Newly diagnosed symptomatic FL3A

Hi Sycamore Ann and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your uncle.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Based on the information in the above link taken from the 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)

Grades 1 to 2 and 3A follicular lymphoma are all slow-growing and are treated in the same way. The grade does not affect the likely outcome of treatment.

Grade 3B follicular lymphoma is usually fast-growing. Under a microscope, it looks like a type of high-grade non-Hodgkin lymphoma called diffuse large B-cell lymphoma (DLBCL). It is treated the same way as DLBCL.

So he/you or his caregivers need to get in contact with his clinical team to clarify this….. over my 25 years I have had mixed messages at times.

As for Staging in Lymphoma it is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

Always around to help or chat.

Hi Mike

Thank you for the warm welcome. I'm sorry that you have had to endure the journey you have done, and am very grateful for you to be sharing your experiences with myself and others. 

Thank you also for the information you have provided and I shall certainly request further questions to be answered to clarify things. Information we have received so far has been quite vague and we have all received very mixed messages, as I'm sure many do. 

Many thanks again 

X

It’s a pleasure to help out. As for me I am 9.5 years out from my last treatment, I turn 70 at the end of this year and we are off to Malta in a few weeks….. regardless how challenging the Lymphoma journey is most folks find light at the end of the tunnel (See my story)

I never actually did see the same Haematologist all the time so in the early days (late 2013 onwards as I was with Dermatology between 1999 and late 2013) we were getting mixed information so we quickly developed the process of having questions in a note book and my wife ensuring that we asked the questions and she was the note keeper.

You may find these two Lymphoma Action Top Tips helpful….

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

….. at times we had to hold up a hand and ask for what they had said to be put in a way that the layman can understand…… but our CNS (Cancer Nurse Specialist) was excellent and she would often sit with us after an appointment to see if had ‘got’ everything and to answer questions.

Consultant know exactly what they are saying….. but at times their understanding and explanation does not hit the spot with the people in the opposite chairs.

Hi Mike

I hope you continue to be well.

I wanted to update you following an update from the consultant.

This is following 5 out of 6 planned chemotherapy sessions......

There has been a 50% reduction which is being referred to as a partial response - though not 100% sure what this means.....

It must be good news as the FL has responded to treatment having reduced at all is my thinking.

We are told a PET & CT scan will follow 6-8 weeks after the 6th chemo session scheduled for 10 days time which will help determine what is next. 

From you vast knowledge and experience will this scan likely compare and determine whether further reduction has occurred or if it has started to grow back after the "last" planned 6th chemo session has completed and therefore determine whether remission has been reached or is 50% reduction too small of a reduction to indicate this? 

Thanks

Hi again Sycamore Ann and good to hear from you……. and yes I am well.

Just returned from Surrey late last night following a long weekend down to see our three granddaughters who live down there.

From my understanding - 50% reduction at this point in time means there is work to be done to get to a full response.

But your remaining chemo and the ongoing accumulative effects of all your treatment can still make a significant dent in that remaining 50%

This is why your post treatment PET & CT scan is 6-8 weeks after the last treatment….. as this allows the treatment to continue to do its thing and for your body to settle down reducing any false positive scan results.

Based on appointments with my consultants and my great CNS…. we would have my various scans on screen and they were able to point out progress…. there is obviously differences between my journey and yours…… manly due to me being treated for 2 rare types of T-Cell NHL at the same time but also my main chemo was used to open the door fir me to go on and have my Allograft (donor) Stem Cell Transplants…. in fact I was not on complete remission at the end of my chemo so we had to look for the Allo SCT to do the job.

As you will see, this group is on the slow side and this may well be down to the high profile of Lymphoma Action.

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.

All the links I use are taken directly from their website and I have volunteered with them as long as I have with Macmillan…… if you are in the UK you may want to widen your support and information base by checking them out

They run various Support Platforms…

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……

Their Closed FB group alone has over 5800 members and unfortunately you would most likely bump into me on there also ;)

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Always around to chat ((hugs))

Hi Mike

I'm so pleased to hear you are well and that you are out and about. I hope you had a wonderful time visiting your granddaughters. 

Thank you as always for all of the useful information you provide and for your super fast responses. 

I have looked at the LA site a number of times and will continue to do so thank you. 

I'm not sure I was aware of the FB group, so will look to join there also. 

Take care and thanks again