The last time I posted about loverman’s bloody awesome journey we were anxiously waiting for his molecular/DNA test results.
Yep! We/he had a “plan”! The plan was to heal from his surgeries, take his chemotherapy treatment (Imatinib/Gleevec), try to adjust to treatment, follow the doctors’ orders, get tested at the three month mark, find out that he is responding to treatment, return to work in a gradual fashion and get on with living. He really hoped he could handle going back to work and he was looking forward to it. He was determined to push through the terrible severe side effects of the chemo and we were on course with this plan, despite the bumps, twists and turns along the way. Even the doctors were on board with that plan.
Well…once again I am reminded that the best plan to have is to expect that things might not go according to plan.
Plan A came to a screeching halt on the evening of Monday, March 3, 2014 when the oncologist/haematologist called Kevin to deliver some bad news. The Molecular/DNA test results concluded that he is not responding to the treatment yet. He is still at “diagnostic levels”. So, in plain English… the chemotherapy is keeping his white blood cell count within normal range and that is the most important response at this stage, but the rest of his CBC counts are still abnormal to critical and the molecular tests are unchanged…which means that it’s not “treating” the leukemia. The doctor also made it clear that he could not return to work like he planned.
I was at a Zumba class shimmying and shaking like Shakira when Kevin got the call. Thankfully he was visiting his parents at the time so they were able to comfort him a little bit. When he picked me up from Zumba he was an emotional wreck. As much as I encouraged him to NOT be discouraged, it was hard to hold back my own fear and emotion. There is something about seeing a 6ft 4in man cry that brings me to my knees. It’s heartbreaking. At that moment “Don’t worry! Everything is going to be okay!” just didn’t cut it.
So the news was not what we hoped for, but as disappointing as it was we must remember that it could have been worse. We have to be grateful that it wasn’t worse. I told him that it’s probably going to take longer for him to respond because he’s BIGGER than most people and that is probably what the holdup is! 😉 He’s 6ft 4in and 282-292lbs!!! What does he expect?! Right?!
I also told him to give them his good blood for the test, but men don’t always listen to their women! 😉
My loverman will continue on the same chemotherapy treatment at the same dose until May and hopefully the next molecular/DNA tests will finally show a response. He has also been prescribed 900mg Ferrous Sulphate… also known as “FURIOUS Sulphate” because it certainly causes a lot of fury to the tummy! He already suffers from major stomach pain daily that is caused by the Imatinib/Gleevec. Now he has to “try” and stomach a heavy dose of Iron. However, if it works, he will avoid a blood transfusion. So fingers crossed!
The doctor has reassured us that some people take a little bit longer than others to start to respond to the treatment. He also said that we can expect that it will take at least another YEAR before Kevin reaches a Complete Molecular Response (as close to a remission a CML patient can achieve). If he doesn’t start to respond, other treatments will be considered, other WAYYYY more EXPENSIVE treatments! =( And if those treatments don’t work, then we can hopefully opt for a Bone Marrow/Stem Cell Transplant. Here’s hoping it doesn’t come to THAT!
Sometimes this leukemia cancer journey makes me feel like we are running in a ziathalon that we didn’t train for…But there are supporters waiting for us at every bump, twist, turn and steep uphill saying KEEP GOING!! Thank you for that!
I think we can! I think we can! I think we can! 😉
Thanks for stopping by and thanks for your support!