June 18, 2017 at 12:17 am #93226marionsModerator
Michelle….echo all the others, you rock.
MarionJune 17, 2017 at 3:22 pm #93225debnorcalModerator
I agree with Hercules. You are an inspiration!
DebbieJune 17, 2017 at 10:26 am #93224herculesModerator
Good for you Michelle, you are a champion! Keep fighting and keep being your own advocate, You have made all the right choices. May your success continue, PatJune 17, 2017 at 5:48 am #93223spokanemomSpectator
Thank you so much for sharing your story!June 16, 2017 at 11:53 pm #93222karendSpectator
I LOVED reading your posts today Michelle!
Sending you a big hug from New York
-KarenJune 16, 2017 at 5:28 pm #93221positivitySpectator
Wow! What a journey and warrior, and you don’t give up and you make the decision based on your needs and not always to the advice of a doctor. You seem to have a positive outlook which helps. That’s the unfortunate side effects of chemo the lower RBC and WBC and platelets which makes it tough for the body, and should be stopped as this can do more harm than good. You seemed to get the breaks as needed. I can’t wait for the day when gem/cis is not the standard treatment and there are other options where the patient doesn’t have to wait and can make the choice from the first appointment.June 16, 2017 at 4:52 pm #93220
So here is the update on the actual treatments I have received… I
August 2015– I had SBRT to my spine and a meningioma in my head…( it is not cancerous but a benign finding on MRI)
September 2015 – started chemo- gemzar/cisplatin
December 2015- took a small break for the holidays and to recover ….. was having low Hemoglobin counts and requiring frequent blood transfusions.
January 2016- jumped back on the gem/cis train. Cancer was stable with perhaps some shrinkage. BUT nothing new….. holding steady. I also went back to work full time with a gracious work schedule that involved teleworking.
May 2016- oops need a break again …. those damn red blood cells giving me trouble and needing transfusions. Cancer with slight growth but STABLE
JuneJuly 2016- trial of oxaliplatin… thinking it might be easier on the blood counts.
Had terrible reaction… affected my eyesight… a under reported and rare side effect.. My optic nerve was irritated… Stopped and it corrected itself.
August 2016- back on my old friend gem/cisplatin.
October 2016 – BREAK…. getting ready for clinical trial.
November 2016… off to DUKE and participated in ABBVIE 399. Well here we are with some growth 17%… not enough to come off trial until BAM!!! I can’t see well and I am in the worst pain of my life….. and yes I now am off trial.
January 2017- back to work and having another break… time to think….. I am still stable living with what I have but what to do ……
Feb 2017– WHY not do SBRT…. first new radiation oncologist freaked out …. NO way … go home with palliative care…. and maybe a new spot of cancer in my SI joint though it has been there since 2015. He said I was ” too healthy and active … that he didn’t want to see that go away as there was quite a bit of risk in the treatment I was asking for…….. WHAT … to Well….. I wanted to say ” You ASSEHOLE… I am going to die without treatment” What a stupid and uniformed thing to say…. so I hunted down my old radiation oncologist,….. and within an hour of that repulsive appointment I had a YES and not too far away…
March 2017- SBRT to my left lung nodules and SI joint…. Hallelujah!!
March/April 2017- Xeloda 1500 mg BID
May 2017- welcome my old friend back gemzar/cisplatin….. got to kill a little of the cancer since xeloda was not ready for the battle…URGGH
June 2017- waiting to complete SBRT to my last lung mass… this one is tricky…. taking lots of doctors thinking outside the box….. but yup we can do it… however oops….. those damn polly wags…. two too small to measure spots in my liver…. DAMN. What to do now…..
July 2017 — clinical trial… Against my own advice i am going…. those things make me so damn nervous…. Agreed with great new doctor that we will radiate my lung…. its becoming a problem and then I will graciously leave my liver lesions for acceptance in trial… versus zapping those too. Strange to think I am saving some cancer … that it is needed for treatment ….
And so that is where I am these days…. living successfully with cancer…my friend and bitter enemy… NO FAILED ATTEMPTS Only SUCCESSES !
MichelleJune 16, 2017 at 4:09 pm #93219
I thought I would come back and give an update. Since my last post so much has happened and I feel it is important to talk about for several reasons. The first is this……….
Yesterday i had an appointment with a new doctor. He is the founder of a research center that is currently holding about 20 phase 1 clinical trials all of which are immunotherapy. As I was giving my cancer story he was counting the lines of treatment I have received. He felt comfortable enough to talk to me straight as a medical professional and I am sure the story sounded like a linty of medical terms and professional jargon to my poor sister in law who was attending the appointment with me. As the appointment continued I started thinking about this journey. To me it was just chemo and radiation with a side of clinical trial..lol BUT for the FDA it was a list of what we called failed attempts. I was up to my 6th line treatment by the time the story finished. I couldn’t believe it.. to me it was just different bouts of gemzar/cisplatin…. our normal cocktail for this cancer. To me there didn’t seem so many treatment attempts and then I began thinking what this journey must look like to those who are not living with cancer… crazy.
As everyone knows from my previous post I have had a long journey with this cancer. This August will be 6 years. I know her well. At this point in time I feel it is my constant life companion. We live in close proximity to each other and are in constant war…. I knock her out for awhile and then damn is there not a bitty tadpole taking up shop..
I am doing well … strange to say throughout this journey and it was strange to think that I have failed treatment attempts because honestly it was not treatment failure to come on and off chemo, try a clinical trial, and recently to radiate the crap out of these guys. To me they are all winning treatments…. I am still HERE. His recored of failures was my monologue of wins. To me it was a journey of keeping this beast at bay. Tucking in Sally’s babies and sending them on their way. And so today I think what will medicine do with a rapidly growing group of stage IV cancer survivors. For me this has become a chronic health issue. I am not seeking cure as I know we are not there yet BUT I can live with the cancer I have if we do it smartly…. staying just one step ahead of Sally’s babies. So…. the question is how do you live with cancer….
This is the question we need to explore. Life becomes a constant vehicle of change. Their are moments of crisis and then times that you take a pause… hold still ….. and then ramp it up again. As treatments progress and new drugs are approved we are going to see that this now small group of survivors are going to grow , going to heal, and finally maybe even see a cure…. HOWEVER we are going to LIVE.throught it all. As one of my favorite doctor says ” we are going to kick the can down the road ” until we are there!!June 16, 2017 at 3:43 pm #93218
Thanks so much. I tend to do most of my chatting in the face book groups but I am glad to come back on and share my experiences with everyone. I hope you are doing well also. I have had a bumpy few months but feeling much better these days. Still fighting this ugly beast.June 5, 2017 at 3:57 pm #93217herculesModerator
I am glad to hear from you Michelle, I was beginning to worry , although many on this forum can be silent for a while, I had hoped you are alright. I have thought about you, it is good to see your post, god bless, PatJune 4, 2017 at 7:41 pm #93216
Thanks for your encouraging words. I am sharing my update today. you are right we should keep sharing and hoping that it will help others to keep on fighting.
MichelleMay 28, 2017 at 1:35 pm #93215fquailSpectator
Just read through your wonderful post. As posted recently elsewhere here, I too have a had a good run after my initial diagnosis (~4 years), but the sucker has come back. Like your reference to Sally Toad leaving some tadpoles with her departure. But, yes, it has been amazing the developments and alternatives in just four years. To all the survivors out there, let’s stay vigilant but keep fighting. We all have much to live for. And let’s continue to share what’s working in this wonderful forum!September 22, 2016 at 3:12 pm #93210maikkiSpectator
As a fellow CCA survivor, I applaud you! Your energy and desire to make sure survivorship is known is inspiring and I share your thoughts whole-heartedly. Thanks for your story!September 21, 2016 at 6:37 pm #93211
Thanks everyone… I think each and everyone one of us should really think about how we are survivors. For me there is no thought of giving up…. and I am inspired by each and everyone of you who have shared. There are more long term survivors out there than we are aware of. I think this is because the medical literature has not caught up with what is the reality. People are living and succeeding in having a meaningful life with this awful disease. It is my vow to somehow put something out there in the literature that will demonstrate this. There is survivorship with this cancer and by sharing our stories we will hopefully encourage each other and maybe inspire medicine to start documenting that. Hugs to all my cca fighters!!September 16, 2016 at 10:34 pm #93212whatnowSpectator
Truly this is what I need. Started Chemo the day after my birthday August 30, 2016. I feel just fine and Chemo is not making me sick (I almost hate to say this like it will make it start). No talk of surgery or when next scans. I need to ask more questions. You are a survivor and your “long” story was music to my ears.
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