Affected by NHL? Join this group to share experiences and ask questions to people...
i am almost certain that my biopsy will confirm relapse of my NHL Follicular Lymphoma Indolent. 2011 I was diagnosed and had both tonsils and lump in neck removed all cancerous. Been on watch and wait since then. 2 months ago found lump in parotid gland at side of face next to ear. Scan showed two lumps. Before I was diagnosed before I suffered for a very very long time with “bone weary” fatigue, itching and cough. My fatigue had slowly been getting much worse of late and I just put it down to having NHL. I realise now that it has been getting worse probably because I have a relapse. Two things I would like to ask: does anyone else suffer with constant fatigue and it gets worse on relapse and what treatment is usually given with a relapse.
Hi again Anniesue, good to see you have found your way over to this corner of the Community.
Just to put in what I said in your New to Community post. I was on W&W for a long time, yes I was getting skin treatments as I had a skin Lymphoma but apart from that no fatigue, night sweets - nothing. But that was no indication that my condition was actually getting worse over the years as it was...... but FL is different so let’s look for the FL folks to pick up on your post.
Depending on what the biopsy says there are a number of routes that this can go on but again I will leave this for the FL folks to give you their first hand experiences.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi, sorry to read your worries about relapse are they going to scan you to check what may be going on? or just waiting for the biopsy results? If you have relapsed and you did not have any treatment first time round then that may bode well this time as the are more options now compared to 2011 and various trials looking at different combinations.
To second guess the treatment is hard but to give you an idea, it may be they look at a non chemo route and may try rituximab or a combination, radiotherapy may be an option or one of the chemo combinations. A lot may depend on how you are and how much longer they may want to keep you on watch and wait.
As for fatigue it is a B symptom, when I had it with DLBC some days were worse than others but that general feeling of tiredness never left.
Many thanks for your response. It's good to know there are more options than just chemo or radiotherapy to look at.
Ultrasound and biopsy this Wednesday. I will keep all updated with my progress.
I am just recently diagnosed but I’m so Tiered my bed is wet I’m wet I shower 2 times in night , food smells horrible gave up meat year ago before I knew I had This stupid disease , I do not undersnd watch wait wait for what I’m losing weight I feel like you nobody explains anything I hope this group will for I know no doctors understand they just give me aluminium spray which is supposed toause cancer ,when I have it , I’m so tiered I have bowl cereal as it’s all I can manage to do so yes I know how you feel I am not even getting chance of help
Am I supposed to Cary on I do not now I hope this group watched while can help me .
Hi purrwoman and welcome to the Community.
I am so sorry to hear the issues you are facing l, lots of folk will understand where you are coming from and how you feel.
Watch and Wait can be a very hard time as you think that treatment could just be given and that’s it but it is often far better to hold back and only use treatment when it is needed. But it does sound like you are having a hard time.
I would advise that you put a call into your Specialist Nurse or your Consultant and arrange a meeting.
You do need to talk through the challenges you are having as these are the only people who can give you a clear answer as to what the plan is for moving this forward.
It is important to keep open communication going so your team are aware of what is going on with you and you do need to be assertive in looking for answers as this is the only way you can fully understand and see the way forward.
Sone folks can be in W&W for a long time - 14 years with my rare type of NHL but the time was right to move things on with some very strong and long treatment.
We are always around to help out.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: