High grade DLBCL of Immunoblastic Type

Hi and welcome to the club that know one wants to be in but you have found a safe supportive place and I am so sorry to hear about your brother. 

This period of investigation is hard as it does take time to get all the information together. But very clear information is so important as this helps his team use the very best treatment available.

I have lived and been treated for my T-Cell Lymphoma for over 20 year and I am still around and doing great so be encouraged.

After 14 years I eventually developed a brick sized growth on my neck but I have to say that the chemo I had did an amazing job getting me into a position to get the rest of the treatment that I had to have.

Blood cancers are very treatable with great success, yes some of the treatment can be hard work but do-able.

Make sure he gets clear information with regards to what treatment he will be having and come back to us as we can help you all walk this road.

((hugs))

Thanks so much Mike. Your story is truly inspiring. 

Hi and welcome to the site, I was diagnosed in 2009 when the were only 2 types of classification for dlbc, that has changed and the are an additional 4 subsets and the type your brother may have was recognised around 2015. At this stage all the tests need to be undertaken to establish the full picture and that leads to the treatment plan. This part is the hardest as he is not in control and just has to wait and in his case getting the subtype right is critical to ensure the right treatment and best chance of remission. When he knows more we can offer advice and share our experiences and we will try to answer any question you or he may have now.

Once the plan is in place things will move swiftly and know that blood cancers are not like solid tumour cancer so a stage 4 which I was is not the end of the world. 4.2cm is not large for dlbc masses so that's a good sign, but a step at a time and things will fall in to place.

here to help

John 

Hi again, a blood cancer journey can be a touch of a mystery and that is why I like the Mandela quote It always seems impossible until its done

As long as you all keep your eye on the end goal, the greater good in all this, it is amazing what the body can go through to cross that finishing line.

We are always around to help x

Hi John,

Your message softened my heart. I have been in agony sine his first consultation and have been crying non stop since he called me this morning to tell me the bad news. People like you are making the world a better place. THANK YOU

THANK YOU!!! 

some additional advice to you both is whilst its tempting steer clear of research until the final diagnosis is given and at that point I can direct you the good sites.

and your welcome many of us have been in that position and in my case `I was the one who had to make the calls and give the news to family not easy, click on my name if you want to know more about the last 10 years

John 

Unfortunately we had very sad news. Last Monday we received the final diagnosis. It was worse than originally anticipated. The DLBCL subtype is Plasmablastic lymphoma. CD20 negative. The PET scan showed enlarged abdominal lymph nodes in the abdominal area *same as CT scan without any extranodal sites and without any other areas affected. Bone marrow biopsy is expected on Monday. Due to the very rare and agressive type, he started chemo already since yesterday 24/7 x 4 days (V-EPOCH). I have looked everywhere to find others fighting the same desease but with no luck. PBL is an extremely rare lymphoma with very poor prognosis. My only glimpse of hope is a relatively recent article by Jorge J. Castillo https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.15156?fbclid=IwAR3whfx4vred_Ve_8IwH0eIqFTKY3T4QFMxxIeqp-S6VvJpySXfBRKHsWTs&

Any information or advice I would really appreciate. 

Thank you

Hi, this sub type is rare and whilst the are a few reviews or papers on treatment it has proven to be challenging to treat, though the are some successes and it is still early days to see what the medium to long term outcomes may be.

The best advice is to ensure his case has been considered by the top haematologists in the country and his team are talking to others to ensure this is the best option. As it is rare the likelihood of finding other is will be slim unfortunately.

Good morning , over my long year living and being treated for another rare type of NHL I totally understand the challenges around the lack of information. But I am now coming up to 6 years since I started my R-EPOCH....... so rather similar to your brother.

I had 6 cycles with each cycle being 5 days/nights on the chemo regime - so 120 hrs+ at a time. At the start my team said that my condition of 14 years had become very aggressive so had to be treated aggressively...... but that did not mean one big hit. It was all about a controlled treatment that slowly reduced the growth areas. My growth was on the left of my neck. 

It looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted.

I had an initial 15min blast of Vincristine and the initial results were amazing. We could actually see and feel the growth getting soft  

This was a surprise for my team as it is not often you would see a 'mass' reducing in size as most are in the body. My team were so pleased as to the difference that first blast made they sent me home over Christmas for 9 days. I actually had some Christmas dinner - unbelievable. Then went back in to start my first cycle.

As John says, there are not a lot of information available, but as long as his team are at the top of their game or with me, my team put my case out for review by other experts around the UK and indeed abroad...... then you go into this expecting good results.

I honestly had no real issues, never once felt sick, yes my hair was like snow on a warm day. Was eating well but I did develop Helicobacter Pylori, a bacteria that developed ulcers and stomach inflammation so that spoiled the part a touch but we got that fixed with some antibiotics.

The two very important things he does need to do is:

Drink lots of water....... I mean 3-4 Litres a day as this helps flush all the toxins out from his system and protects his kidneys - this is hard work but so worth it.

He must keep active - I would take my two chemo pumps and trolly and walk round the little words corridors. I would do this after every meal time, I worked our by counting the number of tiles on the floor and the size that I was doing about 2 miles a day....... this overcome a lot of the Fatigue the longer he stays in bed the longer his recovery will be.

On my first cycle a good friend came into see me - she was a pharmacist in the hospital and just a few hours before she had been mixing up my R-EPOCH. she said have faith in what "The Educated Bleach" can do!!!! She also gave me a tub of fresh cut Pineapple and Melon and this was so good for helping the "sucking an old coin" taste the chemo can bring.

Keep posting and keep looking at the greater good in all this.

((hugs))