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.

Latest treatment options relapsed indolent follicular lymphoma

Thehighlander
Posted by

Hi Ann, when you say PDT are you referring to Photodynamic therapy. It can be used on the face but as I am not a medical professional I can’t say if it’s suitable for your condition. Have your team be talking about this?

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Doh
Posted by

You could ask for some treatment and refer them to the NICE guidelines.

The treatment I had cleared up some symptoms that I wasn’t sure were related to my condition.

No guarantees though devolution means different areas like Wales, Scotland, Northern Ireland want to do things differently

Usually worse.

purrwoman
Posted by

Hi Did you have treatment I’m 63 been in wheelchair or scooter many ye ars my Lymp problem both sides of my Aorta

Having terrible pain feels like in my bowels had boiling urine for a while but I’m on watch & wait nobody giving me. Any real information , did you get treatment because I feel dumped as I’m disabled over 60 plan to try again 3 time of asking for second opinion  

purrwoman
Posted by

Follicular Non Hodkins Lymphoma Stage 2B

means very little to me but over phone I got told I had it in lower  part of my Aorta both sides went see them with breast growth well 1 my eldest daughter saw , no treatment nobody to help not given anybody to talk to been dr 2 times with pain feels like in bowel but there working some days I can hardly move I’m already very disabled life just feels bad I’m happy in myself just Treatment by Dr & oncologist is rubbish no real explanation no real talk no second opinion I have asked for more than once feel rather ignored I sweat so much but I realise that’s normal , just very unhappy at medical system having been ill long time had great treatment from spinal unit & other specialist finding oncologist total waste of time sad really d   

purrwoman
Posted by

Got no team far as I now ?

purrwoman
Posted by

Sounds like you got great Oncologist I truly wish you the best mine is not v dry good deffo not on the ball for explaining giving me team to talk to nothing with I had You people sound wonderful  Good Luck truly wishing you the very best 

I would so like to wake up with just my normal disability this is unknown & no explanations of there decisions is making my life so very hard but I will keep living they get it wrong they will get Publicity , that I’m deffo on been keeping record of there not great treatment or explanations , sad I have always had great dr specialists for my Serious spinal I jury , but I will just go emergency in decent hospital soon if there not going to improve there Welsh rubbish behaviour

Thehighlander
Posted by

Hi again , so sorry to hear that this is getting you down. Follicular Lymphoma (LINK) is the most common type of low-grade NHL and develops from B cells. The abnormal B cells often collect in lymph nodes (glands) as follicles (clumps).

Have you ever been seen by a Haematologists?..........A Haematologist is the expert in blood cancers and the best people to make sure you are treated in the very best way.

Have you had a biopsy done of any of your growth areas?

Have you had a CT or PET scan?

It is important that you get clear information. From what you have posted you are on watch and wait, this means it is in your best interests to keep an eye on your lymphoma and to save treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

It is clear that you have not been given clear information and you need this.

Have you a contact number for your clinic? if you don't, you go back to your GP and ask for a referral to Heamatology.

As always, I would recommend that you have someone with you at all appointments - two pairs of ears are better than one.

It may be a good idea to start your very own discussion - Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion.

Getting a second opinion is always an option (LINK) but it may be that you just need to be seen by the correct people.

I see that you have posted a question to our Nurse team - they will get back to you as soon as posable but it does often take tow working days.

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.

Keep posting as we are here to help as best as we can. ((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

johnr
Posted by

Hi purrwoman, are you being treated in England or a different country as your experience for England sounds odd.

Let us know where you are being treated and we may be able to offer some more detailed advice on how to resolve some of your concerns.

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

Hello purrwoman,

You do sound like you could do with a bit of helpful support!  Are you getting seen for this disease in Velindre?  I know that's the specialist place, but Wales is pretty rural and it's not always easy to find the right help you need when you live in the countryside. 

Oncologists can be seeing patients a long way from specialist centres.  The care network gets a bit thin in places like rural Cardiganshire &  Gwynedd.

Cecren

Anniesue
Posted by

Hi

I live in Pembroke and I have had the most amazing support from my Haematologist/Oncologist at Haverfordwest. I really don’t know what to suggest only that you telephone McMillan to let them know what is going on to see if they can help in your area. I have one more test which is the Bone marrow test next Weds and providing no Lymphoma  found there then I will be set up for Radiotherapy. Otherwise, if more found then it’s Chemo. I am looking into Photo Dunamic therapy if the treatment is just to be targeted on my face. I am 63. This is a relapse. I really hope you can get some support as it sounds as though you have fell through the loop  

Ann

purrwoman
Posted by

Ceredigion but on list to go morriston for second opinion, I’m learning to live with it but body is a bit fragile like a bad tooth abscess that’s keeping coming back but I’m already disabled so it’s hard bidet going in this week , got a Bad Dr in surgery must be worst there is has no bedside or phone manners left me in tears phoning practice manager he was truly useless , system in Ceredigion is really bad , think they want you dead less expense .Just does not listen to me and it’s my body that I kind of know better than him , he is a casual fill in Dr not much use my Drs have all retired job to much now left with the dregs or so I feel but I will survive without them , 

purrwoman
Posted by

Ceredigion & waiting for second opinion at morriston , my problem is I’m already badly disabled this is just the last topping on cake so to speak & dr all part time or reduce treatment save money that’s Ceredigion I’m afraid I had heard it was bad but been a shock as was Great area now it’s just Dr nobody else wants .

purrwoman
Posted by

Aberystwyth It’s a Student town they come first even though they pay no rates no tax there university contributes nothing to medical services , & even law is different for them they brake in drunk terrify old man judge says (They come from Good Home) 

should have got 2 years if local they take up the medical money drunk on Pub crawls yes organised ones when they start university to get used to best pubs , I thought they came took all the let’s & medical space to get educated but they just seem to party were small Victorian town there costing more to community than they give 

sad but people suffering so they can vomit in casualty most weekends

yes I sound cross they need to get university to pay for each student that comes .