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.
Hi well was truly not happy with Specialist I have so I have asked for Second opinion from Oncologist in a different set of Hospitals I’m in Wales & as I have number of previous illnesses I feel I’m just not worth the effort I told them of problems I have but he said not related to my NHL ok so what is it then , (Do not Now ) Make Dr appointment see different specialist for each problem , this spurred me on for second opinion, now waiting for this ,
I have no idea how on Earth I’m supposed to cope I’m just so fed up decided I would just get on with living so I went on holiday Saw Requiem in Dublin on Death yes I really enjoyed it , Visited Saint Patrick’s Cathedral, Had a Guinness
After Requiem in National Theatre I went back with cast & many others & drank Cocktails, I do not drink but it was first holiday ever just 3 nights 4 days with my incredible daughter She & my son in law paid for flights & transfer I took my disability scooter that folds up in hold & I had a fantastic time came back with a fresh state of mind decided I want to live & have fun I been ill so long I need to enjoy every day if people on death list sorry if I offend anybody but if you can be brave I can just stop feeling sorry for myself , hope second opinion is a bit more helpfull I’m in Wales do not think treatment in my area is of much use , to many are dying for small local hospital most not getting any help palliative care is not happening to people at end of life I have meet , & explanations are few far between thank you all for being so kind I’m truly grateful .I mean that you have said more here than entire Hospita
Hi Purrwoman you need to see a Haematologist not an oncologist and stress the impact the B symptoms are having on life and its possible they will offer treatment, but it may depend on the size of your nodes, but worth asking and yes get yourself a new specialist if you can.
Good morning purrwoman, sounds like you had a great time away. Often a little diversion..... and some Guinness.... can bring a new prospective in all this.
No offence taken with regards to being on a 'list', in reality we are all, in some way, on that list. But some are nearer the top/bottom depending how you view this....... than others. Over the years I have went up and down the list like being stuck in a hotel lift...... but I am still around, on the top floor, enjoying life - and that is important.
As John says, you do need to see a Haematologist as these are the experts in all things blood and blood cancers. Initially had a very good Consultant Oncologist as I had to have some complicated Radiotherapy on my face but he said that once he was finished with me I was going straight to see a Consultant Haematology as he had no real understanding about the complicated world of blood cancers.
He actually said " If I have something wrong with my car I don't take it to a Nurse to fix it?"
I do understand the issues around having multiple medical issues and as a result having to see different departments and consultants, I think I am up to 6 or 7 departments now...... and yes they will only deal with what falls into their area and if required, refer you on.
You need to get your scooter into the doors of the medical profession and look for a positive way forward in this.
Ask about Induction therapy.
You have lots of other health issues and there is no guarantee you will feel any better post treatment.
I know how you feel about watch and wait because I felt the same.
There is no cure for Follicular Lymphoma so it’s back on watch and wait after treatment.
Good luck with your second opinion.
Strictly speaking it's a haemato-oncologist or haemonc you need to see as opposed to a clinical haematologist who deals with non cancerous blood disorders. I see both for different things so have to keep on top of who is who.
Hi I’m on watch & wait , they think I had about 3 years I have lots of itching under my right arm but that’s where I thought it began but under 1 mm so do not count
have both sides of my Aeorta
there big enough to count but watch and wait , I’m so exhausted but keep sweating it’s horrid one minute nice fresh from shower next socking again and so tiered but I had a bidet fitted and strange but it’s so helpful, my Hot urine is getting better and a nice cool wash helps rest of body , strange
I am suffering Dredfull cramps but I feel sillie going to dr with this anybody got any solutions happens all over foot back of knees arms just I often fall due to cramp making my leg or legs give way lucky I only walk on rails in house scooter out so not a problem outdoors advice be good please
Good morning purrwoman, first I would always make sure you are reporting changes in how you are to your team - they are not mind readers and do appreciate information just to make sure they are doing the best for you.
I have had bad cramps all through my treatments and one of the main things I was told was drink, drink and drink water........so I am for 2-3 Lt a day......... Yes you are restricted with your mobility but do try and keep stretching your body - even when sitting down.
I don't know if you are near a Maggie’s Centre as they do simple exercise groups for all conditions including in scooters.
What advise have you been given from your team about the cramps? ((hugs))
Hi, didnt realise cramps were down to this one, I started falling too so will watch out for symptoms. I been concentrating more on Hodgkin's lymphoma. I getting ready for 3rd lot of chemo feeling good at min just tired.....
You are mentioning cramps. I’ve read extensively having had NHL Follicular Lymphoma since 2011. I had Radiotherapy at end Nov 2018. I suffer with cramp all over dreadfully. In what context were you mentioning the cramps?
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