stage 4 Lymphoma spread to bone marrow

Hi Haz1234 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 was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a (including in my Bone Marrow) in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

Your journey to diagnosis is not that unusual and often people can well have been living with their Lymphoma and often has been seen as something else.

What you are experiencing during your first cycle is rather normal...... by the time I went for my first Chemotherapy it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale. I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner..... the more treatment I had the better I got.

I went on to have 6 Cycles of R-EPOCH = (Rituximab + Etoposide, Prednisone, Vincristine (Oncovin), Cyclophosphamide, Doxorubicin (Hydroxydaunomycin) in between December and April 2013/14. 6 days/5 nights 24/7 continues IV Chemo and honestly I was only sick once and this was down to a bad food choice, yes I did feel nauseous but the meds did their job....... and the only thing that got worse was the Fatigue but if you look at my profile (link at the bottom) you will see that I asked my very first nurse for some advice for getting through the Chemo and she told me, eat, even when you feel you can't do it try. Sleep when you are tired but keep active, small but often spells of activity.

So after every meal I took Laurel and Hardy (my two Chemo pumps) for a walk round the corridors of the ward. It turned out that I was actually doing about 2k a day. On the whole the chemo journey was ok and the exercise did help overcome some of the fatigue, sounds so counterintuitive, but exercise does actually help….. but I was not in complete remission so further treatment was required.

So you may find that this is as bad as it gets but some find things do develop but don't sit around looking for things to happen, get on with living as best as you can.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys keeping you clear of kidney infections.

Lymphoma is the 5th most common cancer in the UK after Breast, Lung, Colon and Prostate cancers but most people just don't know much about Lymphoma and it's important to 'get' in these early days that Lymphoma is rather different from most other cancer because it is a cancer of the blood and on the whole very very treatable and unlike Breast, Lung, Colon and Prostate where getting a high stage of say stage 4 would be a poor prognosis it's just not when it comes to Lymphoma.

Remember I was stage 4a back late 2013 and I am still here doing great. Staging in Lymphoma is 1) used to identify where the Lymphoma is presenting (it can show up anywhere) 2) what is the best treatment for that specific type and your presentation and 3) how long the treatment should last.

Do you know the exact type of Lymphoma you have?....... and what is the name of the chemo you are on?

Always around to chat ((hugs))

Hi Mike,

Firstly, I would like to thank you for taking the time to respond in depth to my concerns. I cannot explain how difficult it has been to stay strong and act like everything is fine so that my family do not get upset. To be able to speak openly about my fear and struggle is really calming. 

I have stage 4B high grade diffuse large B cell Lymphoma The standard treatment for diffuse large B cell lymphoma is outpatient based with five drugs given on a three weekly basis for six doses (PolaRCHP). However, given the higher risk features and my young age (26) and fitness, the doctors  have recommended that I have a more intensive regime called R-CODOX-MIR-IVAC, which is given in four cvcles as an inpatient, to give me the best chance of cure. 

Thanks for sharing your story  Mike! 

Hi again Haz1234 thanks for the information. DLBCL is a type of High-grade non-Hodgkin lymphoma and although it’s fast growing so needs to be treated aggressively this is very treatable and the aim is indeed to cure, unlike my low grade NHL that is incurable and a life time condition.

We do actually have a dedicated Diffuse large B-cell lymphoma support group so do have a look round the group.

Walking this journey can be hard especially if you are trying to protect your family. As family we had an everything on the table approach and it worked well for us.

But getting as much support for yourself is ever so important so do check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc and all things Lymphoma but more importantly they  run regular Support Platforms with a group specifically for you g adults...... I highly recommend these groups as there is nothing better than talking with other 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.

Thank you for this Mike, again really appreciate it. 

i’ll definitely look at the links below.

Hi my name is Ciara, 48 Yr old mom of 3 boys. I was diagnosed with low grade b-cell non grade Hodgkin lymphoma 12th January 2023. My last blood test was 2017 so consultant can't say how long I have it. I went to see my local gp with tingling in my left index finger and thumb..not a symptom of my cancer. I had a ct scan, pet scan & bone marrow biopsy, this is where my cancer is in bone marrow. I was put on watch and wait and started RCVP treatment on 12th June. I had my 5th treatment on Monday 11th Sept and 6th now on 2nd October. Treatment going well..had a few reactions whilst getting it but generally, ok. Was meant to get 8 treatments but consultant thinks only 6. So I'm content with his decision. 

Hi Caira Blondie1975 and welcome to the group. Good to hear that your treatment is going well, let’s look for your final treatment to go in with little problems  and allow you to move on.

Always around to chat.

Thanks Mike. Really appreciate all your advice and wise words. Will keep in touch.