Diagnosed 2 weeks ago

Hi Just peachy and a warm welcome to this corner of the Community although I am sorry to see you join the group. I am Mike and I help out around our various Lymphoma groups.

I don’t have Mantle cell lymphoma but I was diagnosed way back in 1999 at 43 with my type of Low-Grade NHL.

Your type of CTCL slightly more rare than your MCL and it remains incurable. Then in late 2013 a more aggressive type of NHL (PTCL-NOS) came along with me now reaching Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Good to hear that your MCL is Low-grade at the moment but you may well know that it can become High-grade.

I am assuming that you are on Active Monitoring (Watch and Wait)…… I was on Active Monitoring for about 14 years before I needed full on treatments….. but as an encouragement I am 8.5 years out from my last treatment, I turned 68 last Nov and am living a great life.

Fatigue can indeed be a problem but as you are only 2 weeks into your journey and the stress of the diagnosis can be mentally and physically challenging. What to do?….. eat a good balanced diet, keep as active as you can, get out in the fresh air and Lear as much as you can about your MCL.

Let’s look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions.

Always around to help more or just to chat

Hi. Sorry to hear the diagnosis - good it’s low grade.  I was diagnosed January 2023 with MCL Stage 2A and once you get over initial shock, it was decided to do watch and wait which lasted until April this year when I started on a new trial called Traverse which is a targeted therapy they are testing. During watch and wait, I felt a bit of a fraud - the cancer was progressing yet not been treated - counter intuitive- but it also gave me time to get used to it, learn to pace myself - as much Excercise as I could but then getting good quality rest too. That kept my mind positive which seemed to help overcome the fatigue as the positivity cancelled out some of the fatigue at least in the mind a - a bit of mind over matter I guess. Good luck and let me know how you get on and make the most of this new low grade phase. 

1. Hi Mike thanks for getting back to me, yes I'm on active monitoring, have only had my 1st appointment to find out my diagnosis so have more questions when I am back in couple of weeks, it's kinda scary knowing that it can just change and I don't know if I can do anything to prevent it from happening. Hopefully it will stay low grade for a long time yet.

The early days are confusing so getting clear information is important - these links may help you get this information

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Yes it is scary, you can see my complicated story through the link at the bottom of my posts but it’s ever so important to get that on the whole Lymphomas….. even the rarest of the 60 types and sub-types of Lymphoma can be treated.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available and compared to the other cancers, like me back in late 2013 when I reached stage 4 - it made no difference to my outcomes.

Thanks for info I am grateful, on the whole I'm a positive person and am thankful this is treatable. 

You may notice that all the link I use are taken from Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with others who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

You have had quite a journey, read your story,  amazing what you have come through.

We just do what needs to be done to get out the other end 

Hi Just Peachy, you're not on your own here! I was diagnosed with MCL at the end of 2020 and was on 'watch and wait' until October 2021, by when I was on verge of becoming anaemic and increasingly tired. I then had an 18 week course of chemotherapy followed by 12 courses of Rituximab over 2 years, which were completed in February. So, I'm still here with no medication!

Each individual will respond differently I'm sure, physically and emotionally. I can only speak for myself when I say that I found it best to work with my condition, my doctors and my treatment and not fight against it. I found it helped me to get on with my life, although accepting my condition and understanding that my energy levels would drop. 

Treat yourself kindly; the more you try to force your body to undertake activities it is no longer up to, the more tired and frustrated you are likely to become. Do everything you can .... don't try to do the things you can't.

All the best, 

Hopalong

Hi Hopalong, thanks for your message hoping to avoid chemo for as long as possible, scares the hell out of me, I try to listen to my body and rest when I know I need to although I am very active and stubborn, and I've 10 year old twin boys so don't get much peace lol.