The last two months have been crazy. Ups and downs and downs and ups and sick and better and laid out flat in bed for weeks at a time.
… and then better. As it turns out, my oncologist and the nurse for my clinical trial weren’t bluffing. I’m not dying. Well, no faster than anyone else! I felt like I was dying, sure, but as it turns out, that’s in large part due to the massive dose of experimental drugs I was on, the neutropenia the meds induced, the highly elevated blood pressure, and the kidney infection that I battled without even knowing it for weeks.
Let’s talk about those drugs. Before a drug is approved for use in the treatment of cancer, it has to pass not just one but several phases of a clinical trial. When the scan found seven new tumors the first of January, I agreed to enter a Phase I/II clinical trial testing the combination of Nexavar and Femara in breast cancer patients. This combination has never been tried in humans before, and while there is great promise (due to Nexavar’s succesful use in liver and lung cancers, and Femara’s use in breast cancer patients), there is also no guarantee. It could stop my cancer from spreading, it could reduce the tumor burden, or it could do nothing. It could also have terrible side effects that make me feel like death.
So. Here we are. Two months out from the diagnosis of my fourth cancer. 90 days after starting the clinical trial (during which I’ve probably only been taking the meds half the time, as the other half I was told to stop taking them and let my body recover, not once but three times). One month from the PET scan that will tell us whether this drug combo is working to keep the cancer at bay. Back on the meds, at half the original dose, and pushing myself further each day. Yesterday I was able to go out for coffee with friends in the morning, pick my kids up from school, and go to the chiropractor for treatment of the pain in my back, neck, and hip, in hopes that some of it is not caused soley by the meds, but maybe just by the general weakness that chemo left behind as a parting gift.
It worked. I felt better.
And I walked hand-in-hand with my children down the streets of downtown Silver Spring, stopping in to introduce them to the movie theater (verdict: scary!), and then we did something that just two weeks ago I thought I’d never have the chance to do with my children.
We went ice skating.
Double runners, hand-in-hand, very, very slowly around the ice rink. It was magical. If you get the chance to try the new skating rink in downtown Silver Spring before it closes for the season (March 13), do it. It. was. awesome.
And although I still napped all morning and went to bed at 6 p.m., I did so with a smile on my face.
I have hope.
Added for clarification, 3/4/11:
Phase I clinical trials are designed to address the question: Is the treatment safe? These trials are the first time that the drug or drug combination have been tested in humans. Phase II clinical trials are designed to address the question: Does the treatment work? A combined Phase I/II trial like the one I’m in is broad-reaching, determining both what level of the drug or drug combination is safe to give patients without severe side effects (hellooooooooo, extreme weakness, feet and hands peeling off, and compromised quality of life!) and whether the drug or drug combination actually slows or stops the growth of the cancer in question. So this is a high risk trial, in some sense, but it also holds out the promise of high reward – an increase in quality of life and/or an extension of quantity of life over the use of Femara alone. And that, for me, is worth the risk.
Yay! Ice skating!
Woooo! Let’s hear it for ice skating! AWESOME!
So glad you are doing better.
Yay! And those double blades are just incredible. I didn’t even know they existed until I took my kids ice skating about a month ago. Wow! Love them. Wish they came in my size, in fact.
Exactly! I didn’t fall in my four trips around the rink, but I sure wasn’t as swift as I was in college or grad school … way out of practice!
The rink is cute, though — they even keep stacked buckets handy for the newbie skaters to push around for stability!
Hooray! I’m sorry that the movie theater was scarry,however…
So happy for you and your family!
Well, it was loud and dark, and I can see how it would be intimidating. They’re just not ready. Maybe for the kids’ film festival this summer.
For some reason, THIS post made me cry.
Holding hands and skating. Beautiful.
Yeah!! And go you for ice skating…I’m not afraid of many things, but that is one thing I avoid at all costs (between being a clutz and uncoordinated, I’m trouble on ice!) :))
My favorite post this whole month in all the blogosphere, right here.
And I mean February, not, you know the three days of March thus far. 🙂
I’d be happy with either. 🙂
What wonderful news. As a research nurse myself, I’m hoping you’re over the “adverse event” hump. Thank you so much for participating in a clinical trial-what a wonderful gift to others.
This makes me so happy!
Ice skating is great. Double runners sound wonderful, fantastic, wish I’d heard of them or found them in Melbourne 😀 Stacked buckets would have been handy too!
So glad you are feeling better and sleeping better and smiling.
I think Hope is the best drug you could be on right now. You know aside from the other drugs prescribed by your doctor 😉
Woo-hoo! Ice skating and all! This is awesome. You are awesome.
Hope is a beautiful thing. So happy for you!
I’m so happy for you. I’ve just found your blog. You are inspiring. Keep it up and I will be hoping for you as well.
So so happy things are getting better!
May God bless and keep you. I started with breast cancer at age 39. I have dealt with it 3 separate times. Have been in remission for 5+ years. There is always hope.
I think the movie theater is scary too. I liked when we went to the baby movies after free Gymboree and the lights were dim and the sound was turned down.
So glad yesterday was a normal day!
Yay! Such good news!
cheers to many many more days like these, susan.
How wonderful. Hooray!
For patients, clinical trials offer hope…
Sharon Gonzalez, vascular lab technician at The Valley Hospital in Ridgewood, N.J., conducts a carotid ultrasound on Linda Pollack, who had a heart attack and was given an unnamed statin for a partially clogged artery through a trial. The drug worked, …
I’m gonna be smiling for days after reading this post, Susan!! Enjoy every moment because the time flies for all of us, cancer or not.
One gigantic “Yaaaay!” So happy to read this news and hope you’ll continue to enjoy such happy days.
Love it! I’m so happy for great days!
Me too. I have hope! Amen!
Hallelujah! Hope is GREAT! 😀 Rejoicing with you, and praying that the results in a month are wonderful. Thank you for being in the clinical trial. Hoping that the combo is very effective and that you enjoy the benefits for (a very long) life! Praying for God’s grace, peace and strength.
Susan, I couldn’t be happier for you and your family. Of course there is hope!! You are overflowing with life– it’s just so wonderful to hear that things have improved, so that you can start enjoying life once more.
You are always in my prayers.
Much love, as always, CGF xoxo
learning, as ever, from your journey. thank you for that.
loving the fact that you all went skating. holding all the hope in the world in my heart that this is the first of many, many times. 🙂
Good for you!! So nice to hear good news! Enjoy the special moments with those kids!
Cool. I’m glad you’re feeling better and hopeful.
Powerful drugs will do that sh*t! But they do good things too.
So glad they let you lower the dose.
I bet you still have more energy than I do… 🙂 Ice skating… whew!
I’m glad to hear things are looking up. Congratulations on going ice skating! You probably hate to hear this, but your actions are inspiring to others. Thinking of you!
Wishing you many more good days ahead.
Wonderful to hear of the “normal” things you can do in between all the not-so-great things. I have so much hope for you & think of you often!
Keeping my fingers crossed for a good PET scan.
Wonderful update, Susan. I’m so glad you got to go ice skating with your boys. And that you feel hopeful once again.
Hooray! I LOVE this happy post!!! Thanks for sharing Susan.
Oh, how FUN!! Good for you! The ice skating sounds magical….and out for coffee?? can’t beat that.
My 6yr.old little boy thinks the theater is too loud also. We just pop popcorn and have movie night at home, with blankets and pillows spread on the floor.
Fantastic news. I so appreciate you sharing your experience, Susan, and for taking the time to educate us all. I always leave your posts with a sense of awe.
I can never think of a comment that can stand up to any of your posts. How about… yay for you?
So this is the kind of clinical trial where you for sure get the real drug and not possibly a placebo? (I guess that should be obvious from the side effects).
Oh happy day!!! Hugs!!
Glad you had some fun with your special boys. Hope there are many more days like this to come.x