Memory loss with NH lymphoma

Hi I assume your father has dlbc NHL? as that's the group you have posted in, the simple answer to your question is to discuss these concerns with his GP and his Haematologist and see what they say, it may be an mri scan of the brain may be of benefit but its hard to comment on his medical condition as we are not medically trained.

NHL can spread and if its aggressive as dlbc is then with time it can appear anywhere, hence the advice re the brain scan or they could do a full body ct scan to see if and where the disease has spread to, this though will need to be approved by the consultant.

hope you get the answers and peace of mind you seek

John  

Good morning  and a second welcome to the Online Community but sorry to see the issues your dad is having.

I just have to agree with John. You do need to take this up with his medical team.

Could it be the DLBC? well yes, where the blood goes the Lymphoma can in time go........ but having parents this age, it could also be the sudden onset of old age.

Push the doors to get answers.

Edit - Macmillan Information - Getting a second opinion 

Thanks John. Yes it is large diffuse B cell.

what is more galling is that when the “Alzheimer’s”

commenced I queried whether it could be cancer related as the timing was remarkable. He’s be on “anti” Alzheimer’s drugs for a year - which don’t do much for the liver.

his short term memory is now very poor but it’s his Deja Vu sysmtoms that I noticed on line might be more indicative of the Lymphoma.

its a tricky one whatever as he wasn’t at all keen to have chemo but was 100percent sure he didn’t want end up in a bad way in terms of cognitive abilities.

Hi, the problem is we can speculate but that can just create more angst, hence the advice and I guess the other discussion to have with the haematologist is what might be late onset effects of the disease as it takes over and is he at that stage and sorry if thats stating the obvious, but dlbc is normally aggressive and without treatment as you will know its a matter of time, so ensuring he has a palliative care plan in place is key as that would help manage the symptoms as well as inform reviews of his general health and how his body is reacting.

john

Hi John - the consultant’s saw my dad after he noted lumps in July 2017. They noted how aggressive it is to us. My dad was adamant not to bother with chemo as the “lumps were going”.

at the time I hoped he would have chemo but he’s still here thankfully albeit with these cognitive issues. Still independent - except we pay a “carer” to give him his anti Alzheimer’s medication once a day. I put him in for a blood test last August 2018 and result was described as “unexpectedly normal”. So he hasn’t had another one since. Last saw consultant in December 2017 since as he didn’t want chemo it didn’t seem much point taking up their time. They refused to believe that his cognitive issues could be linked for this time of lymphoma. To me this is an error. CT scan didn’t include his head at the time. I think I have to push for a scan since the anti Alzheimer’s medication also has some bad side effects potentially.

Sometimes medics can be stubborn and awkward, I have experienced that with inlaws and Parkinson's and getting a diagnosis, that said sometimes you have to keep pushing and challenging until you get to where you feel things should be or need to be.

Just a thought if the lumps went down that's not normal for dlbc so depending on how they are now and a scan would show that my thought would be to ask is his progress normal for dlbc, and that a scan would show what's going on as the is a possibility that he could have been misdiagnosed, though that is unusual, it does happen as typing lymphoma is an art. I say this due to what you have shared and would normally say ask for the biopsy to be looked at again for a second opinion, but in this case a scan would be a better starting point in my view. For the lymphoma to be effecting him cognitively from what I understand it would have had to cross the blood brain barrier and appeared in his brain and whilst that can happen again it's rare. In the end it may well be his Alzheimer's unfortunately and getting his meds right may be what's needed.

just my thoughts based on life and what we see and learn, but remember I am not medically trained and these 2 diseases are challenging and life limiting.

John 

Thanks John. Yes perhaps I should try and get a second opinion. In some respects I just didn’t want him to go through what seemed to be an ordeal for him - many stressful appointments - when he didn’t want any treatment in the end. The lumps going down was just his opinion - one he himself couldn’t detect. However when he turned down treatment I feared the lumps would get worse and cause him severe discomfort - for which he might want some localised treatment. As it is, he seems to not be bothered by any effects - it’s only cognitive issues - which however was the last thing he wanted.

The hardest position to be in, seeking answers but having to respect the decisions made by your dad as the patient as it has to be his choice.

Is the some middle ground where you discuss having a scan to see what's going on and the current position with his disease and that can look both at the lymphoma and Alzheimers (though not sure that scans help with this disease)and suggest that if a palliative care plan is not in place then the should be and all GP's should ensure the is an end of life plan in place too. That ensures that when that time comes everyone knows and understands what is needed in the was of support and management of issues, be that pain or something else. 

Good luck, I am sure you will do what is right for your dad.

John 

Hi John

On the internet I just came across details of a rare form of LB cell NH Lymphoma:-

intravascular LBC Lymphoma with symptoms of progressive dementia and little signs of circulating lymphoma cells in the blood.

I have no confidence in the specialists my father saw, where I recall the biopsy conclusion seemed slightly odd at the time and when I noted the coincidental cognitive issues they dismissed my thinking entirely.

i can return to my father’s GP but really I want him to have a second opinion from someone more specialist in what seems to be a rare condition.

any specific suggestions in South of England?

Rob

Hi these are 2 of the best to consult with Dr Chris Macnamara in London’s UCLH/Royal Free or Professor John Radford  at Manchester’s Christie, and they could review your fathers case just by receiving his files electronically and its worth having the biopsy reviewed as I said earlier (I think).

Some consultants are not as up to speed as others and that's understandable given the focus on treating patients, however no excuse for not listening to concerns and addressing them, mistakes do happen as some types are not easy to classify.

John