My husband was diagnosed with Lymphoplasmacytic lymphoma in 2019 and had 3 cycles of chemo before was told in remission. Last review was end of August next due end of December This week went to GP as feeling tired and "not right". Three sets of blood tests later and a physical exam with cancer consulatant told has an enlarged spleen and blood tests show further treatment needed. Consultant then rang late last night to say had arranged for husband to have a bone marrow biopsy on Monday and waiting for a date for CT scan. Whilst pleased things are getting looked at with pace its also scary. Previously it showed up in bloods and bone marrow but now I am extremely worried by the fact that it appears that spleen is affected. Does anyone have a similar experience or can advise me on likely prognosis. Thanks in anticipation One very scared newcomer to this site.
Hi and welcome to our corner of the Community but sorry to hear why you have had to join.
I had a totally different type of NHL and have had numerous relapses over my 21 years and although back in 1999 I was told “Mike, I am sorry to tell you that this is incurable, yes treatable but you will never be in remission” but after many years of treatments, in September 2016 I was told I was in remission for the first time in 17 years and living the dream.
I say this to highlight that there is always routes out there to get things back on a positive direction.
There have been a few folks with his type of NHL so let’s see if anyone is still looking in.
The BMB and CT are important to check what is going on and possibly to check that his type is still the same or has it transformed into one of the other types of NHL
We obviously can’t give any prognosis as we are not in any way trained but I have always taken the view that when the first line treatment does not work we move onto the next... and the next.
Always around to listen and support.
((hugs))
My main chemo before going into my two Stem Cell Transplants (hit my name to see my full story) was December 2013 and as I was an inpatient for 5 days for each of my 6 cycles I had last of time to talk with lots of 70+ and 80+ year olds going through some very strong chemo, some who had relapsed and they did very well.
I quickly came to realise that I was not in control of the treatment side of the journey but had complete control of the battle between the ears.
I am a total believer that when we arrive on the cancer road there are two signs placed the length of the road.
One sign points to Pessimism a mindset that always sees the worst will happen, where you let stress and worry control every aspect of your life and as a result the journey is made very hard.
The other sign points to Optimism, a mindset that is full of hopefulness, determination and confidence about the future...... It’s important to continually seek to choose the optimistic direction as this simple thing can define how you walk the cancer journey.
Always around to listen and support.
