With my 60mg dose of Cabometyx this Wednesday, I’ll have been on the drug for three weeks. Here’s what I can report: I’ve lost just over 40 pounds (about 14 since starting the drug). I have retained 75% of my ability to taste, but have real issues with a tender mouth. It feels like there is full-time effervescence on my tongue, much like the sizzle on the front of your tongue when you take a sip of cold Coca Cola right out of a frosty bottle, but without the awesome, sweet, caramel flavor.
Flavors like Coca Cola and my great coffee morph quickly toward effervescent and metallic, so some simple pleasures like a cold Coke or a great cup of coffee are wasted on the new me. I am sensitive in my mouth to cold and hot extremes, too. Meat is completely off the table. I was particularly saddened to have to turn down a juicy slice of John Strawbridge’s Easter brisket. It looked so damned good, but I knew it would set me up for a sick feeling for the rest of the day, so I declined.
When I took Votrient for 15 months, I threw up almost every day during that period. I was sick when I awoke each day and the nausea was aggressive. The nausea from Cabometyx is different. It is more pervasive, but doesn’t generally end with vomiting. It just hangs over you during the awake part of your day. So, eating is still an issue. I really don’t know if I’ll be able to eat something until I start to put it in my mouth. Sweet potatoes seem to always be a winner, so I keep them on hand.
Now for what I hope is the good stuff: The deep bone pain I have experienced since just before we found out I had a new bone met in my spine, is gone. I’m not having to take any pain medication, not even Tylenol, and I get the distinct feeling from my body that something good is going on.
Buoyed by optimism from the realization that less pain certainly should mean less tumor, I’m getting plans in place to get out to Dallas for a consultation with the neurosurgery/radiation team. I’m hopeful that scans in 5-6 weeks will show we’re getting good tumor reduction and that shrinkage will make a spine surgery and radiation treatment just what I need to restabilize my spine and put this disease process back on its heals.
We continue to be grateful for evidence that the prayers of many are working to heal my body and we continue to appreciate the kindnesses shown to my entire family during this next round of living with cancer.
I know I appear to have abandoned many of my brothers and sisters who are in full-fledged battle with this godawful disease. I’m still here, still channeling the prayers I’m receiving right onto you. Still mentioning your names in my daily prayers. Still doing what I can to help you understand that what goes on between your ears is the most important ingredient for a NED (No Evidence of Disease) statement from your medical team.
We have a solid plan coming together and with that plan comes strength.
Cindi Ludwig says
Wow! Great way to start the week! Your treatment although not without side effects sounds promising on many fronts. I am thrilled for you that it seems to being going your way. Thank you for being so faithful in keeping us up to date.
Angie Bacon says
So happy to hear there is some good news.
You and Jill are being lifted in prayer. Thank you for updating us.
Gayla Ahlquist says
Continued prayers’ Mike.
Guy Sims says
I am sorry about the side effects but thankful the spinal pain is gone. I continue to pray for you and for Jill.
Virginia says
Neal and I are continuing prayers for healing and strength for you and Jill.
Thanks for the encouraging update.
We love you
Cindy & Neal
Tom and Sam Gates says
We are grateful for your posts and that the medication is having a positive effect. I pray the side effects will stay within acceptable limits and that the treatment will lead to Houston in the next few weeks. You are in our prayers daily. God bless your stamina and persistence.
Tom and Sam
Michael Silverstein says
Your courage and resilience is inspiring. Keep fighting the good fight. G-d Bless you, Jill and your entire family!
Love,
Susan & Michael
Jodi Palmer says
Sending prayers, blessings and much, much love, Mike.
Jodi and James Palmer
Eleanor Burnham says
Prayers for you and Jill. Eleanor
Ann Blondheim says
This is such encouraging news! Glad to hear of the reduction in pain. You are on my prayer list as well as those at St. James’ Church in Eufaula. Love….
Rob St. Clair says
Mike, I’m encouraged by your latest news, hoping that maybe you’re turning the corner and finally seeing positive results from your treatment. You and Jill are constantly in my thoughts and prayers, and, on behalf of so many others who are following your journey, wish you the very best.
Mary Margaret stone says
Dick and I are lifting you and Jill in our prayers.
Chuck Cumiskey says
All the best, Mike. Look forward to seeing the skinny-ass you real soon.
Stephen Coates says
Glad to hear some good news! Hang in there. We’re thinking and praying about you.
Callie says
Alleluia, alleluia, ALLELUIA!!!! (Yes, I shouted in all caps with an excess of punctuation, but the post warranted it.) What a perfect beginning to the Easter season. May it be filled with hope, joy, comfort, and especially health for you and for all others fighting the good fight. All my love to you and Jill!
Bill Henry says
Thank you for the update! You handle this with determination and transparency that is so meaningful to the many that you touch. Sandra and I continue to keep you in our thoughts and prayers. God bless you! Miss seeing you, Mike!
Jo McDaniel says
Mike and Jill,
I am amazed at your courage, your optimism and hope. I know all of that has a direct effect on your healing. The rest of us will do our part with encouragement, love and prayer. If there is more for us to do, ask! We are with you in spirit. God bless you.
Carole Rutland says
Mike,you are so inspirational and I feel so fortunate to have you and Jill as friends. We are praying for you and ready to be there for you anytime you need us!
Love
Carole and Bob
Mike Owen says
You are the toughest SOB I’ve ever known, and I am so proud to say you are my friend.
Margie Ivey says
So glad the pain is better. Continued thoughts and prayers are with you.
Kim Farmer says
Thanks for the update. Continued prayers for you, Jill and the rest of your family.
Carol Ann Kaplan says
Hallelujah, Mike! So happy to hear that you are not in pain and that the medication is working.
Continued prayers you and your absolutely stunning wife!
Alenna Peak says
It’s always a trade off ….nausea but no back pain….hoping for good results in Texas. . Praying daily for you and your family.
Robert says
Mike. My wife and I bumped into Jill Venable in Albany this evening. Her and Eric children were school mates with our children. She told me about you blog and what your going through. I don’t know how much we may have in common other that renal cell kidney cancer. I was diagnosed April 2016. Well it didn’t take long to find a Dr. to yank out my left kidney and just for kicks and giggles he invited another Dr in to yank out my spleen. I felt like the game Operation! Anyway, I will tell you before anything, I gave this little life setback to GOD from day one and have not turned back. He has opened ever door imaginable at the right time. I could literally write a book. Things were not to good following surgery. My body doesn’t like change but I can tell you I’ve been through the valley and back. Thank GOD for my wife, children, church family, employer and friends. On top of this, I was diagnosed with atrial fibrillation in June of 2016. I went from no drugs in my life to four to treat the afib and Votrient for cancer. I started Votrient last September with 800mg per day. I did this for two months and wasn’t feeling real good so the Dr cut me back to 600mg which I am still taking. Over all, I lost about 40 pounds but have maintained my weight at 175. Side effects are minimal like a little numbness in my left toes, loss of some taste and skin rashes. Check, I can live with that. So far so good. I was telling my wife this is t h e best I’ve felt in a year. But I don’t take things for granted. You know, GOD could have taken me many times in my 57 years from car wrecks to getting caught in an August in 84, but he’s not finished with me I guess. My last scan in December indicated the few small tumors I had were shrinking and they were pleased. Since then, I have blood work every month and so far nothing is out of wack. I’m due for another scan next month. Well, I’ve wrote enough for now. I hope your test come back good and I will be praying for you and your family.
Jack Basset says
You and Jill can whip anything. I love you both.
Jack