Follicular lymphoma

Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). If you're suffering from follicular lymphoma, or know someone who is, join this support group.

Follicular lymphoma

Peter1954
Posted by

Hello Fred,

So you gave up when I started really, I couldn't stand the ordinary cigarettes, so until I got a proper job I used to ration myself to a packet of Rembrandt a week, think they were about 5s 6d and if my Dad gave me one he smoked Perfectos.

Just so glad when I did give up they are stupid money now.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Peter1954
Posted by

Off to the hospital today, to find out what they propose to do next. This weeks been pretty rubbish, can't manage more than half a mile and I'm sweating like a pig at the end. Left leg is now half as big again as my right one and a weird blotchy strawberry colour.

I've had 3 sleeping tablets this week as I can't settle  at night, eatings gone out the window as I've lost 2 kg this week.

Overall though I am still positive, but its badly affecting those round me, they seem to like blaming others for what I've got, but all I say is anyone can get it.

At least I know I'll feel better soon

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

BedrockFred
Posted by

The very very best of luck Peter, hope you get a good diagnosis today

Will be keeping everything crossed for you 

Together we are stronger
Cecren
Posted by

You're right Peter.  Shit just happens and it's not something you can easily attribute to what we do.  Lymphoma is too complex and chaotic a system to pin down like that and unless it's a hot variety, most of us have had this disease for some time before we get sick enough to diagnose.  Advanced disease is pretty commonl when we start treatment for FL. 

You sound as if you're having a lousy time right now, but you've been fit just before it got like this and your basic strength should help you handle the systemic treatment to fight whatever's going on.  I hope they can start your treatment quickly and it helps you fight these unpleasant symptoms hard and fast.

Looking forward to hearing how things go!

C

Melbourne sh
Posted by

Good luck Peter

hope all goes well today

Melbournesh

Peter1954
Posted by

Well it went pretty much how I thought with just one difference, my follicular lymphoma has transformed, so next week I am going into hospital for 1 night, while they start this off, they will repeat this for a further 2 times then I have a 2 week break before it all starts again for a further 2 cycles, at the end of these 3 cycles they will them be getting me into hospital for a month, this is to remove a decent amount of my bone marrow, before killing everything thats left behind, then putting back my marrow and hopefully maybe it'll kill it off.

The drugs they will be using are gemcitabine, cisplatin and methylprednisolone,referred to as GEM-P  the antibody will be Rituximab.

They've also given me a load of tablets t get started on including an antibiotic, in case the redness of my groin lymph nodes is infected.

Some year this is turning into :/

But I do feel okay otherwise.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

johnr
Posted by

Hi Peter, sorry to read the disease has transformed and for those who don't know it means it has changed from FNHL to DLBC which is an aggressive lymphoma, it sounds like you are going to have an auto stem cell transplant which should sort out both types of lymphoma. If they just treated the dlbc then you would still be left with fnhl and would be back on watch and wait, but the transplant gives you a chance of cure for the fnhl. 

The is a stem cell transplant group that Mike helps out on too so it may be worth posting there as this is a very different treatment and Ray who posts there now an again has been down this road (if my little grey cells are not playing memory games) you will get lots of help and support there just like here. 

Good luck and hope all goes to plan.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Thehighlander
Posted by

Hi Peter, as John has said you have basically described an Auto (Autologous) Stem Cell Transplant (SCT)

The good news is that this is a very effective way of pushing your condition well into touch to the point that it took my rare type of NHL from being Incurable, to now being NED (No Evident Disease) total result.

As John says we have a dedicated Stem Cell Transplant Forum. This is a great place to connect with people who understand the unique nature of a SCT.

I have been through two Allo SCTs with Stem Cells from my big brother as my team could not get me cancer clear to harvest the Stem Cells and I needed stronger conditioning to kill my Immune System...... you can check out my story again looking through new eyes.

An Auto is less fraught with dangers from the body trying to kill off the new cells. My body killed of my brothers first set of cells but he won the second time through and my 'All New Me' grew.

Her is some basic information about an Auto:

An Autologous SCT (Auto) involves getting the patient into a condition that no cancer is evident this is normally done by using very strong chemo then the Stem Cells will be harvested. 

This is done by putting a line into the arm. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job so this is before they turn into Red or White blood cells etc) and the blood returns back through the line back into the blood stream. The machine can pick out millions of cells over a 4-5 hours process. The harvest is on the whole painless, just a lot of sitting.

The Stem Cells are then stored until it's time to use them. The method is called cryopreservation: it freezes stem cells at temperatures below -150oC, by immersing them in nitrogen vapour. When required, they are defrosted in a water bath and are put back into the body normally through a central line.

An Auto also requires what we call Conditioning to happen. This is done to take down the immune system completely. This is usually done using some more Chemo - but its only for a few days. Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion. 

The Stem Cells then go to the job centre in the Bone Marrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells and the 'All New You” starts as the body start to reboot the immune system and over time the counts come back up:)

It's all very cleaver, very science fiction but very do-able

Due to the very specialised nature of a SCT it has to be done in a dedicated SCT unit. It a very clean environment (Ward) in a hospital, you may get your own on-suite room but as the Auto is not so fraught with issues you could be in a room with others......and yes you do get visitors (some people think they have to live in a bubble) as long as every one is healthy its no problem but some units will have rules about little children.

Remember you don’t have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until your new immune system kids back in. You will be an inpatient for some of the time but this all depends on how fast 'The New You’ starts to grow.

You wold be on for 3-4 weeks depending on you not getting infections and how quick your counts come up.

We can help out over in SCT Central, it can be a rollercoaster but all do-able.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Cecren
Posted by

Hi Peter, 

Transformation  is a risk we all face.  But a month in hospital is not an easy thing.  The Highlander has experienced two such treatment programmes and his expertise is the best!   It is a tried and tested technique, but I bet it's not fun.

High summer is not when most of us would choose to be enclosed in hospital, but it sounds as though they're giving it some serious welly.   I hope you can find something to keep such an active & intelligent mind occupied while you go through the programme!

Meantime, I hope those antibiotics are helpful and you get to feel more comfortable ASAP.

Best wishes for this new & unwanted challenge.

C

Peter1954
Posted by

Hi John, thanks for the cheer up, I will go and take a look at that part of the forum and paste what I put in (lazy typist you see)

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Peter1954
Posted by

Hello Cecren, Indeed summer isn't a good time, much rather being outdoors, but listening to them (Doctors) and the head of the hospital Professor Cunningham, they don't have a lot of choice. For myself I'm just grateful to be in their hands.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Peter1954
Posted by

Wow Mike thats a lot to take in, yes I have already joined your SCT forum, but I'm just going to copy and paste my initial post here and let it run.

Am I scared, no not one bit, but I am apprehensive.

I'll update here as well as it progresses.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

BedrockFred
Posted by

I know nothing of what you will be going through but I'm with you every step of the way 

Mike (The Highlander) will give you sound advice he's been through it all, I really admire his strength and his positivity 

Good luck Peter and stay strong we're all rooting for you

Together we are stronger
Peter1954
Posted by

Thank you Fred, Looks like I'll be doing double posts before long LOL

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

johnr
Posted by

Is that called multi tasking Peter ;)

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are