Hello all,
Following an unidentified possible viral infection that started in June 2024 and totally floored me, I was diagnosed with Mantle Cell Lymphoma early December 2024. I had a lot of blood tests, scans which revealed an enlarged spleen, and a bone marrow biopsy - I was told diagnosis was quite difficult - was beginning to think I would never get one and that I was imagining all my weird symptoms - but in the end I was told it was confirmed as Low grade MCL at a minimum of stage 3. I have been put on Active Monitoring.
I am still reeling a bit from that. Initially I took to heart the advice not to Google an illness, and extended that to do not read anything at all. Unfortunately I have an overactive imagination, so I ended up with spiralling anxiety and worry, my brain wouldn't switch off and my usually normal blood pressure shot up, so I am now on medication for that!
Luckily I am fortunate to have some excellent friends, and have been able to talk to them about my feelings, and I have gradually started to do a bit of research - only on Macmillan and Lymphoma Action sites though, I was stung by the Google trap many years earlier when researching my Dad's Myeloma (he died when I was early 20s).
I have read up a bit now, and am starting to get my head around the way that Lymphoma differs from other types of cancers, I am trying to think of it as a chronic illness that may need treatment on occasion, it could be many months or years ... or maybe even not at all (one can hope). Or it could be next time I visit my consultant that things have changed. This is the uncertainty that I struggle with, and I can see that it is what a lot of people who post on here are worried about.
Anyway, in the short time since my diagnosis, the things that are helping me to not lose myself completely are: talking with people, giving myself little creative projects around the home, daily yoga first thing (free on YouTube), outdoor volunteering in nature, cooking delicious, healthy meals for myself and my family. I need to fill my time and feel useful still after losing my job last May, there is already too much time to overthink!
Next time I have an appointment at the hospital, I am going to pluck up the courage to visit the Maggie's centre there, as I think they host a regular Lymphoma support group. Believe it or not, I am not a person who finds it easy to accept help where it is offered, and I am definitely socially awkward. But I've never felt so out of control at times recently, so here goes... out of my comfort zone. Maybe it will actually do me some good!
Hi Han Bullit ....... my story (LINK) is very unusual in that I had to be treated for 2, very rare, hard to treat types of T-Cell Lymphomas at the same time..... one being incurable..... so yes late 2013 to mid 2016 was very challenging but here I am, continuing to live a great life.
As for recurrence timings?...... Mantel Cell Lymphoma like many of the other 60 types of Lymphoma just don't fit into defined box's - each journey is rather individual and the statistics you often see are based on a wide group of people....... but we are all actually a statistic of 1.
In my case, I relapsed multiple times over the first 15-16 years with the longest remission being 9 months......... I was told that my incurable type of T-Cell would most likely show it's face a year or so after my second Allo (donour) Stem Cell Transplant in Oct 2015......... well I am 8+ years past that check-point they randomly put on me......... and no relapse.......
My Heamtology and Stem Cell Transplant teams actually discharged me in Sep 2018 and told me "..... go enjoy your life..... but we are here if you needs us"...... and so far so good.
Hi Bullit the Lymphoma Action link below explains the general concept of active monitoring well…..
Hi Bullit I had 6 cycles of R-EPOCH between late 2013 to May 2014….. this contains most of the drugs in both R-CHOP and R-DHAP and honestly I did ok.
R-EPOCH is a long durn treatment so I was an in-patient first 5 night/6 days on my 2 IV pumps 24/7 for over 120hrs for each of my 6 cycle and honestly it was ok.
You may find this link helpful as you get ready first your treatment.Top tips for the day of your chemotherapy
If we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.
My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.
These are some of my simple tips.
Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.
Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.
There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.
But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when you immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.
I was given these simple rules for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must call it in… when on treatment I used the Treatment Hot Line number I was given……. but post treatment I was advised to call 111 and this always opened the right doors for me to get seen, assessed and treatment if required.
This is especially important with regress to Sepsis as sepsis doesn’t always cause a high temperature though, especially if someone is taking steroids……. below 35°C could be a sign of infection which your immune system may be unable to fight so this needs to be called in as well.
I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps you well hydrated.
It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.
Based on my long experience we were not hermits….. we went out……. our mental health is importantly to consider. Just not crowded places like supermarkets, restaurants etc.
We would meet up with family and friends in a quiet corner of a garden centre….. fresh air is a good healer……. We had family (4 granddaughters) and friends visit the house. The main thing is check that folks visiting are not carrying a bug…. coughing, sneezing etc….especially children. We would open the windows and let some fresh air in, good hygiene control…… We did this all the way through my main 2 years treatment 5 months of Chrome, 45 sessions of radiotherapy and 2 Allo (donor) SCTs….. and I did not have one infection.
All the very best.
