Non-hodgkin's Lymphoma

Hi and welcome to our corner of the Community but always sorry to see folks finding us.

R-CHOP is normally very effective so this is unfortunate that he has now to go on to stronger treatment.

This can happen but there are more tools in the Haematologists tool box that can put this in a positive direction.

It would help if we know what his exact type of NHL is?..... and what treatment they are moving him onto?

I was diagnosed back in 1999 with a rare skin Lymphoma, had some very strong treatments (see my profile) and I am doing very well - so be encouraged.

Keep posting as we can walk this with you ((hugs)) 

I'm not 100% which kind it is but this is the treatment starting tomorrow,  thank you for your kind words it's very much appreciated 

He has a lump on the side of his neck under his ear which we were originally told was just a swollen gland, he then developed a lump on his tonsil. The whole side of his neck has swelled up now and he has a large gathering of fluid under his chin which makes him self conscious and he wont go out without a scarf or a jacket that zips right up under his chin. It's very hard. Trying to stay positive and take one day at a time and its reassuring to see others have come through this x

Hi again  this is such a scary time as you are not in full control of everything that is going on around you - information is coming this and fast so you do need to try and sit with your Specialist Nurse and try and get a picture of the plan.

You don’t say what type he has but it is most likely a High Grade but how he is sounds so like what I had 6 years back (see my profile)

The treatment R-GDP is often used as a salvage treatment (when R-CHOP has not worked) and this can lead to then having a Stem Cell Transplant (I had 2) has this been mentioned?

My condition moved to being very aggressive after 14 years being Low  Grade but you do need to know that there are treatments that can still be used to help move this is a positive direction.

Your head is a whirlwind but the fact that you are on here talking with us will help a lot.

Keep posting ((hugs))

Thank you  this fills me with alot of hope that you've been through the same thing and your doing so well! Yeah they have mentioned stem cell transplant but I feel a bit out if the loop as I just drop him at the hospital and go to work so don't really hear what's going on while hes in there. People keep telling me to take time off but I cant as I'm the only one earning now and we have kids at school. I've asked him if he wants me to go in with him but hes happy to go alone so I can work.

Good morning  and good that my post gave you some encouragement.

Long post warning ;)

R-GDP is indeed used as salvage treatment for going onto an Autologous (Auto) Stem Cell Transplant (SCT) I could not have an Auto SCT as I could not get into remission so I had an Allo SCT using stem cells from my big brother.

An Auto SCT requires your husband to be put in remission. He may then be given a set of injections (once a day) to help the Bone Marrow make lots of Stem Cells and these then end up in his blood stream.

On the day of harvesting his cells two lines are put into the arms - one out, one in.

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 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 around.

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 through a central line.

An Auto SCT requires what we call Conditioning to happen just before he would get his Stem Cells. This is used to kill his immune system completely. This is usually done using some more very strong 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 starts to reboot the immune system and over time the blood counts come back up. Its all very cleaver, very science fiction but very do-able.

Due to the very specialised nature of a SCT it is often done in a dedicated SCT unit. It a very clean environment (Ward) in a hospital, he may get his own on-suite room but this is not standard across all hospitals........ and yes he will 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 he won't have a functioning 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.

This is a lot to take in and is rather different from what he has gone through so far.

We do have a dedicated Stem Cell Transplant group where you will get support from people who have walked the SCT walk.

When you are ready please join the group and introduce yourself to the group and ask your questions.

Clear Information is very important...... I would encourage you to try and be at some of the main appointments especially when he meets with the SCT team as they will be giving some very comprehensive information...... and from my long experience supporting folks on this journey - the majority of men don't take stuff in and tend to just brush over it - 'what will be will be' type of thing.

Information will come thick and fast so I would always recommend you get a family note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.

The note book is where you record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

My wife worked all through my main chemo but I was an inpatient for 5 days for each of my 6 cycles.......... but as you will see from my profile my 2 SCTs were in Glasgow - we are up in Inverness (9 hr round trip) so we had to move down to Glasgow for 4 weeks during my first SCT and 7 weeks during my second SCT.

This was hard work for both of us but my wife did continue to do some work remotely and I think it did help her get through the long days in the unit when I was fast asleep.

This is a long journey so you do need to check that you are accusing all the support you can get. With this in mind you may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00

This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

Always around to help out ((hugs))

Thank you so much! That's a brilliant amount of helpful information and is much appreciated! It's a long road but we are heading down it with high hopes, the idea of the diary is a great one I will definitely get one of those and make good use of it. Thanks again

Hi,my  husband has recently been diagnosed with non hodgekins. We have a young family to and your post descibes how i feel. I'm think worst case and i have anxiety. Just wanted to say hello really and send support from someone facing a similar time. Take care 

Hi Pwblwc, thank you for reaching out. It's a scary time and it's good to have support so thank you. It sounds like your situation is very similar to mine. How are you all coping and how is your husband? My husband has been having treatment for a few months now and its having its ups and downs with a few spanners thrown in but he is doing very well in himself so far. I'm here if you ever need to chat, Take care 

Hi, just wondering what type of NHL does he have, as it helps to know when we are giving support and advice.

John