Hello. I am caring for my mum...lymphoma. ....came online because of a sense of the 'final struggle' too. Wanted to say wherever you are, I will be thinking of you...your declaration of love for your wife and child, and everlasting commitment to them both is profounfly beautiful and full of courage.

Hello emido,

Twice I've read your post and twice I've been moved to tears. In a few simple words you've managed to convey an all consuming love and respect for your wife. I only wish I had the words to adequately respond and convey my feelings of empathy.

Best Regards

Taff

So sorry to hear about your mum, I can only wish you all the best from the bottom of heart really... 

Thank you for message, when everything is so tough you should know your words are really appreciated. Sometimes I feel so exhausted, I feel afraid, but then again I know I have to be there for my daughter, I have to be there for my little family, and I will just do the best I can, always...

Dear Taff, 

Thank you for your kind message. Believe me, I had tears when writing those words as well. I have had tears everyday recently but somehow I need to find comfort in those moments we still have together as a family, and I will not give up on them who depend on me...

Hi Wendy, 

(I wrote a long reply but it seems to have got lost so I try again)

I am happy to be of any help that I can, and I can imagine what you are facing. Let me first give an update on our situation since my last post. 

Actually my wife passed away this spring... Last year, when I wrote my post she was taken into hospital to have chemotherapy. After 2 sessions a scan was done which showed the lesions in the brain had grown even more and so the doctor decided to stop the treatment. Then in June she was given whole brain radiation therapy (brain and eyes) and this actually gave quite good results as a scan done in September showed no sign of disease. So were were able to have some months together as a family. Then towards the end of January she started having problems with her balance and also complained about floaters in the eye. However at first the scan showed no 
disease but as her condition got worser by the day we had another scan which then confirmed lesions in the brain. As a last option our doctor applied to access the targeted therapy drug Ibrutinib which we were able to get hold of as compassionate use. So we started Ibrutinib 
at the end of March but unfortunately it did nothing to stop her condition to get worse so by the end of April it was decided to stop all treatments except for steroids. She was taken into our community hospice and then passed away 2 weeks later just days before her birthday. 

I had promised that I would be there right next to her until the very end and I was sitting beside her, holding her hand right to her very last breath... 

The last months were incredibly tough. She was finally no able to speak, get up or even move arms or legs really. She was just in bed all the time and even unable to hold up her head straight. She was given steroids to the very end which actually I would say helped a lot with the symptoms but a downside of it is that it makes you very hungry which was a problem because she was not able to swallow properly and towards the end the doctors were telling us not to give food or drinks to her... Obviously this was very tough, also the doctor told me that use of steroids for long time at high doses would tend to weaken the muscles, but overall I would say the steroids helped a lot, especially as they reduce pressure inside the brain. 

Regarding the treatment being palliative or curative; I think this is a bit tricky with cns lymphoma as strictly speaking no treatment is "curative" really. But what they probably mean by "curative" treatment is that there is good chance of remission for at least some years. I dont know if it is an option for you to have whole brain radiation which does give very rapid response. But in our case at that time my wife was still able to walk so it would probably be extremely difficult if your dad is in bed. 
There is Ibrutinib also which NHS nor private insurance cover (not for cns lymphoma) but we got it as compassionate use although it didnt do us anything at all, although apparently some people have had good response (but not durable). 

My wife was home most of the time, the last time she stayed in hospital was last year. But then again she was on her feet and quite good until last February. The last 2 weeks she was in the hospice as it was by then impossible to properly care for her at home unfortunately. Her condition was just deteriorating too rapidly and I think she was more comfortable at the hospice which in our case was an excellent place. 

This is an incredibly difficult disease and unfortunately the end was very difficult and very unfair I feel. So the best one can do really is to try making your loved one as comfortable as you possibly can. Hold his hand, and speak to him gently. I am sure he will be able to recognize your voice to the very end. Even though my wife couldnt communicate or move I know she reacted to my voice. And when her mother spoke to her, even though she couldnt reply one could see tears in her eyes... 

Do not hesitate to ask more, I am happy to help in anyway I can. 

I wish you and your dad all the strength and hope you will be able to spend your time as best as can be done under the circumstances.

First of all, I would just like to offer my deepest condolences to you and your family. I am so sorry for your loss. I can't begin to imagine how you feel. I hope that as the days pass, the pain eases my friend.

To give you some context, my dad was diagnosed with Primary CNS Lymphoma in the summer of '13 when he was 44 years old. He received high dose chemotherapy and after almost 12 weeks in hospital, he eventually came home. His mobility had deteriorated due to the location of the brain lymphoma as well as having a small stroke. Left sided weakness, chronic nerve pain, amongst other things had rendered him wheelchair confined for the most part. He used his delta frame to get around the house but with great difficulty, and so would often resort to his wheelchair. Fortunately he was in remission for the best part of 5 years, which we are very thankful for. 

Fast forward to 2018 and he was diagnosed with primary vitreoretinal lymphoma (CNS lymphoma in effect) and started a round of chemotherapy injections, six to be precise. However, he only completed three rounds and requested to stop because the pressure was too much for him. A scan in March of this year showed the PVL had spread to the other eye. No treatment was done per dads requests. 

Last month over a few nights dads mobility a lot worse, to the point where family members had to carry him on/off the toilet. We took him in and after a throat biopsy (he was complaining about painless difficulty swallowing) they found lymphoma on the right hand side. Six weeks after admission and countless scans, a second MRI was done. They decided to do this scan because he couldn't swallow food at this point and almost always choked when he tried to eat. Not to mention his speech became very slurred. The MRI scan showed a relapse in CNS lymphoma and doctors have basically said there is no treatment they can offer in the realms of treating it, and it's just a matter of time. Currently he is on steroids to help alleviate the symptoms, and as you mentioned, they have made him noticeably perkier. Regarding radiotherapy, as my dad is bed bound and weak in terms of mobility, the toxicity of it outweighs the benefit which is something they want to avoid. This rules out any chemotherapy and clinical triala too. Right now, dad is in the process of being discharged so he can go home where he is more "comfortable". Doctors have given him a matter of months. The steroids have enabled him to be able to swallow again thankfully but speech is still slurry. It hasn't given him any of his movement back, and he hasn't sat up unaided since admissions six weeks ago. 

I guess my question is, even though I know there is no definite answer, is how long does he really have? How long will the steroids work? What happens once they stop working? I don't want him to suffer. Even as I am asking this, I know you probably won't be able to answer as the circumstances are different for everyone...  

Thank you for your very detailed reply, I really do appreciate it. 

Best wishes

Honestly when you first wrote about your dad I imagined him being much older  (especially since PCNSL tends to affect older people). However I see that he is still young and I genuinely feel so sorry for what he and you all have to go through; trust me it breaks my heart. 

I completely understand your question. Honestly it is so hard to say I guess, as everyone will have a slightly different situation. From what you write it sounds like his condition has deteriorated quite fast? In our case, up to the end of January my wife seemed fine; well she was not normal anyway after the disease and had many problems but we had no reason to suspect relapse again at least.  The very first sign was slight balance problems, and then again the floaters in the eye. In February she was having increasing problems walking and I was sure she had relapsed, but the scan still  showed nothing.  Then in March she would be mostly in wheelchair when going out although she could move around at home even though she fell a lot. But then in April her condition got worse really quickly and she couldnt even sit on a wheelchair anymore. She then passed away mid May. Probably without treatment, or with steroids only, I would guess from my experience that maybe 2-3 months at most? Dexamethasone is really effective in the short term, and in our case we could see clear improvement very rapidly, usually in one day even. But the effect probably does not last  more than at most a few weeks really. It was the same when she was first hospitalized; steorids rapidly improved her condition but only for 2 weeks or so really.

What then happens is that most likely you will notice a deterioration day by day really. He will probably lose the ability to do things he could still do one by one. For my wife first was the walking by herself. So I started helping her in the house. Then she couldnt get dressed anymore, so I did that too for her. Then she lost her speech completely and it became incrasingly difficult to take her to the toilet even with our help. Swallowing became more difficult, then she couldnt even sit on the sofa chair anymore, or in the wheelchair. So one by one everything would shut down. We then had to keep her in a hospital style bed that we got at home. Then she had increasing difficulty keeping her head up even in bed. It was then very clear she couldnt swallow properly so she got a terrible chesty cough and was given antibiotics. At this stage palliative care was involved. Finally the beginning of May
she was taken into the hospice as I just couldnt care for her at home. The truth is that 
I was myself close to a breakdown, mentally and physically. Actually physically it was so tough
for me to lift her up, to move her to the toilet etc, or even change her clothes when she was lying down completely motionless.  I had terrible back pain. 

At the very end, the final day, from the morning she was breathing very heavily. You could really see the chest move up and down, and the breathing was loud. That day she didnt eat at all. Her feet and hands were very cold (she was also completely emaciated by this stage) yet her body was very hot. 
Actually she had high fever and was given painkillers and morphine too. I think it was really the heavy breathing that made me think that was the final day. Then gradually her breathing became slower, and slower.. Her eyes had been shut all the time, and she opened them towards the end slightly. I called her name, asked if she coudl see me but the eyes did not move at all. Then shortly after that 
her breathing ceased completely and she shut her eyes... 

I understand your fear about him suffering. That is the hardest part to bear. Palliative care is usually good on this point but of course there is so much they can do. You can only hope he will not suffer, I think it is hard to tell. My wife never complained about pain, but then again it was so hard to know how she really felt.

My wife was diagnosed in August 2016 but by then she was very sick already. Like your dad 
she spent months in the hospital being treated by chemo. She then also had a stem cell  transplant but the remission only lasted 7 months when in November 2017 she was diagnosed with a relapse in both eyes but nothing showed in the brain initially. She then went through the horrible treatment of methotrexate injections into both eyes for 3 months. This was by far the hardest treatment; she was in such extreme pain and her vision was almost reduced to nothing. Yet the lymphoma immediately appeared in the brain again, the same week as we finished the eye treatment, so I really feel it was unfair after all she had gone through. Compared to that the radiation to the brain and eyes was much much easier. 

I will think about you and your dad, and again I am here to answer any questions you have or if you just want to write your feelings...

Just like you previously, I too have just lost a detailed reply so I will try to remember everything I wrote. 

Thank you again for your detailed reponse. I haven't come across anyone who has experienced a CNS relapse yet so I really do appreciate every piece of information. 

Right now my dad is on steroids and he has started to swallow a lot better than before. He is allowed level 4 purees and occasionally he still chokes/coughs and needs a lot of help, but it is better than not being able to swallow at all, pre steroids. He has an NG tube which will come out once he is home. His speech is still quite slurry so it hard to understand what he is trying to say which makes him frustrated even though he doesn't express it, you can see it in his eyes. Sometimes we use the alphabet chart so he can spell it out but a lot of the time it's pointless as his spelling isn't great. His mobility hasn't improved since the steroids, he started them about 4 days ago so I don't know if it's just a matter of being patient. Don't get me wrong, I don't expect him to leap out of bed but it would be nice to see him move a little. Currently he is bedbound so pretty much no sense of independent- staff change him when he soils himself which is a lot, he needs help with feeding and they change his clothes. He also has a catheter. 7-8 weeks ago this wasn't the case, he could do these things by himself, with difficulty but still it was some independence. 

I didn't know they weaned patients off steroids, I always thought it was a case of giving them until they stopped having an effect? Once he is home, carers will come 4 times a day to freshen him up but for the most part of the day and the whole night, the responsibility will be shared between myself and 4 siblings. I am 26 year old single mum to 2 year old so it's been difficult  but I have managed it so far. I spend anywhere between 5-9 hours at the hospital when I can arrange childcare. I hope it will get easier when my dad is home. 

Floaters, blurred vision, lyphoma in eyes- this all sounds the same as my dad. He had a scan about 4 weeks ago at a different hospital but they said they couldn't see any sign of relapse. Whether it progressed or something was missed, I don't know. All I know is my dad is definitely at the end of his life. He turned 51 the day he was admitted and since then, it has gone downhill unfortunately, with new symptoms presenting themselves. He had been referred to pallative team and a hospice was offered as respite but my dad said he wants to go home. I completely understand this isn't for everyone and to be honest with you, I would probably go for a hospice if I didn't have a large support network in the way of family. 

Your wife sounded like a strong woman to go through all 6 of those injections, I have seen first hand my dad who struggled with them after 3, hence his request to stop. If you don't mind my asking how old was your wife? 

Thank you for keeping us in your thoughts, you and your daughter are most certainly in time x

What you write about your dad sounds so familiar to me as well, unfortunately I would have to say.
About his frustration at not being understood, yes it was exactly the same for us. I would try really hard to understand what she was tyring to say but it was just too hard as her speech was also so slurry, and then she would get really frustrated and I would feel so sorry and frustrated myself...

I am so sorry that you have to go through all this at such a young age, and with your littleone to care too. For us, when my wife first got really ill our daughter was only a bit older than 1 year. So it was extremely tough for me too. And since neither of us is originally from the UK we did not have any family here, although my mom came here for months to help me out. As my brother works in the US he could only come for really short time. So I think it is invaluable that you have your family here although the situation is of course extremely difficult. It is good that you have nurses coming over to change him etc because that is really hard. I remember once me and my mom were trying to get her dressed at her bed after we had helped her to the toilet, for a second as I was dressing her pyjamas I let go of her as she was sitting up and she just fell backwards and hit her head on the metal railing. I was so sorry, she just couldnt sit up even for a short time.

My wife was 38-39 when she got first sick, and she passed away 4 days short of her 42nd birthday. I am myself 39 now  and our daughter 4.5 years old. For me during this time I had to take care of our daughter and my wife and work full time which was extremely tough although my boss and office were extremely understanding so I could work regularly from home and also make all those hospital visits (how many I cannot even remember!) As my wife had cognitive difficulties and also problems with her speech I had to handle all the doctor appointments etc. Sitting all those hours at the hospital and waiting for doctors, blood results, scans etc, it is nothing I miss. But then again, close to our hospital there was a pub that we really liked and we would go to for lunch in between the waiting, and those moments I cherish infinitely. Those little moments when we could maybe share a cup of tea, they were priceless. 

I wonder if we had the exact same protocol for the eye treatment? Actually for us she had to have for the first month injections into both eyes twice a week, and then once a week for the next 2 months. So in total she had 16 injections into each eye... It was again the most terrible treatment I have seen. At the time we were hoping that we would kill whatever was in the eye and prevent it from appearing in the brain anytime soon but that did not happen...Also I just cannot believe that after all that chemo into the eye, plus the full course of radiation she had the floaters again in the eye towards the end. Even our doctor was somewhat surprised as he had said that he thought it would never appear in the eye again. I guess her lymphoma was extremely aggressive. 

For your dad, after 4 days I would have expected the steroids to show their effect. How many milligrams are you getting? In our case we were getting 8mg a day of dexamethasone. It was then dropped to 6mg a day and that went on until the very final day. Actually as my wife was getting the Ibrutinib the idea was that we would stop the steroids completely, however, when we tried that her behaviour changed dramatically and she would shout, scream and refuse to be helped and so we immediately increased the steroids and she became much better. But then after a week she was already quite worse again although she never had that episode of shouting and refusing to be moved. It sounds maybe to me that your dad is like my wife was around in April... But it may 
be misleading to make a comparison. 

For food if he likes ice cream maybe that would be good to give? My wife had plenty of ice cream at the hospice which was actually really good as it is easy to swallow and she loved it. It is funny how even then I would worry about her eating maybe too much as if that would make any difference... I guess it is the way how we are conditioned to these things...I thing I heard was that with patients like this, when talking to them one should get quite close to them and look them straight in the eye as they might not see you properly if one is standing on the periphery of their vision. But I dont know if that would apply in your situation. 

Once again I wish you all the strength. The daily situation will probably consume you a lot, but one has to keep in mind that one day it will be over (for better or worse...) and at least your loved one will not suffer anymore. My thought when it was all over was that at least she didnt have to be in that terrible situation anymore because it was so unworthy, so undignified... But of course I miss her enormously...