation!!!!

Let’s see if any group members have had the exact same radiotherapy treatment.

Are you in the UK?…..

Always around to help out

I'm in the United States.

Just asking as there may be treatment differences between the UK and the USA as very high percentage of community members are from the UK as Macmillan Cancer Support is a UK based charity.

I'm aware. Still it seems like the most inviting forum. And it never hurts to see options that you might not be aware of. 

You are totally welcome to be part of the forum and let’s look for others to pick up on your post who have had the exact same treatment

I guess I'll reply to my own post, so that anyone with similar questions may get some answers. About 10 days ago I had my simulation, where they line you up for future treatment. My lymphoma is in my abdomen, so they made a mold of just my feet and lower legs to get me in position for all the treatments (12 total with 2 gy of radiation at each). Tattoos were put on each hip and my stomach (no, they don't hurt--they look awful at first but it is just the ink that didn't go under the skin. That wears/washes off leaving a tiny dot). That process took about 45 minutes.

Today was my first treatment under a Varian Truebeam linear particle accelerator. Lying on my back, it rotated around me. It made few noises and the table I was on moved a few times. I felt nothing, saw nothing, and smelled nothing. Including the set-up time, it was all over in 15 minutes. I understand I'll get fatigued over the course of the treatments, but its way better than a laparoscopic colon resection. 

Hi Michigan, sorry I missed your question before, my husband has FNHL, it seems the UK and the US have more or less the same treatment, the same as you his was found whilst a ct scan for his kidney cancer also they found stomach cancer at the same time, they dealt with the stomach cancer by taking his stomach out then a few months recovering from that he had 12 radiotherapy for the lymphoma which was in his groin, he was fine all through the radiotherapy, maybe a bit tired towards the end as it was an hours trip e/w to the hospital, he now just has 6 monthly phone calls for his lymphoma and stomach ( a cyst was spotted on his spleen a while ago which their keeping an eye on) He’s doing fine, he’s 82. Good luck with your treatment x

Hi Michigan and thanks for the update.

I had 45 radiotherapy zaps on my 2 years treatment. The set of 10 zaps of Total Lymphoid Irradiation with each zap being 15Gy…… The 2 main side-effects were the developing fatigue…. but the most challenging was the long term effect on my immune system and bone-marrow……. resulting in 16 months with an immune system that was not doing its job.

10 zaps of 15gy each. Wow, that is a lot. I feel for you. But it's strange how things can sometimes work out. I stupidly avoided doctors and colonoscopies until I was 67. On my first colonoscopy they found colon cancer. T2N0. But if I never had colon cancer, I never would have found out about follicular lymphoma and couldn't have caught it at Stage 1, Grade 1. So far, CT DNA test shows no circulating colon cancer cells (I understand the test doesn't work for lymphomas). But radiation does work for FL and now at age 68 five or 10 years without reoccurrence sounds awfully good.