Dad's new diagnosis of stage 4 diffuse large b cell lymphoma

Hi again  and well done navigating to this group and putting up your post. I am sure that some of the group members will be along soon and I am sure that my friend johnr will pickup on your post.

First stay away from Dr Google, it’s the most out of date, unhelpful and negative place to be looking.

There are lots of good stories but you have to look in the correct places and one good way is talking with people who have walked the walk and when it comes to survival stats we are all a statistic of one and no two journeys can be compared.

I had to have a slightly different treatment then you dad so I Radiotherapy then 6 cycles of R-EPOCH that had me in hospital for 5 days/nights so 120hrs of chemo every 3 weeks and on the whole I did ok with my treatment... but I did have to go onto to have Stem Cell Transplants

These are some useful links for you to have a look at

Nausea, remember he must not to suffer in silence when it comes to nausea there are lots of tools available - but his team need to know how you are getting on.

Fatigue may well build up over time so he must take each day as it comes but at the same time keeping some activity going does actually help overcome some of the fatigue.

Avoiding Infections obviously is very important but we all understand this even more so during these challenging times.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

((hugs))

HI And welcome to the group, as Mike has said do steer clear of google as advised, I had dlvc in my abdomen and small intestine back in 2009 and was stage 4B and here I am to tell the story. Don't get hung up on starts, they are at least 5 years out of date, your dad is a stat of one and believe me when I say survival rates are much improved from when I was diagnosed and the were no stats for anyone surviving over 5 years. Now they talk about cure, so that's how big the steps have been, though the treatment is still the same. 

Rchop plus Methotrexate can be tough but it is doable and you will have to wait and see what side effects he has if any, the good news is the treatment starts working as soon as its given and he should notice a difference after the first treatment. Whilst I don't post here as often due to the site glitches I do look in so any questions just ask.

My final positive thought for this post is, someone has to be a good stat so why not your dad, make that the families mantra and I am sure it will help.

John 

Thank you John, 

I think we've all accepted it's going to be tough on dad, but that's such a positive way to look at this, trying to make dad the positive stat. 

Really grateful for all the helpful advice does make a huge difference! 

Pretty much my diagnosis in 2018.  I was fit slim.and healthy but late stage and riddled with tumours. Drink like a fish after chemo....you need to flush that poison out. Walk and excersise every day. Get out there!  The fitter you are the easier it will be. Smile every day! To hell with cancer it's a temporary illness! Do NOT be frightened.. be fascinated. 

Stop.all negative self talk...you are simply being treated for an illness and it WILL be Gone In a few weeks or months

Hi everyone,

india5, tthank you for starting this thread.  How is your father now?  I hope he is coping well with treatment.

And to Mike, John and Trooper, I have been following some of your posts recently as I try to gather information for my father.  My sisters and I have been trying to support him remotely as he and Mommy are in Manila, and us siblings spread across Australia and New Zealand.  You can imagine how tough it is for us, feeling helpless as Covid and our health conditions make it almost impossible to take the next flight there.  Couldn't even celebrate the America's cup!

My dad has recently been diagnosed with Stage 4 DLBCL, non-germinal (ABC) a week ago, and started R-CHOP last Wednesday.  He is 77 and was in very good health until November last year when he started feeling pains on his thighs.  Fractures, after two operations, they found out it was the cancer causing the pain.  Likelihood is that it has penetrated the bone.

I am extremely worried how he would handle the journey.  Reading through people's experience and frantically researching medical resources online, I am assured that he is getting the right treatment.  I also shared your advice regarding the water, gargling salt an baking soda, exercise and the will to finish treatment.  It is hard because he is going to be immobile throughout the journey due to his operations.

I also advised him to diarise and take one day at a time, and I requested the medical staff to give me printouts of the treatment protocol, as it might give him a sense of control in that he knows what is going on.   I had already purchased a beanie, anti sore bed mattress, and a tablet holder which I hope will give a bit of comfort.  I also advised my Mum to massage his fingernails with olive oil and tea tree oil, it might help or not, who knows.  

How else can I support him remotely?  I was thinking of introducing him to online gaming so I could play and distract him from nuances of cancer treament Is that a good idea?  Any suggestions of little things would be most appreciated.

Thanks so much and sending best wishes to all of you going through the same journey.

Jo

Hi Jo, it sounds like you have done lots already and put in place much of what we would advise, I have not got any ideas as to how else you can support him remotely and would suggest just try to keep things as normal as possible. 

See how treatment goes as rchop can cause fatigue especially as treatment progresses, so see how it goes and ask any questions you or the family have.

regards, John

Hi Jo, as John say, you are doing great, you may want to post/look in our Living with cancer outside the UK group as you may get some connections and ideas.

During my main treatment both our daughters were living 100s of miles away and could well have been on the other side of the world but the two best things they did were have regular FaceTime contact with them and our granddaughters and I received regular emails with pictures, notes from the girls and regular post with paintings from the girls - that made me happy, we both were happy.

Lets look for his treatment to do the job ((hugs))

Thanks so much for your replies, John and Mike.  Really appreciate it. 

Yes, it is a good idea to do a regular call.  I am quite notorious with staying out of touch due to distance and daily living.  I recall when he and my 6 year old sang videoke online a few months ago.  It is nice hearing from you how comforting to a grandparent is connecting to a grand child. I need to make more effort to do it for Dad.

Once again, thanks so much for your support.  I will try my best to keep posted of his journey over the next few months.

Best regards,

Jo   

Obviously during look down we have not been able to see 3 of our 4 granddaughters who live in Surrey (we are in Inverness) for 7 months now.

So we are in contact most days on FaceTime. We have dinner together ;) they do their school reading and words with us, we read them stories..... at the weekend they will put on shows..... we send them on scavenger hunts around the house, they have an app that turns them into cartoon characters on the phone when we talk... and we often do their bed time stories.

As grandparents this is so precious beyond belief

Hi Jo, 

Sorry I am glad you have managed to find my post, I couldn't even remember this all now, unfortunately my father passed away he went in for his first cycle of chemo and caught Covid in hospital. I really do hope your father pulls through and fights this disease. Sending positive vibes only. 

Take care