6/22/16 – WOW… it’s like I am a school kid starting summer
break. I met with Dr. Goy today with the expectation that I would be starting
PD-1 (Opdivo) today. We started with reviewing the results of my PET scan (yes,
I had a PET on 6/20 in preparation for beginning PD-1). Dr. Goy happily reported
that all was clear. He then said “you have been through a lot and now you are
doing so well. I think you deserve a break.” He then proceeded to tell me that
he wasn’t going to start me on PD-1 today. He wrote a script for another PET
scan in 6 months… at that point we will see how I am doing.
In truth, I am a
little relieved. If my scans are clear and I am doing well, why introduce a new
drug when we are unsure on how I would respond to it. I would rather take a
break and enjoy my good health. So, I am really happy with this decision.
My next PET scan is scheduled for December 19th. I
also have a bone marrow biopsy schedule for September. This is to follow up on
the MDS… but I am not even thinking about that at this point. I have an entire
summer in front of me to enjoy.
In celebration of my good news and time off, here is a link
to the Rock N Roll classic “School's Out” by Alice Cooper.
Return to your rest, my soul, for the Lord has been good to you.
Psalm 116:7
http://mantlecell.blogspot.com/
6 comments:
AWESOME NEWS!! As you noted - Enjoy the good health!!
Blessings,
John & Chris
Hey John and Chris,
Thank you so much. It is so great to get to enjoy life. I am even going to get to the beach this summer... and yes I will of course use lots of sun screen. Hopefully we will get to see you at Celebrating Life and Liberty this year. Also you, Jim and me need to get together for a beer and a burger some time soon.
Thanks again,
Rich
Rich, I rejoice with you in this good news! I have read every one of your blog posts since I was diagnosed with stage 4, MCL last March. I am a 57 year old physician who lives in Salt Lake City, Utah and have experienced a slighlty different, but still very similar course as you did in your early years of treatment. I am currently in remission after an autologous Stem Cell Transplant on Thanksgiving. This experience has most definitely changed my focus from too busy all the time, to making time for myself and family and others. First and foremost - my relationship with God. I have appreciated your overall positive approach to all this and especially your connection with God honoring music. I hope that you truly do have the summer of your dreams and that God continues to hold you very close to His heart.
Warmly,
Bret
Hey Bret,
I truly feel honored that a physician would take time to show interest in my blog. I am thrilled to hear that you are doing well. I couldn’t agree with you more, illness certainly hits us with a dose of perspective. We learn to live, love and laugh better than we have ever done so before. Then there is knowing and sharing “How Great God is Our God.” By taking on all life brings us with grace, we can handle anything. Thank you so much for your very kind words. I will keep you in my prayers and that the gift of good health stays with you for many, many years.
Peace,
Rich
Hello Rich,
I am writing to you to say thank you for posting about your experiences over the last 8 years. My father was diagnosed with Mantel Cell Lymphoma this month and its been a shock for us all as a family. He is my dad after all. However, after reading ALL your post, each and every word of it, for the first time since his diagnosis, I have felt truly at ease. I know you have had some rough times and its been a journey that you are constantly on but I am going to share your story with my dad so that he can see from a perspective of someone living his reality, that there is hope. The internet is a scary place indeed, we are in the position you were in, in 2008 when you first started researching and the statistics are never in your favour. I am truly grateful that I found your blog and I really wish you all the best on your journey and will continue to follow your progress over the many years. Your blog has influenced the lives of a little family all the way across the world in South Africa.
Kind Regards,
Jess
Hi Jessica from South Africa,
I am so sorry to hear about your Dad’s Mantle Cell Lymphoma diagnosis. There is no doubt that getting this kind of news is a lot to wrap your head around. My advice is that by being positive and keeping faith you can get though anything. If my personal journey tells you anything it is that there are fantastic medical advances being made every day. Please feel good that the best of care is available for your Dad.
I do want to thank you for your kind words about my blog. It started as a way to keep my family and friends up to date about my health and due to the power of technology it has connected me new friends on the other side of the world.
Your Dad is truly very blessed to have such a wonderful caring daughter like yourself. Please pass on my very best wishes to you Dad. I will keep him in my prayers.
Peace be with you and your family.
Rich
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