DLBCL and Familial Thrombocytopenia

Relapsed or refractory lymphoma
#1

I wonder if anyone has had any experience, or has any knowledge of Thrombocytopenia, often abbreviated to ITP, aborting R-Chop chemo.

It is common knowledge that many chemotherapy regimens can lower the platelet level such that the chemo cycles have to be delayed until the platelets rise back up to their normal state. However, there are very rare occasions where someone like me who has familial thrombocytopenia where chemo therapy just can’t be administered.

I have twice been given the poietin agonist drug Eltrombopag as a last resort ITP third line attempt to increase my platelets for surgery. The last time being for the surgery to remove the mass from my neck which diagnosed DLBCL. This not only raised my platelets for the operation but kept them above the required level for the first two R-Chop cycles. But, they then dropped back to my median level which is between 36 and 56 x 10 to the 9th/L

My consultant after a few weeks rest started me again on the drug in an attempt to get my platelets back up so as to be able to continue the chemo. Unfortunately, it would appear that I have become resistant to this drug and therefore with no where else to go the ITP is preventing any further chemo treatment.

I wonder if anyone has the knowledge of any second line treatment for DLBCL which is not dependant on high platelet levels or is compatible with ITP?

#2

Hi, and sorry to read you are having a problem with treatment, I am afraid `I cannot offer any direct advice, but would suggest 2 things.
First ring the helpline here at lymphoma action speak to one of the specialist nurses and see if they have any advice.
The second is seek a second opinion from one of the top hospitals like the Christie at Manchester as they will also have knowledge of any new trial drugs that may be available, as sometimes even though a trial may not be running they can still access them on compassionate grounds by going direct to the drug company.

Hope you receive some help and advice that results in an option or two, as some monoclonal antibody drugs may just be an option.

John

#3

read this and it suggest lower down the page rituximab with dexamethasone is a possible treatment, 2 of the drugs used in rchop ? any help

#4

Thanks Johnr,

Unfortunately, my thrombocytopenia is familial, hereditary, and does not respond in the same way as all the other forms of thrombocytopenia.

Dexamethasone is a corticosteroid and is one of the first line treatments for ITP and in my case was not responsive. As for the monoclonal drug rituximab, I have had this as part of the two chemo cycles, which combined with the corticosteroid actually reduced my platelet level, but thanks for the suggestion.

As for trials, there are several trials for DLBCL and also several trials for ITP, worldwide. Unfortunately, there are no, or never have been any, combined trials for DLBCL effected by familial thrombocytopenia.

According to several ITP organisations, there is a common assumption that many variations of thrombocytopenia have the ability to change inefficacy when it comes into contact with threatening drugs or in its opinion threatening situations.