Hi my name is mummins , I’m new to group. I was diagnosed in February with stage 4 follicular lymphoma. You could have knocked me done with a feather! It’s taken some coming to terms with but I’m not giving up. I’m 62 and was just about to retire.
there’s a chance of remission with chemo so I’m taking it!! I’m on cycle 2 of 8 now. Cycle 1 was ok but I had severe chest pains whilst in the bone marrow injection period. Leading me to be taken to A&E eventually . I thought I was having a heart attack. I was told it was not my heart but most likely oesophageal spasms caused most likely by the injections. This seems to ring true as the pains stopped the day the injections stopped.
I’ve been told by a previous chemo patient that anti histermines can lessen the pain the injections cause. However I’m a bit nervous to follow this suggestion as I’ve read that the injections contain histermine to make the bone marrow work hard producing new white blood cells. If I take these tablets therefore will it lessen their effectiveness to do so?
thanks in anticipation xx
Hi again Mummins and well done navigating across to this corner of the community.
As I said in your first post in the New to Community I was on these injections for a good few months and regular Antihistamines (prescribed my my clinical team) definitely reduced the bone pains for me and made no difference to the effectiveness of the injections.
I was diagnosed with my type of Low Grade NHL way back in 1999 when I was 43 and although I have had a lot of treatment over the years I am now coming up to my 6th year in remission..... you getting the smile (Hit my community name for my story).
Yes my type of Low Grade NHL like many other types of Low Grade NHL are incurable but remain very managamble.
For good reliable and up to date information do check out the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information and online resources.
They also run regular very supportive Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where you/people can be linked up with someone who has walked the same treatment journey.
This following link will take you to the Lymphoma Action info on all things Follicular Lymphoma.
As for your stage 4 diagnosis, I was stage 4a back in late 2013 and here I am talking to you over 8 years out and living as good a life as any 66 year old can. The 'thing' to get from this is that in Lymphoma stage numbers are used to identify where your Lymphoma is presenting, what treatment is the best and for how long.....unlike other cancers like Breast, Lung, Kidney...... the higher the stage number the worse the prognosis
Do look forward to your retirement as there is a future before you. I retired at 55 as my demanding job was not good for my type of NHL as the stress affected my well being and in turn my medical condition.
Happy to talk more at any time ((hugs))
