Find another way to breathe..

As many of you gather from Konrad's post, things havent been going so well lately. Thats not to say they have been all bad since my last post -- in fact, things took such a turn for the better, I was doing 'splendid' as my oncologist would say, beaming each time he saw me. 

And these comments were from everyone who witnessed my transformation. Up 10 kg from pre-drug weight, I gained the stregth to walk again, got the color back in my face, literally the drug became my lifeline. Besides visual impairment (some dizziness and blurry vision), side effects were pretty much negligible.. Of all who noticed, most touching to me of course was the critiques I would get from my #1 fan, Karolek, who was already praising me on how much faster I was (I was doing better and better at our daily race to reach the top of the stairs), and he would happily comment that I wasnt coughing anymore. These lovely comments from my precious preschooler, amongst his countless "I love you mama"s.. I cherish each moment we have all spent as a family, and I am so thankful for this time that Crizotinib has ultimately given me in the difficult path we walk.

Unfortunately, what we are still trying to swallow, is that about 6 weeks after starting the drug, around the 10th of March, the fevers returned. They are getting stronger and more frequent, much like before. It seemed like a flu virus that has been going around - cough and nasal congestion. But after a week of 40 C fevers, and Tylenol not working to control them, I'm back on prednisone (the steroid). To give an idea of progresssion of the fevers, when I started, I was taking once every 24 hours, now 7 days later, I need to take it every 12 hours.. Bone pain has returned as well and comes with the onset of fevers.

"The most likely explanation is, unfortunately, a relapse of the lymphoma".

CT scan showed no enlarged lymph nodes, which are usually present in diagnosing lymphoma. However, bone marrow biopsy done last Monday has come back positive for lymphoma cancer cells once more. Doctor believes that the cancer was gone in that timeframe when I was feeling good; but has since re-appeared. My bloodwork is still okay, but markers for cancer cells are again on the rise (as an example, LDH was 2500 when I was very sick in December, it went down to 190, now its around 780)..

Options:
1. Increase the dose of Crizotinib. We are waiting to hear back to see if Pfizer will approve this request. I am currently taking 250 mg twice daily. If the ALK has mutated, the drug will be ineffective no matter the dose. However, there is a dosage study out there that gives patients 2000 mg daily -- and some doctors speculate that lymphoma patients may need higher than this standard dose I am currently on.

2. SGN-35 Trial. We are driving down to Chicago on Tuesday March 29th for a consultation on this drug. It targets CD-30, an antigen present in my ALK + Anaplastic Large Cell Lymphoma (ALCL) cells. As far as I understand it, its targeted chemotherapy, the drug is a CD-30 antibody--drug conjugate. So the antibody binds to the antigen on the surface of the cancer cell guiding the drug to these cells specifically, rather than killing healthy cells, as in standard chemotherapy. They have had success in patients so far, have to do some reading before next Tuesday.

3. ?? I hope there are more options, for now, we explore these..

Big decisions lie ahead.

If anything can be gained from me sharing this hardship we are going through, its that this be a reminder to cherish each and every day. As easy as it is to take our life, our health for granted; without it, we can just pray that by the grace of God, we pull through another day.. Do what makes you happy today!! And love the ones around you with all your heart.

Paulina & family