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.

Starting Treatment 27th December

BedrockFred
Posted by

Hi

Have been diagnosed and starting treatment after Boxing Day they are using R-CHOP treatment my cancer is in my stomach and spread to the chest they tell me that is quite common with this form of F Lymphoma

They tell me my first chemo session will last between 6 and 7 hrs and I will be stopping in hospital for at least overnight then I will have Chemo as an outpatient in three 3 week cycles

Just wondered if anyone can give me an idea of what to expect I know the hair loss etc just wondered how I will be feeling in the days after treatment

Any useful information for me and my wife we would be grateful

johnr
Posted by

Hi, try to read some of the posts made by others and you will see everyone reacts differently, but I will share some of the common experiences, I had 8 cycles of rchop 9 years ago.

50% react to R - rituximab and you will find out as it goes, they start it slowly and increase the rate every 30 minutes or so if you don't react. Reactions are hives, red blotches, feeling itchy, sore throat or throat closing - if any of this happens tell the nurse straight away and they will deal with it. R is given via a drip line and the other drugs are pushed by syringe into you vein . Its not as bad as you expect and the fear we all have re chemo is due to the stories and heading in to the unknown.

Drink plenty and don't be surprised when you pee red its the doxorubicin and only last around 24 hours. You will get lots od drugs to bring home so a spreadsheet to help know what and when worked for me.

Steroids mat interfere with your sleep and moods especially as each cycle progresses. Hair loss will happen, so some get a short cut as it becomes a pain when it does start to shed. Watch out for constipation, a dry mouth - pineapple works for that, metallic taste when eating and drinking and the final common one is fatigue, which again can get worse with each cycle.

Try to exercise by walking each day, keep a daily diary so you can tell the team how you have been and get used to needles as they will be taking bloods on a regular basis.

Some sail through others find it hard and some find it gets tougher with each cycle, if you do have an off day don't worry, try to do things that make you smile and have little treats, get the guidance re what you can and cannot eat, and be sensible about risk and bugs or infections. by cycle 3 you will be in the groove.

hope it goes well and you are in the 50% that don't have a problem with R and any questions just ask

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 and a second welcome to the Online Community bit always sorry to see folks finding us.

I see John has given you some great help. I had a different type of Non Hodgkin's Lymphoma but did have a treatment that contained a few elements of R-CHOP and I did well with it all.

Yes my hair was like snow once the sun comes out and the fatigue did build up over time but simple exercise did make a big difference to this. I did sleep when I was tired out but still kept up the activity. But on the whole it was ok.

My treatment cycles lasted over 120hrs at a time so 5 nights/days at a time and I had 6 - 3 week cycles so well over 720hrs treatment but the treatment did what it says on the tin :) 

Here are a few links that you may find useful.

Nausea

Fatigue

Avoiding Infections

Eating and Neutropenia

It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

We are around to help out and answer questions.

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

BedrockFred
Posted by

Thanks John for the information

One thing I noticed in my original post I said I was having 3 three week cycles, what I should have said was I  am having 6 to 8 cycles in 3 week cycles

Had an enchocardiograme yesterday and seems my heart is good for treatment but she did find a lot of fluid in my lungs but she checked this out with heamotology who said they knew about this from my CT scans and it was not a problem 

I have a lot of tumours and rather than wait till new year they want to start on the 27th December which I am quite pleased about didnot want to wait another three weeks the sooner it starts the better

Chemo is worrying when you never had it hear so many "scare stories" but reading this forum has helped a lot

BedrockFred
Posted by

Thanks Mike

I'll get that done, I am a keen walker and have two dogs so will take regular walks all be it not as long as I used to do, in fact have been walking the dogs most days for a couple of miles but right now I get pretty breathless so not quite as fast as usual

It seems quiet a while since I first went to my Doctor( late August) with pains in my stomach and having an ultrsound scan that showed abnormal lymph nodes in my stomach then a CT scan with contrast at hospital and finally a CT Scan with guided biopsy but since that last scan things have moved faster to me starting treatment on the 27th December

Thanks for the links

Thehighlander
Posted by

Me again and it is good to connect and Happy Christmas........ yes not the Christmas you would have wanted but you have to play the hand you are given.

5 year ago on the 27th I started my fist 5 day treatment and you will see from my profile I was in a very bad way but as my brick sized presentation was on my neck we could actually see it melt away. My wife keep a picture record and if you flick through the photos you do see it just melt away, that is how the chemo works.

The stories with regards to how bad chemo is, is often second or third hand and often old. Treatment has come so far over the years.

During my first treatment a Pharmacist friend came in past the ward to see me. She said that she had actually made up all my chemo bags that afternoon and when they do it its done in a special airtight biochemical booth and they use robotic arms to do the work........ then in her own words "Then they take it up stairs and stick it into your blood - its amazing stuff our educated bleach"

If you do feel any nausea (I had in the early days) tell your team as they have lots of different anti-sickness drugs to help, do not suffer - tell them as they can fix it.

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

johnr
Posted by

Hi, yes I new it was rchop 21 as its called this a version called rchop 14 where you get it every 14 days instead of 21.

The good news is that rchop tends to melt away fnhl so you should get some relief quickly and it does tend to kick it in to touch, one thing I did not mention was as treatment progresses your neutrophil count will drop below 1 and when it comes to treatment they need it to be above 1. So if you have a treatment or two delayed don't worry, its happened to lots of us and is more common with rchop, if it becomes a problem they can give you a drug that stimulates the white cell production which brings the count up. It happened to me 3 times so just giving you a heads up in case it happens as we all tend to respond to it as a set back at the time and its not, they need you to be fit to tolerate the treatment.

let us know how you go

john

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Tina478
Posted by

HI Bedrockfred

Sorry you have to have treatment over the Christmas period. I am 18 months ahead of you, had a huge abdominal tumour,  6 x r-chop, 15 Radiotherapy and having 5th Immunotherapy on the 27th, so will send you positive vibes.

The thought of r-chop is terrifying, but the reality was not as bad as expected. Of course it's not a walk in the Park, but you will get through it. Day 7-11 is the worst, you may get abdominal pains, but that is the chemo destroying those dratted abnormal cells, so means it's working. Days 7-11 i didn't feel like eating anything other than vanilla ice cream and boiled eggs.

Ask your Gp for a prescription for difflam mouthwash,  as your mouth may get a little sore. If you haven't already, ask for the form to apply for exemption from prescription changes.

The first few days after chemo will also mean trouble sleeping because you have to take steroids for 5 days. Best advice is don't fight it, accept it, and just read a lot, it will wear off. 

Avoid people with cold and coughs, you can see them after.

Plan days out or trips in week 3 of each cycle, as thats when you are recovering.  You will feel ok in the first week, but will be vulnerable, so take it easy.

Very best of luck.

Tina 

Courage does not always roar..........

BedrockFred
Posted by

Thanks Tina for the advice and positive vibes, and all the best to you

I will ask for the mouthwash but my surgery is not the greatest have been declined a couple of drugs that really helped the pain was told there was a shortage of them and they subscribed ibuprofen that I wont take as the hospital were not keen on me having anti infamatries 

Now the hospital on the other hand have been absolutley brilliant and prescribed the drugs I wanted the haematologist department  have some fantastic Doctors and nurses who are really helpful

Can't wait to get the treatment started but as the day draws close (tomorrow) feel a little nervous, I do have fantastic support from my wife my children and all my family although my children and family are scattered around the country 

Oh and I don't pay for prescriptions I'm old enough not to :-(

Thehighlander
Posted by

Good morning , It's important to remember that your primary care is now through your Heamatology Team and what they say goes.

So you can point out the issues you are having with your GP and they will make sure that you get the meds you need. My GP was great but I was having treatment with other folks who found their GPs not to be that switched on and a very strong letter and phone call from the Heamatology team was had and all was well. A lot of GPs do not understand the technicalities of blood cancer treatment and have to be brought on board as it is a balance of meds.

You will get told so much information so we always recommend a good old note book to keep notes if everything and also to record all the questions you need answers for and make sure you have the contact information if your Specialist Chemo Nurse as these folks are your new best friends.

As I said, once the chemo goes to work it is basically like unblocking the build up of bad cells in your body so keep drinking the water to flush pur your kidneys.

I had a PICC line inserted to cover all my cycles so did not need the regular Cannulas put in every time. But when I had to have them I found this to be the worst part compared to some of the Chrmo.

It will be over and done before you know it.

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

BedrockFred
Posted by

Hi Highlander Yes we have the numbers for the Specialist nurses and have had lengthy conversations with them already, must say the Haematology team have been great so far I have mentioned about our surgery and the problems over prescriptions so hopefully that's in hand

As the day nears I must admit to feeling a little nervous

Thehighlander
Posted by

Just remember that all the other people around you are in the same boat and I meet some amazing inspirational people over my time.

A good book or some music on a phone/tablet will help pass the time and you will be out before you know it.

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

BedrockFred
Posted by

Well today's the day  treatment begins, just like to say thanks for the replies and advice on here much appreciated 

johnr
Posted by

If you are up to it let us know how it goes and be prepared for a long day

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

Go kick this into the goal....... I drove my team crazy at times as I was like our 4 year old granddaughter yesterday "Why do that? what is it for? what is it made from? where did you get it?...." Lol

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis