Clean check ups and ponatinib

Sue has had two clean check ups, including an MRI on Friday that was good. Sue seems to mainly be recovering from the radiation and chemo treatments earlier, but still having pain associated with her hips. And she is still getting the regular immunotherapy treatments.

We also traveled up to Philadelphia to see Sue's Proton Beam radiation oncologist for a followup appointment. That went well with the aftereffects seeming within normal range. Then we met up with friends and family in the Philly and Princeton area. Some of our friends traveled down and we had a great cookout with them. 

And Sue also had a long weekend on Captiva Island, FL with girlfriends who are also celebrating their 50th year. I hear she enjoyed her stay on the beach. She brought me back a t-shirt ... woohoo.

And we are looking forward to a good July fourth weekend cook out and time with friends. We hope you all have a good time too (and Happy Canada Day for our northern family)!

While doing research on other possible treatments, I found an article about two cases where leukemia patients who were taking ponatinib (aka Iclusig) had their supplies interrupted by the FDA withdrawal of the drug for a couple months. Fortunately, Sue's doctor was able to keep Sue on the drug during that period. However, the two patients that went without the drug developed brain tumors and only recovered when they went back on the drug as well as other regular chemo. Sue's recurrence happened when she had to go off the drug for a month due to a drug interaction. It seems like the ponatinib/Iclusig may be an important part of treating CNS recurrences for Philly positive leukemia or perhaps keeping it from happening in the first place. Other related drugs do not seem to work at all for CNS involvement. I am hoping that researchers can take these anecdotal cases, Sue's and other patients' and see if this information may help others.

Comments

[Ruth Skjerseth]

Wow, wonderful news! Love and (still) prayers, always, Ruth

[tenbsmith]

Great news! And, thanks as always for the update.