New Dx -- Reaching Out For Support

po18guy

Well, we do live in the current moment and nit one before or one after. If we obssess over the future and prognosis and outcome, etc. etc. etc. we lose the only thing we possess: today. Just know that the standard of therapy is constantly changing, research is on-going and those high prices drive the research. Ibrutinib is next on my list if Ruxolitinib ($14,400/month) fails. That would be my 22nd drug. But so far so good.

Think of it this way: every day of the year, 103 women, men and children - in American alone - die unexpectedly. Traffic collisions. No warning. No goodbyes. No patched up relationships. Just lights out. Be careful driving to doctor's appointments! And keep studying, knowing that you live in the period of humn history which holds the greatest hope for triumphing over this disease. Even your parents would have had no such hope.

alphasimian

So it looks like Ibrutinib is for more aggressive CLL. It may be used temporarily at the beginning before switching to another therapy.

I keep forgetting that there isn’t just one CLL. I have literally the best prognosis for it — I only have 13q14 deletions (13q14.2 and oddly 13q34??). So the hyper-aggressive refractory CLL therapies are an unlikely first choice.

po18guy

There is a chance that using a therapy which targets the most aggressive (although most easily killed) cells, will leave behind those indolent cells which are most difficult to stop. A win-lose, so to speak.

alphasimian

Yeah. My understanding is that there’s basically no way to kill all the indolent cells short of horrifically unpleasant things like a full bone marrow transplant. My cancer is SO slow growing and the risk factors are so low (in terms of my prognosis) that I could probably live most of the rest of my normal lifespan with no treatment for my CLL. I mean I had visibly enlarged lymph nodes at the end of 2019, and the only change after more than three years without treatment is… bigger lymph nodes.

I’m not making light of my cancer. I’m just reminding myself that there really is no one size fits all treatment for cancer, and I need to wait to see the recommendation before freaking out too much.

alphasimian

If it helps, afaik my ONLY mutation is a 13q14.2/13q34. Apparently that’s a good prognostic indicator if a long arm of 13 deletion is the ONLY mutation, everything else is negative (or positive in the case of Igvh somatic hyper mutation).

alphasimian

Yeah my second oncologist appointment lead to a “no treatment necessary right now” verdict. No Imbruvica, no nothing. Just watch for eg enlarging lymph nodes, night sweats, etc. (indicating it might have accelerated) and “lead a healthy life.”

po18guy

A strange thing about indolent cancers: treat them too early or too aggressively and they may be provoked into more aggressive behavior. It has been known to lead them into transformation into aggressive sub-types. So, we LIVE with the cancer, but all the time knowing that research is on-going, even while we sleep, directed toward arriving at more effective treatments.

po18guy

https://csn.cancer.org/discussion/comment/1706072#Comment_1706072

Well, this is something that we acclimate to, believe it or not. We are adaptable creatures and I am very thankful for that. I underwent a stem-cell transplant in 2015, at which point I had developed with three simultaneous blood/marrow cancers. i consider it the "cost of living." Picked up a fourth (squamous cell carcinoma) since then, but it now seems to be gone. We adapt. We move on.

cbears

https://csn.cancer.org/discussion/comment/1705638#Comment_1705638

New to the discussion board and just wanted to say how appreciative I am of your thoughtful comment. My husband has just been diagnosed with his own version of lymphoma and we are just at the beginning. Your wise words are helpful as we join you all on the journey no one asks for…thank you for allowing me to follow. —Cindy

po18guy

https://csn.cancer.org/discussion/comment/1709163#Comment_1709163

You are very kind. I am passing on what I have learned, and that which was handed on to me by other patients.