Worried about prognosis for spread (Stage 4) DLBCL

Hi Annie  and welcome to this corner of the Community.

Although I had a different type of NHL and treatment, my skin Lymphoma was also stage 4 and was everywhere in and on my body.

R-CHOP is very effective and yes, will go to all the areas that are affected. Think where your blood goes the chemo will go and that includes all the growth areas.

Fatigue will accumulate over your cycles - the best way I found to overcome a good portion of the fatigue was little and often activity - yes it sounds so counterintuitive but it does work, so set little achievable targets across the day but when your body says chill - then do it.

Stairs for me was like running a marathon so I had to climb them on my hands and knees with some great encouragement from the granddaughters - this will pass.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

((hugs))

Thanks. That's reassuring to know that you had chemo success with a stage 4 Lymphoma, and to hear that you equally found stairs horrendous. Here's hoping it will calm down a bit as I head into wk 3. 

I have updated my profile. I hope it's sorted and you can see the info now? 

Thanks again,

Hi Annie,

My other half had stage 4 DLBCL 7 years ago this month. His was in his mouth, both sides of his neck and on one of his kidneys. He is now just over 6 years in full remission so it is possible to have successful treatment. He's been left with some side effects, mainly cognitive, but we're so very lucky.

He also struggled with fatigue. From what his specialists have said this is because lymphomas such as this have to be hit hard with chemo. The people who can carry on working through it are not usually having the same combination or dosage as you. When it comes to dealing with it, just ride it as best you can. Listen to your body. When you start to sweat, feel shaky or wobbly stop and rest. You won't feel like this all the time, enjoy the days/hours when you feel better and be kind to yourself when you don't. He also found keeping up the protein and iron in his diet really useful, he was a vegetarian when diagnosed by reintroduced meat after weirdly craving it for weeks during treatment.

I also now struggle with fatigue due to a different condition and I've found that's also the best advice I can give from my point of view as well. Sleep if you need to, find small, low energy hobbies and comforting/interesting things to watch or listen to when you're not up to much but also don't want to sleep.

I hope the rest of the treatment goes well for you, it's a bumpy ride so enjoy the bits you can and be kind to yourself.

I had the same stage 4 DLBC plus also follicular lymphoma and it was everywhere. One lung was blocked and had collapsed, the other had bits in. It was also in the bit between the lungs . It was also in the pericardium, that is the sac around the heart. It was in the bone marrow, it was in the groin, in the arm.. you get the picture. The RCHOP chemo got rid of all except maybe a tiny bit left in between the lungs and they aren't even sure if there was any there but zapped it with radiotherapy anyway. The final scan said all clear. 

So yes, the chemo can get rid of all of it, it just melts away. Be kind to yourself and do what you need to to get through it. I know I felt tired and I ached in places all over at times but there were days and weeks when I felt much better. It was all worth it. Good luck.

Thank you SO much, its so good to finally hear some success stories from people whose Lymphoma isn't just in 1 or 2 places. Mine is in my rectum, urethra, groin, round my liver and spleen, in my lungs and probably in one breast. You guys have given me hope when I was starting to sink into a bit of despair. I really hope I'm as lucky.  

Good morning Annie , some great information from all the folks - there is nothing better than talking with people who have walked the walk.

A very high percentage of NHLs are effectively treated with folks going on to long term remission living long and happy lives so keep this in your mind, control the 'battle between your ears' and let your team do the rest.

Back in1999 when I was diagnosed I was clearly told that I would never be in remission from my rare type of NHL and indeed - some day in the future it would get me........ fast forward to 19 September 2016 I was told that I was in Remission and NED (No Evident Disease) for the first time in over 17 years...... you get my smile.

Yes the treatments I had to have were long and strong but I have no regrets and now look back at the journey and basically see all the memories with fuzzy edges and if it was not for the fact that I help out on the Community - the memories may well have become more fuzzy.

Not one R-CHOP journey will be the same and some folks just sail through and other have a had time but its all about where the presentation is and how hard it needs to be treated.

To add to the great advice - do ensure that you are bringing lots of water, say 2-3Lt a day as this will flush all the toxins from your body and protect your kidneys.

Avoiding Infections at this time of the year will be that touch harder but some basic common-sense precautions normal does the trick.

You are doing great and keep focusing on the greater good in all this ((hugs))

Hello. 

I was diagnosed with Stage 4 DLBCL in October last year. It had involved the liver, spleen and lungs as well as the usual spots, with a huge (and I mean really huge) mass in my abdomen as well. 

I have had 6 R-CHOP and one Rituximab treatment and all the original stuff appears to be gone, though some things did light up on my last PET scan. 

Two of the spots have turned out to be nothing, the third, I'm due to have a biopsy for, but as I said, the R-CHOP hit all the original stuff. 

In terms of week two, I found that to be the worst time was well, I think because it's when you come off the Prednisolone. The steroids mask the pain and side effects. I found that I was weaker and dizzier during week two. One of the things I did was join the gym program at the hospital. It's great for two reasons -- first to keep your strength up and alleviate side effects and second to put you into contact with others who, while they may not have lymphoma, are also going through the motions in this cancer journey. I have two friends I've made from my group. One has breast cancer, the other has liver cancer and we check in on each other and are a support system when so many people we know have no understanding of cancer or chemo. 

Thanks so much for this. Its always really reassuring to hear of success stories with similar starting points to me. I hadn't heard of the hospital gym, will look into it, though I suspect my exercise levels will be v low! Tried to go for a walk today and got 2 mins in before I had to sit on the floor and abort mission. My cycles seem to vary a lot in terms of how I feel, though I'm guessing this is normal. Chemo cycle 4 of 6 starting on Tuesday so I'm getting there!! 

Good luck with your journey. Fingers crossed for FP on the PET scan xx

I just has cycle 4 of cycle 6 so we can be cycle buddies.  Cycle 3 was my absolute worst with me managing to get a heap of complications requiring cycle 4 to be delayed.  I seem to be back on track now, though.

Hi, just read your story. I too have DLBCL stage 4 scattered around abdomen, liver spleen, lungs & neck diagnosed last July. Received 8 RCHOP sessions over 5 months. Last PET scan showed no signs of enlarged lymph nodes so now in remission. I too felt there was no hope of full recovery with stage 4 but here I am, still alive & kicking, just! It does knock the living life force out of you & recovery is painfully slow, can take a year to 18 months, but taking one day at a time is the only way to achieve tiny goals and just give in to the days when you feel absolutely crap.