Hi all,
My dad has recently been diagnosed with NHL and shortly after finding this out, he had a mini stroke. Luckily he hasn’t suffered many of the symptoms of the stroke, but his red blood cell count quickly declined and he’s constantly stuck to a drip. My questions are: Did anyone find it difficult to consider treatment? And what swayed them? My dad isn’t the most optimistic anyway and I’m trying to stay positive but even with the first round of chemo he’s fallen ill and it’s difficult to know what’s going on between the transfusions, chemo and then most recently finding out his kidneys are struggling to cope. Our doctors are optimistic but every time he gets excited to come home, they tell us they’ve found more out. Are there any outlets people found more helpful for those with cancer and those supporting? He struggles to walk as he gets easily breathless and he has a visual fog from the stroke and can’t do his favourite activity which is reading and even though it’s been about a 2 weeks since finding out, he loses hope quite quickly. Can anyone else relate to being hesitant about chemo? If so, what helped and/or swayed you? Additionally I’m 20 years old and currently live alone with my dad, I want to see friends but also get sick quite easily. I don’t want to make his situation worse but home feels so lonely without him. Any advice on this?
Sending love to all fighting and supporting <3
Good morning AkM and a warm welcome to this corner of the Community although I am sorry to hear about your dad. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with my rare (7 in a million) incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your dad’s do appreciate the challenges of this journey rather well.
A few questions:
How old is your dad?
What hospital is he being treated at?
What ‘exact’ type of NHL does your dad have?…. as there are over 60 types and sub-types of Lymphoma
What is the ‘exact’ name of the treatment regimes he is having?
As you your questions:
Did anyone find it difficult to consider treatment? And what swayed them?
As I said my journey started way back in 1999 (My story is rather complicated so you can See my story here)
But as my type of NHL was slow growing the treatments I was having were not that bad but were relentless and went in for good 14 years…… then in late 2013 my type if NHL changed and became very aggressive so the only way forward was my treatments had ti be more aggressive.
My wife and I sat with both my Heamatologist and my Stem Cell Transplant Consultants and they were very to the point……… “Mike if you have any hope of seeing past the next few years the plan we are proposing may well do this….., if it does not work then you would go onto palliative care and would have a years or so left”
So there was no real choice other than roll the sleeves up and go for it…. but I am over 8 years out from my last treatment and I am turning 68 in Nov and doing great.
If you are in the UK you may want to check out Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms with a few groups specifically for caregivers .. 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 you could be linked up with someone who has walked the same journey as a caregiver.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
Happy to chat more ((hugs))
Hi again AkM …… a lot has happened over these few months.
Bendamustine & Rituximab is a ‘normal’ first line treatment for some low-grade NHLs so let’s look for this to get things on the right track for going into the Stem Cell Transplant (SCT) process.
I will say that the road to SCT may take some time as your dad would have to be brought into a position both medically and physically for the door to SCT to be opened.
There are 2 types of SCT….. the first is an….. Self (autologous) stem cell transplants where your dad would be put into a period of remission, his ‘clean’ Stem Cells are harvested (like giving blood) and once his immune system and bone marrow is ‘switched off’…… this is done using some very strong chemo…. then his 'clean’ Stem Cells are are put back into his body (like a blood transfusions) and his all new immune system grows with the view that his cancer cells have been removed from his body.
The second type of SCT is the more challenging Donor (allogeneic) stem cell transplants where the same strong chemo is used to switch if the immune system and bone marrow then you get Stem Cells from a matched donor.
I could not be put into 100% remission so went into both my Allo SCTs with active cancer….. and I was fortunate that my big brother was a perfect donor match.
You need to continually encourage both your dad and indeed yourself that this can be done…. Yes there are going to be bumps in the road but the intensity of the journey and treatments is fit the greater good.
You will see from my story that I had my second Allo SCT back in Oct 2015…… a month before my 60th birthday……. I am now 8.5 years on, turned 68 last Nov and am living a great life ((hugs))
