Hi I’m John and I was diagnosed with the MCL in December 25 and Started R-CVP in July 2026. I will start My next course treatment later this month., My side effects of the Treatment to date is extreme lack of energy and neuropathy in hands and feet caused By VIN CRISTINE, Which is been omitted from treatment three and all Future treatment. Just wondered if any other Forum members had suffered with similar side effects.
Hi John JT41and very warm welcome to this corner of the Macmillan Community although I am sorry that you had to find us and especially sorry to hear about your MCL diagnosis.
I am Mike and I help out around our Lymphoma groups.
I don’t have Mantle cell 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’ my be different I most definitely appreciate the challenges of this journey rather well……. I have also been diagnosed with Asbestosis in 2012 and Prostate Cancer this April past.
I had 6 cycles of R-EPOCH…… the O in the regime is Oncovin……. another name for Vincristine.
My R-EPOCH was full on as I was in hospital for 5 nights/6 days on my 2 IV pumps 24/7 for over 120hr so I had about 96hrs of Vincristine each cycle……
I was warned about the Peripheral Neuropathy but as my 6 cycles of R-EPOCH that included the Vincristine was being used to open the door for me to go on and have 2 life saving Allograft (Donor) Stem Cell Transplants……. there was no way they would reduce the full impact of my chemo as this could have had a significant effect on me being able to have the transplants……
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from Oct 2013 to Oct 2015 was rather complicated See my story so I suffered Peripheral Neuropathy for those 2 years…… and for a year after…….. but it all came good.
As for the Fatigue….. it’s a chicken and egg thing. The less you do the more the fatigue will build up….. I know it’s counterintuitive but based on my experience it’s true. I aimed to have short walked after every meal - even in hospital I took my IV trolley for walks round the corridors….. yes I would nap during the day but my wife always woke me up after 45 mins to ensure that my night sleeps was not affected.
But I am coming up to 11 years out from my last treatment, turned 70 in November last year and I am living as good a life as any fit and healthy 70 year old can live.
