Recent diagnosis

Hi Jess, well done you navigating over to this corner of the site. You have found a safe supportive place to get information and support.

As I said in your New to Community post, blood cancer are on the whole very treatable, yes some treatments can be hard work but the results can be great and it’s all about keeping your eye on the end game.

The black thoughts are normal, but the more you understand about FL and the more stories you hear and read........ the noise in your head will calm down and the future gets bright again.

Making the yes or no to treatment is hard. As I said I was on W&W for 14 years but my skin Lymphoma was rare so did have lots of skin treatment but no chemo. It all changed in 2013 so we had to get the big guns out,

I think you have to balance the B Symptoms as to what effect on life it’s having at the moment.

FL can be very slow growing and some folks can go a good time before going into treatment,

What chemo are they taking about using along with the Rituximab?

I had R as part of my treatment and did great with it. Indeed I did ok with all my initial chemo, no sickness, no infections, yes the fatigue built up but that could be controlled....... so don’t overthink this as being something that will be horrible as this is just not the case now........ but as my treatment was very strong (see my profile) I did lose my hair - but us back now.

I am sure that some of the others will pick up on your post.

Have a go at putting something in your profile.

Keep posting as we are here to walk this with you ((hugs))

Hi Jess and sorry to see you have had to join us and don't worry about what you post, we all understand as many of us have been there and totally get the feeling guilty when you tell family and friends, its all normal. 

Whilst this type of lymphoma is not curable it is treatable and having lymphoma is not a death sentence, some people think of it like a chronic disease that needs treatment when it flairs up. Blood cancers are ver different to solid tumour cancers so staging is used to decide and inform treatment plans, I was stage 4 for a different type 10 years ago and I have met quite a few on forums who can go 10 to 20 years between treatments. 

28 is young for FNHL and trying to decide whether to start treatment or not will not be easy, some people like to get treatment underway straight away and others try to wait until it become necessary and your B symptoms will complicate that, ask questions and check things out so that you are happy with your decision once you make your mind up. Have they explained the range of options and why they think B & R is best at this time and did they explain once a treatment has been used it cannot be used again so if your FNHL returns a different treatment will be needed, that's why it becomes complicated. The are some newer treatments to which are showing longer remissions but its still early days but worth asking about them.

As for treatment whilst not nice its do-able and once you have decide and if it it to have treatment we can share lots more and how to manage it.

Any questions just ask the is a good bunch of people in the group who have recently finished treatment and they will share their stories I am sure.

John 

Thank you so much for the replies and for sharing advice and thoughts. I think it is the word "incurable" which is freaking me out so much, but I like the idea of thinking about it like a chronic illness with flares and periods of remission.

I'm not sure why they recommended this specific treatment pathway but they did explain about not being able to use the same treatment again, which obviously could be a reason to go for the waiting approach. I am waiting for bone marrow biopsy results also, which may have a factor on the treatment recommendation I guess. They seemed concerned about my B symptoms (the weight loss and the night sweats particularly) but I've not really been feeling unwell. I have been a little tired and dizzy and getting breathless, but it seems likely that is a result of the low RBC. Meanwhile my GP prescribed me these nutrition drinks because I was quite underweight and this has at least stopped me losing weight.

I'm very scared by the idea of chemo and I'm worried I'd have to give up work and I wouldn't be able to look after my daughters... just a bit brain-scrambled at the moment, really!

Hi again Jess.

In my mind it is all about how you 'position' yourself, your thinking with regards to all this.

As John has said 'treatable but incurable'........ but if you think about other chronic conditions like Diabetes, Arthritis, Psoriasis, Heart conditions........ these are all treatable but incurable (at this point in time) and people live long and happy lives with them.

In 1999 my consultant told me that I would have to live all my life being treated like I have very bad Psoriasis, I would never ever see any times that my skin was in remission, never having clean skin and at one point in time my type of NHL would get me............ fast forward to 19 September 2016, I was told I was in Remission and NED (No Evident Disease) - the first time in over 17 years.

I am under no illusions that it may not come back again but I do intend to love and live life to its full.

Chemo - don't overthink this, don't listen to old wives tails and old stories on Dr Google....... things have come a long way. We know people who have worked through their treatment with little effects...... but every journey is different.

I had extreme chemo, you went have anything like this. I had to be in hospital for 5 days/nights at a time so over 120hrs on chemo and I had to do this 6 times over 3-4 months.......... I did not have any real issues, never sick, eating well....... yes my hair was like snow on a warm day but that was short lived.......... it was all about the greater good in getting through this. 

You will have lots of questions, getting answers can reduce the brain - scramble. We can answer some questions but its all about getting clear info from your team.

Could I recommend that you prepare for your next appointment with your team. I would always recommend you get a 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.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explain that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.

I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.

We are around to help.

This could be a picture of living through a cancer journey.

Thank you so much - this is really helpful. Especially about the notebook and coffee after the appointments!

Hi Jess, see this as a long game and the good news is new drugs and treatments are being developed and they understand the varying types of lymphoma much better now than when I was diagnosed and especially since Mike was. So the future may be that they find a magic cure, who knows but 10 to 15 years ago a drug called Rituximab became a game changer for us all and I am sure the will be another on the horizon. A combination called B & O is proving effective in extending periods of remission but its still early days for that combination and the are 2 or 3 in the group who have had it. I won't overload you at present but the range of drugs available can do all sorts of things and not all are chemo, some block signals, some weaken the cell structure to allow other drugs to kill off the disease and to allow your immune system to do its job. Which combination you get will determine how straight forward or difficult treatment may be. Some people cope well and work during treatment others struggle and at times your immune system may be compromised so going to work may not be the best thing as your risk of picking up an infection is higher.

The best advice is take things a day at a time and as all the questions you need to you will get your head around it eventually.

Not being able to use the same treatment again is wrong.

It can, it just depends on the circumstances.

Hi Jess, 

I haven’t posted before but your situation seems so similar to mine, although I haven’t had b symptoms yet and my lymph nodes aren’t too bad. I was lucky in them at mine keep popping up in my skin, not my lymph nodes for the moment.

I am 37 now. I was diagnosed 2 years ago. I also have 2 small girls. My youngest was a baby when I got diagnosed. When I was diagnosed, I didn’t for a second think I was going to get a cancer diagnosis. I thought I had a cyst in my mouth. It was a huge shock. 

I still struggle sometimes more than others. I don’t know that I have anything that I could say that might help just maybe to let you know you aren’t alone and that there is another mum of small children going through something similar, Marge because I’ve felt a bit alone in it all.

 Jacqui

Hi Jacqui, I see you joined a few months back but as this is your first post - welcome.

All help and support is important as it all does help turn the noise down in our heads.

We are always around to help out,

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.

I'm right here with ya..what did u decide