Hello
I have just been diagnosed last Thursday and it's all very scarey. Start treatment next Monday.
Hi Brend and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have MCL but I was diagnosed way back in 1999 with a rare, incurable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well.
I see that you posted on another older post so let’s see if the member picks up on it. I also see that you are having the NORDIC regimen, there have been a few folks on this over the years so again let’s see folks pick up on your post.
It is all is scary in the early days but you do need to understand that this is very treatable with great results although some folks find the treatments challenging.
I will always recommend that when you embark on the treatment journey do read the information provided by your team and also on recognised Cancer Support Charities...... but stay away from random Google search’s but you will find the Lymphoma Action website very helpful.
The treatment information you are given to read can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all are bad. If we asked 10 people with the same condition who had the same treatment you would get 10 different answers.
These are some useful links for you to have a look at:
Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.
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.
During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.
Avoiding Infections obviously is very important but you will totally get this during these challenging times.
I would also highlight the importance of drinking 2 litres of water every day throughput you treatments as this will flush out all the toxins released by the chemo and protects your kidneys.
Always around to chat and answer questions.
Honestly you will get a 1000 answers on Google and there will only be a small number of answers that are up to date and accurate.
You can see my story if you hit my community name. But you will see that I had a very rare type of NHL that was very hard to treat……. But I am over 6 years 9 months out from my last treatment and living as good a life as any other 66 year old can live.
I had a PICC line, apart from the sting to numb the area I never felt a thing and it made everything so simple when it came to treatments.
The scan is used to identify where your NHL is presenting and with this they can stage your NHL. Unlike in solid tumour cancers like Breast, Lung, Colon…… where Stage 4 is seen to be a poor prognosis……. In NHL it is used to indicate the position(s) of your presentation and how much treatment you need….. J was stage 4 in late 2013……. and I am still here fighting fit over 8 years out.
The Lymphoma Action website has great information and you will find this link Top Tips for the day of your Chemotherapy to be very helpful.
Lymphoma is the 5th most common cancer type in the UK but one of the most treatable of most.
((hugs))
