Course Correction – New chemo meds on the way!

Well that pesky cancer is fighting back after our first month of such great results (dimmer spots on the PET and lower CA 19 Blood Marker). Unfortunately, while the results of my recent PET/CT tests were essentially consistent with last month’s, the CA 19 blood marker from the latest blood test showed a 30-40% increase in that blood marker (this blood marker is used an indicator but is not necessarily definitive as to what is going on)..

Here is what I love about our JH team. They met with us yesterday and said, “Here’s what we are seeing. We are changing. Let’s move on to Plan B.”

As Howard just said to me, “Carol. It’s like chess. Move/Countermove.” I can relate to that thought.

So here’s what it means: I am off the “Gemsar” chemo, so no more weekly Thursday chemo + no clinical drug. I am out of the clinical trial b/c the doctors said that with my physical condition and the increase in the markers and what they see in the CT scan it was obvious that my cancer is resistant to that drug combo.

They are moving me over to a different drug that has been very successful in both colon (not me) and pancreas (that’s me) cancers.

I am excited that the new drug is given only once every three weeks by IV at Hopkins and then I take some pills in addition. I don’t remember the names of the drugs….we have it all written down somewhere. This new regimen has some of the same side effects – fatigue, nausea (oh yay) and then some potential neuropathy (tingling) in the toes and fingers that they say they can control, I just have to keep them posted. They also mentioned the creepiest thing that I hope I never experience – apparently some patients have found that within 2-5 days after the infusion, if they touch something cold (like in the frig) or drink a cold drink, they get the FEELING that they can’t breathe. You CAN breathe, it just FEELS like you can’t breathe. So you can get a little panicky. (a little??!!) so, I figure I am going just avoid refrigerators and wear mittens for 5 days after each infusion and not take the risk. Ha ha! So if you see me with fuzzy mittens in August you will know why!

So, yesterday was a bit of a downer, but you know….God says, “My mercies are new every morning” – and I was amazed how I lived that assurance just this morning. I feel just fine! I am full of hope that this new combo will work and anxious to get on with it. In fact even when we were in the meeting with the JH doctors, and when Dr. Dan called later last night, I found that I keep saying, “This is just different, not defeated.” I really don’t feel distressed over this change.

I will praise your name, oh Lord, for it is good. Psalm 54. I know You are on my side! Whew…and I thank You for that!

Oh! And thanks Kris for the tip on the nausea. (I was worried that the nausea drugs were making me sick..) well, thanks to your advice about drinking Coke Classic (just like Frank’s dear friend and college room mate Mark!) I have not had nausea for at least 20 hours! Yay!! AND you will be pleased to know that I am learning to eat whenever I don’t have that nauseous feeling. Btw, any advice out there for weight gain my friends, please post it.

Other good news is that with the “every 3 weeks” of the new chemo, that means I will still have the week off before Christine and Erik’s wedding. I am so happy about that! It’s hard to believe that the special, special day is only 3 weeks away. I don’t go back in for chemo then until the Monday after the wedding. What a gift of timing that is!

Please pray that this is the “right one” ~ that the tumors will shrink, the cells will diminish and side effects are mimimal.
Pray for Frank - for his strength, yet transparent compassion. He is amazing.
And while I’m at it…would you please pray for our kids as they walk this journey:
For Christine and Erik’s wedding – for great weather, safe travels for all, for God's continued blessing in the details
For Chip so far away in San Diego at Miramar Air Station. He will be able to come home for the wedding! Yay! Then he deploys to the Middle East in late July.
For Andrew who just found out he will be working again this summer at Moose River Outpost, a wonderful Christian Camp up in Maine.

I was thinking another good thing about this ‘every 3 weeks chemo’ maybe if the fatigue isn’t so bad, we could make a car trip to Maine to see Andrew this summer!! More on that plan later ☺

So, that’s it for now. Although I’m feeling so good this weekend, I have a couple more blogs in me!! I want to send you all a photo of my CBS gals and of Wolf von Kumburg, so watch this space. Please do post a little something to the blog if you have a second. I treasure the little glimpses of knowing you’re out there. (what a baby I am!!) ☺

Love you bunches,

Carol

p.s. someone told me, if it won’t take, and if you don’t have a gmail account, then comment as “anonymous” and then sign your name, initials, whatever! xoxo