CCNU/ Lomustine

although he had no signs, we knew anout the growth. He had gamma knife in July but ihas now grown since the treatment and he now has two. Temodar stopped working so they gave him CCNU. When I read stories about it people say its a last resort chemo. He has no side effects other than being tired. Had they not told us about the reoccurrence, we wouldn't have known.

luvs2run said:

CCNU

I haven't heard it called a last resort.  Although Temodar has fewer side effects, I've also seen studies that show that it isn't as effective as PCV. I've heard PCV called the gold standard for oligodendrogliomas.  The "C" in PCV is CCNU.  Rather than start me on Temodar, my NO treated me with BCNU (carmustine) which is an older chemical cousin of CCNU. Like your husband, I tolerated it well.  the only side effect I experienced was low platelets about 3 weeks after treatment.  A platelet transfusion and a change in subsequent dosage corrected that.  Good luck!

Luvs2run,

Thank you so much for your reply. The doctor gave him a choice between two different chemo pills but we had no idea which one to go with. He recommended CCNU except he called it Lomustine. I did not know it was CCNU until the nurse talking to us about filling the prescription. He has a reoccurrence of his Anaplasitc Olio grade 3. I am so worried. Good luck to you as well.

God Bless!

I_Promise said:

I am very sorry about the reoccurence

I want your husband to do well. I will be sending him positive thoughts. What regimen is he on now? Any clinical trial?

xoxo

Julia

I_Promise,

He is taking CCNU and Dex for swelling. No clinical is offered for Anaplastic Oliodendroglioma I was told. He seems to be tolerating it well so far. Thank you for your kind words! It's very frightening to know its back!