Has anyone here had a methylation test , I will explain .
Ive had my cancer since 2019 and had chemo yet it wiped me out , first day 5 reactions and from then on I didn’t understand my body or what was going on around me . My world vanished as I knew it . Once the carnage was over , I couldn’t understand why I suffered so bad throughout the process . I decided to seek help to understand as I have always had issues with medication .so I spoke to a scientist to help me . We discussed various medications and there is far too many types to have issues with them all so she said let’s check you . She explained the medication uses our folate cycle to enter and release from our bodies therefore she explained a test called a methylation test via dna which I did using a company called stride dna . Had the test which was 300 pounds and was a saliva test . The results came back and she explained that my liver don’t release toxins as it’s supposed too as mine is impaired meaning that I build up toxins from medication due to the liver not being able to release fast enough before the next dose causing me to have so many issues . I have given the report to my cancer team and had a discussion about future treatment which they have recognised my issues with my folate cycle and have now split one dose into 4 and the time scales between doses increased to allow my body to release the toxins and basically stop me building up toxins in my body .
i just wish I known this before hand as this could have prevented many issues I still have to this day . My life is now not the same and i seem to have lots of flare ups and have to live with the mess im in now .
Has anyone here had the test or suffered very bad as I did , it may be worth taking the test to check your body . Medication and doses is old and needs updating as the one size fits all approach is not correct our bodies are different.
hope this info can help anyone .
Hi Tatty and a warm welcome to this little corner of the Community.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of slow growing Skin T-Cell Non Hodgkin’s Lymphoma (Skin (Cutaneous) T-Cell Lymphoma)
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) very type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I can’t say if I have had a methylation test but leading up to….. and during my main treatment years between late 2013 to late 2015 I had some extensive tests done in preparation for my treatments…….. this was due to me having to be treated for my 2 rare T-Cell NHLs at the same time (See my story).
I have a life long, severe drug allergy so great care was taken to ensure that all aspects of the possible side-effects of some of the very strong drugs that were going to be used during my treatments…… especially during my 2 Allograft (donor) Stem Cell Transplants were accounted for…… and procedures put in place.
But I am over 10 years out from my last treatment, I turned 70 last Nov and I doing great.
Always around to chat.
