Is there anyone out there with experience of or has had NHL (Non Hogkins Lymphoma)?

Hi

As the title describes i am looking for anyone that has or has had experience of NHL, either first hand or a family member has it as i am looking for someone to talk to about things as my mum has been diagnosed with it and is starting her 2nd round of chemo next week!

So if there is anyone out there that wouldnt mind me bending their ear or just telling me their story i would appreciate it, plus any advice or hints on how i can help my mum along the way i would appreciate that too!

Thanks

Parents
  • Hi don,t cry

    I had NHL back in 1997 (aged 56) with a tumour in the neck and was treated with Chemotherapy and Radiotherapy.

    I was advised to exercise so I bought a bike & took up lawn bowls as well as a bit of golf.

    Good Luck and be confident

  • My mum is starting her next round of chemo on wednesday, apparently she is on the strong dose cos her body can take the higher dose, dont know if thats a good or a bad thing, her hair is falling out really quickly and she is really upset about it, she has a nhs wig bt hates it, she cant stand anything on her head as she gets agitated so wearing a wig is really upsetting her!

    Was the excercise to get u fitter or does excercise/activity help with the process?

  • Hi,

    I've had NHL 3 yrs ago.

    The chemo aint so bad, but i suppose it depends on which version you get, and which variant of NHL you have is a factor too.

    I had CNOP (a version of CHOP) which wasnt so bad really. It did make me feel very very tired towards the last few sessions though, even gettin out of a chair was a struggle.

    Watch out for infections/bugs whilst on the treatment too.....a minor 24 sickness bug which the kids shook off in a day put me in hospital for 10 days.

    Good Luck and best wishes

    Mark

  • From Lungho777

    I have to stress that I did have a smooth ride with the Chemotherapy and Radiotherapy. I had spells of sickness and most of my hair did fall out quickly but I do not remember any pain. The exercise I mentioned was for after the treatment with the advice that it helped the return to normal health. I fully understand what you and your mum, especially, are going through 24 /7 but the success rates for NHL are very high.

    I did not mention before but this year I was diagnosed with lung cancer (no link with my history of Lymphoma). On September 23rd I had a Bi-Lobectomy which is the removal of two lobes of the right lung. I am experiencing problems with my breathing when out walking (very slowly) but have a wonderful wife who looks after me amazingly.

    I have every confidence in the NHS that I am going to be OK and I feel the same for your mum so please send her my spiritual support and for you, be strong and confident, you will both be OK.

  • I responded to Crying 24.7 November 2010. Firstly how are you now ? I was told the survival rate is very high so I hope you have done well.

    I had also mentioned that I had lung cancer in 2010. It took a long time before I could walk more than 50 yards without becoming totally breathless. I never ever played golf again but a year later returned to playing bowls, outdoors mainly. An indoor exercise bike and regularly out with my wife and the dog. Many times I just stayed in the car but if the wind was light I persevered. Today I am used to never being able to breathe life average Joe but am very happy to be able to lead a fairly normal life.

    Every day I think back and feel lucky. I feel for anyone going through the rigours of lung cancer.

Reply
  • I responded to Crying 24.7 November 2010. Firstly how are you now ? I was told the survival rate is very high so I hope you have done well.

    I had also mentioned that I had lung cancer in 2010. It took a long time before I could walk more than 50 yards without becoming totally breathless. I never ever played golf again but a year later returned to playing bowls, outdoors mainly. An indoor exercise bike and regularly out with my wife and the dog. Many times I just stayed in the car but if the wind was light I persevered. Today I am used to never being able to breathe life average Joe but am very happy to be able to lead a fairly normal life.

    Every day I think back and feel lucky. I feel for anyone going through the rigours of lung cancer.

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