Terrified - New and sudden Diagnosis

Hi Kate Mermaid 1 and welcome to this corner of the Community although always sorry to see folks joining us.

I am Mike Thehighlander and I help out around our blood cancer groups. I don’t have Follicular Lymphoma but was diagnosed way back in 1999 with another type of low grade NHL. My one is rare and also incurable but very treatable eventually getting to Stage 4a so although my Lymphoma ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

It’s a lot to take in snd good clear information is important so stay away from random Dr Google searches. The best place for info in the UK on Lymphoma is Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.

You need to accept that you have a life long illness, but unlike other incurable conditions this is very treatable and provides long periods of remission allowing you to live a normal life, although in Covid times what is normal?

Lymphom is completely different from solid tumour cancers like breast, lung, liver…… even when you are given a stage number between 1 and 4 and n other cancers the higher the number the poorer the prognosis. In Lymphoma it’s only a goid to where your lymphoma is and as to what treatment needs to be used and for how ping - I was stage 4 and I am still around, been in remission for 6 years and doing great.

Once you have a clear treatment plan including the name and number of treatment cycles things will settle down….. and do come back to us with this information as we can help more.

The word chemotherapy will often struck fear but honestly things have moved on over the years snd these treatments are all do-able.

I had an extreme journey as my type of NHL is rare (hit my name fir my story) bit over a period of 2 years ai had over 800 hrs of chemo snd on the whole did ok with it.

I have talked with many folks who have FL and bern through treatment snd thru have done well resulting in great outcomes,

You are going to have questions so this is the place to ask them as someone will be able to help from their first hand experience. So let’s us walk this journey with you,

It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

((hugs))

Hello, I too have follicular lymphoma. When you have a treatment plan and know which chemo they are suggesting, we will be able to tell you more about what to expect. I have done two chemos, the first more heavy duty than the second. Hoping for a long remission now.

Hi Kate, I'm recently diagnosed with folicular lymphoma,  today I've seen consultant for first time. Waiting for mri scan to determine if I need chemotherapy etc, I'm scared, I have had a few weeks of waiting from routine mamagram to biopsy to today's appointment.  Good luck with your treatment x

Thank you Mike, I joined the forum during one long sleepless night and haven't managed to get back on here since. My journey so far has been very quick and my head is taking some time to catch up, thank you for the advice and reassurance. Kate

Good Morning Helen, apologies for my delay in responding. I have been on a roller coaster for a month (I'd quite like to get off now, but apparently that isn't an option!!). I had a routine Blood test on 01/10/21 as I was feeling fatigued and had some unusual pain in my abdomen to starting my first round of Chemo (RCHOP) on 02/11/21, I also had two CT scans, a PET CT scan, a Bone Marrow Biopsy and a Supraclavicular Lymph node biopsy, my mind is blown by how quickly my life has changed. I suppose I am lucky that where I live the services have worked pretty quickly. Have you had any further information about treatment and when you are starting or is it a case of 'Watch and Wait'? I was given one treatment plan and then it was changed. Also I am feeling alright (only 2 days in so I'm taking it one day at a time) which seriously messes with your head. Wishing you all the luck, I'm here if you want to talk x

Hi Londoner12, I have been diagnosed with a FLIPI score 4 Follicular Lymphoma, Bone Marrow High Grade diffuse large B-cell lymphoma, current treatment plan is R-CHOP chemotherapy once every 3 weeks for 6 cycles followed by a two monthly maintenance plan for 2 years. I had my first treatment on 02/11/21 it was a long day but touch wood I feel OK so far, I'm assuming the steroids are helping enormously with that aspect. It's all so new and scary, to be honest the mental side is currently worse than the physical as it's very easy to overthink things. When you say you have done two chemos, can you elaborate? How long was that over? I'm glad it went well though and you are looking forward to a long remission. Kate

Hi again Kate Mermaid 1, it can all initially be a blur but you will find that the noise between your ears will start to calm down once you get into a rhythm.

There are many people in the community who have walked this walk so can give you first hand support and answer questions ((hugs))

To elaborate, I had follicular skin lymphoma with no treatment from about 2014. Then in 2018 had a breathing problem. At first they said lung cancer, then a biopsy said probably diffuse large B cell lymphoma. So did RCHOP for 6 rounds. In 2020 it came back elsewhere. Biopsy said follicular so did R-Bendamustine for 6 rounds which worked so obviously not the high grade back. R-Benda is easier than RCHOP. No hair loss and fewer side effects. This time I'm doing the two years ritux maintenance. It seems that for me my main side effects are actually from the rituximab which seems to be unusual. I'd always assumed it was the chemo but now I'm only doing ritux I now know. Some people work all through chemo so your side effects may well not get much worse. Good luck.

Hi Kate, 

I think I can understand where you are coming from as it sounds similar to me. I’m a healthy 43 year old that trains in the gym 4 times a week, I’m generally healthy and well. I had some digestion issues and bloating and thought I had a hernia!  I walked in to have the “hernia” checked on 15/9/21 and by 1/10/21 was told they believe I had Lymphoma.  I’ve since had biopsies and PET scans and been told I have stage 4 folicular NHL and my head is blown.
 I think I’m still trying to believe it or get my head around it myself and I’m one chemo into a 6 month treatment plan. 
its mind boggling and scary as hell isn’t it.  I’m not sure you can wrap your head around it when it happens so quickly, but I think it’s great you are reaching out and connecting to others. 
so you are not alone and it seems neither am I. 

i Kate, 

I think I can understand where you are coming from as it sounds similar to me. I’m a healthy 43 year old that trains in the gym 4 times a week, I’m generally healthy and well. I had some digestion issues and bloating and thought I had a hernia!  I walked in to have the “hernia” checked on 15/9/21 and by 1/10/21 was told they believe I had Lymphoma.  I’ve since had biopsies and PET scans and been told I have stage 4 folicular NHL and my head is blown.
 I think I’m still trying to believe it or get my head around it myself and I’m one chemo into a 6 month treatment plan. 
its mind boggling and scary as hell isn’t it.  I’m not sure you can wrap your head around it when it happens so quickly, but I think it’s great you are reaching out and connecting to others. 
so you are not alone and it seems neither am I.