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Non Hodgkin's lymphoma refusing treatment

Nmp
Posted by

Hi everyone

I want to talk about my dad . He has recently been diagnosed with non Hodgkin's and has refused chemo. He is 70 years old and also has schizophrenia and says his quality of life is poor due to poor mental health and digestive probs  and he is virtually a recluse as he lives alone . he says his only quality of life is going out with us kids and his grandchildren. He doesn't have or want friends or go to any support groups. He says he accepts he only has a year left to live. I live 300 miles away and have young children of and recently divorced so its hard to visit my dad. My dad says chemo is a 'shot in the dark' and he dosnt want toxins pumped into his body or the side effects . I feel helpless about this and can't accept his decision as I'm very close to him. Thank you for your support. 

src60
Posted by

Hi and welcome to the community though sorry to hear about your dad jt does sound as if he has some problems to cope with and adding in the lymphoma I am sure has not helped. I am not familiar with lymphoma and the effects of treatment or not but perhaps if you introduced yourself on the Non-Hodgkin lymphoma - Discussion Forum somebody there might be able to give you more information.

If it helps you then please feel free to ring the helpline here 0808 808 0000 is is open 8am to 8pm and is a free call from landlines

<<hugs>>

Steve

Thehighlander
Posted by

Hi , I am Mike  and I help out in the Non-Hodgkin lymphoma - Discussion Forum that my friend Steve  has highlighted.

I have lived and been treated with a rare type of Non Hodgkins Lymphoma NHL for over 20 years and I am still around.

I am so sorry to hear about your dad and the issues you are facing. I have to say that even at 70 years old his type of NHL may well be treated positively. It does depend on the type of the NHL and how it is developing.

The end of 2013 my condition became very aggressive so it had to be hit hard. I had to have 6 cycles of chemo, each treatment required me to be in hospital for 5 days on chemo 24/7 by the end of my 6 cycles (4 months) I had over 750 hrs of chemo and the only side effect was progressive fatigue, but not bad that I could not get on with my life, no sickness, was eating well and apart from a week long stomach bug, no infections.

If you look at my profile  you will see that I had to have further treatment but this is not the normal route for folks with NHL.

So what his mind is saying about the treatment of NHL is not normally the case. Yes it can be tough but normally do-able. Some people have targeted treatments that are not chemo.

It would interesting for you to find out from his team more details like:

What type of NHL he has?

What stage it is - although in blood cancer the stage is not a problem like in solid tumour cancers as the sated give his team the info for the best treatment.

What type of treatment would they use and for how ling?

What the prognosis is for him with or without treatment?

The folks on the NHL Forum will be able to help out with regards to the treatments but the big challenges is his understanding of what this is actually like.

I don’t normally post in the forum but will be happy to answer any further questions you have or you can come over to the NHL Forum and introduce yourself to the group.

((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Nmp
Posted by

Dear Mike,

thank you so much for your great message, it has made me feel positive and empowered.  My dad says he doesn't have a tumour and as far as he knows it was all contained in the lymph gland, which has now been removed.  He wonders if he still has the cancer, but the doctor is sure it is still in the body.  He doesn't seem to know the stage and the prognosis is a year without treatment.  I have suggested other forms of treament with him (I used to be a medical professional myself in the NHS).  He is not sure of the prognosis with treatment and is not keen on knowing either.  It is 'high grade non-hodgkin diffuse b cell lymphoma' .  I will also join the lymphoma community.

Best wishes,

N

Thehighlander
Posted by

Hi again  and I am pleased that you found my post helpful.

We do have a very active Diffuse Large B-Cell Lymphoma with some great people active in it.

As you worked in the NHS you will know that blood cancers are treatable. On the whole you just can cut out Lymphoma - it has to be treated in the blood and lymphatic system.

My T-Cell Lymphoma became very aggressive, but the staging, I was 4a2..... is not normally an issue apart for involvement in organs.

I will keep an eye open for you.

Edit - just seen you have found the DLBCL Forum - great.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela