Hi everyone. Just wanted to join you to help me understand what I’m up against. I’m 68 and 2 years ago had the shock of discovering I have Non-Hodgkin lymphoma B-cell low grade. My immune system is very weak and I get chest infections and any bug going. I am experiencing real fatigue at certain times of the day and just want to sleep. I have a Luoyang who keeps me busy and active but I also am finding that I get very tired more than I used to and other tasks have to wait. I have just done a blood test just for anaemia and also had a chest X-ray and doctor prescribed reflux tablets, so as I haven’t had results back yet don’t know if I’m anaemia. I am currently being monitored by haematology department at my local hospital and this is now every 6 months as previously it was every 3 months so my next review and full blood tests will be done in July. Should I worry about the extreme tiredness right now and can I take something like meta tone tonic. I can’t cope with this tiredness and also I get quite hot.
Hi Rainbow54 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare (Incurable) but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.
From what you have said I am assuming that you have not had any treatment and that you have been on Active Monitoring (Watch and Wait) since your first diagnosis 2 years ago?
Good that you have had yourself checked out. Anaemia can cause tiredness so let's see what your blood test says...... honestly, if I was in your shoes I would be calling this into my Haematology Unit to talk with them.
Low-grade non-Hodgkin lymphoma develops slowly and often we are not aware of the changes so anything new should be reported to your team as these can be seen as B Symptoms developing.
Always around to help more or just to chat ((hugs))
Hi, the vitamin B12 may help so worth a try.
I am not on any treatment at the moment.... my last treatment was back in Oct 2015 and have been in remission since then (You can see my story in the link at the bottom)
I turned 67 last November and I still have a nap now and then during the day..... but I learned to set an alarm so that I did not sleep over long as I found that this significantly helped my nights sleep..... and yes, I am still up once a night when nature calls.
Do mention the tiredness to your Haematology Team....... would you say that living with your Lymphoma is stressful?....... I say this as fatigue and tiredness can actually be a side effect of this.
The links I put up are all taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
The Lymphoma journey can be a lonely one so 'talking' can help.
They run regular Support Platforms with groups for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups that are most are online at the moment.
Always around to help more or just to chat ((hugs))
