Grey Zone Lymphoma, Double-hit Lymphoma, Triple -hit Lymphomas (not otherwise specified)

Hi, I posted this about double hit a couple of weeks ago

https://community.macmillan.org.uk/cancer_types/mediastinal_diffuse_large_b-cell_lymphoma/f/mediastinal_diffuse_large_b-cell_lymphoma-forum/199277/double-hit-dlbc-research-re-treatment-options-and-outcomes

however if he has had his lifetime limit of rituximab then it won't be relevant unfortunately, have they said if one of the newer second generation drugs may be possible?

Give his unique situation is he being seen at one of the top hospitals or are they consulting with others both in this country and abroad.

The have been a small handful of people who have had non specific on this site and an other and I do remember a couple having transplants and at least one who had double hit had successful treatment. The was also an article in the lymphoma action mag some years back where a double hit patient shared her story.

you may want to post in the transplant group too and see what responses you get

John 

Hi again so now you know what you are dealing with and as with all rare types of NHL, finding others who have been on the same treatment journey can be challenging but John has given you some good information.

My rare type of NHL eventually became stubborn and then aggressive so I went on to have two Donor (Allo) Stem Cell Transplants (SCT) with cells from my brother.

It is a long story so hit my community name Thehighlander to have a look.

Is a Allo SCT the next route his team are looking at?

As John says, we do have our dedicated Stem Cell Transplant Group and see you have joined it so if that is the route he goes on do post in the group as we can help navigate this with you.

My case was put out far and wide to get the opinions of other experts in my type of NHL and with this a plan was put together.

It would help to put some information in your profile as it helps to give some context Click here to see how to add details to your profile. 

Always around to help you on this journey 

Hi John,

Thank you for your reply. It’s good to know there are others and he’s not on his own!

Have a look at my profile it gives a bit of insight to our story/history.

Iv had a look at your link from the 17th it is interesting how RCHOP doesn’t seem as successful? But it doesn’t seem relevant in comparison to my husband other chemotherapy RESHAP and BEAM? But even so it was an interesting read!

We are going to find out more tomorrow after the MDT. 

Thanks again Diamond Girl 

Hi Mike,

Just want to say thanks for responding to my posts!

I have seen your name on here a lot over the last few years, you seem very knowledgeable and full of reassurance to me and lots of others so thank you.

I updated my profile with a long but brief history of the last 3 years. Which might give you a bit of insight to what we have been through. 

we will find out more tomorrow after the MDT and find out exactly what chemo awaits next week. 

Thanks Diamond Girl 

Good morning thank you for getting your profile done, this does help a lot and gives some context.

It is interesting that you say that you try to understand everything the consultant says but things changes so much and often. This is the nature of blood cancer and I always say Expect the Unexpected.

We have a few note books full of information given over our main years on this journey. You notice I say we, I will always say that this is a team effort and see my wife to be on this journey as well. Actually, I think the person looking on has a harder time than the person in the bed.

The main challenge is controlling the whirlwind that can live between our ears but we always found once we had a plan we could move on ‘again’

Lets look for his/your team to find the best way forward ((hugs))