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Hello Lymphoma diagnosis here

MarkyT
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I'm a 57 year old male recently diagnosed with Lymphoma - specifically Stage 4 Nodal Marginal Zone Lymphoma - one of the rarer ones.

Diagnosis came after I was admitted to A&E with chronic anemia in September I had a  blood level half what it should be. Eight days later I was discharged from Hospital with a tentantive diagnosis of low grade lymphona and after some further outpatient tests was diagnosed with the above which had spread to Bone Marrow ( but not spleen) so causing low blood production.

Started chemo last week -  two days every month for six months and loads of pills - antiviral, fungal and gastro related mostly I think.  I felt dreadful for most of last week - fatigue and nausea mostly though feel a lot better now. A blood test yesterday gave blood levels up  from previous however since then in  conjunction with the Chemo  I've was given 4 bags of blood  so not sure if rise is mostly coming from those.

I'm reasonably optimistic about treatment but of  course we shall have to see, it is a pain generally however as I'm still too fatigued to do anything very useful yet so life is 'on hold'. Also some irony as my father died in August and  for about three years I had been taking him for cheno/radio treatment then monitoring tests for a different lymphoma type ( Blastic Mantle Cell). His Lymphoma wasnt the sole cause of his death as he also had dementia and  pretty much stopped eating. He was of course older.. in his  late eighties.

So last week for the first time I walked into THAT hospital room with the comfy chairs and the drips  for my treatment  and felt rather strange about all this.

Anyways hello again and all the best  , I've a few odd questions which I will post online if I cant find smilar/answers on forums.

 

Regards

Marky

 

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    Hi there ... it must have been such a shock after loosing your dad ... life can be cruel ... can't give you much advice or help but wanted to welcome you to our little chat club, and it's somewhere where we can write anything and someone will have had the same feelings / emotions and can help you through ... there's quite a few on here are  going through cemo too ... so hold on in there ... take care , Chrisie x

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    Hi Marky, I am sorry to hear about your diagnosis. My mum has recently been diagnosed with nodal marginal zone too but we are not sure what stage she is at. Hers was picked up due to unusual blood test results. I wish you well with your treatment. It would be good to keep in touch. Sam
  • Offline in reply to SPS82

    Hi - I have finished my treatment  and have now been told that I am in remission!  I obviously pretty happy about that and now looking forward to  living more than a week at a time.

    I will be coming back for check up every six months and of course no one able to tell me how long remission may last ( does any doctor ever use the term 'cured' re cancer??)

    Looking back treatment was very tiring and for me had more impact in terms of side effects with each treatment, not helped in that I had an allergic reaction to the Rituximab. But it was bearable and better than the alternative. Staff at NHS were of course excellent - only saw a  hospital Doctor twice -  at initial diagnosis and to tell me about results of treatment - otherwise  it was nurses who seemed to know all about treatment etc.

    Feeling tired - though this may be just lack of excercise/diet ?! Only other  two major side effects still bothering me are a dry mouth - much water and sucking of sweets needed and  tinnitus in ears ( which does seem to be improving ). Doctor seemed surprised when I informed him of these - but they werent present before cancer presented - will monitor and report to him and next check up.

    Sam - hope your mum is ok and  if she if is having treatment its as successful as mine has been.

    Mark

  • Offline in reply to MarkyT

    Hi there Mark. .

    Well high 5 to your remission. . That's amazing ... and think your right, don't think any one can ever really say cured as once we have that dreaded word cancer, it always stays on our shoulder ... but you take every day you have now as a gift, look at things differently, take nothing for granted ... see the good the world, it is there if you know where to look ... cancer can change our outlook for the better ... hold on to people who stood by you and held your hand ... they are true friends ... 

    Sending you a big vertual hug Chrissie x

  • Offline in reply to MarkyT

    Hi Mark,

    I am very happy that your treatment has gone so well and you are in remission. I also hope the dry mouth and tinnitus has cleared up. 

    Hope you have now managed a well deserved holiday.

    My Mum is still well and we are on watch and wait. 

     

    Keep in touch 

    Sam.

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