Sharing goodnews on line, Immunotherapy works, despite the recurrence!
Liver chemoembolisation tomorrow, pet scan found 1 cm met todaycolonclub colonchat
So some great news today and the strategy for recurrence 2 is falling into place. I woke at 7am for the drive to Doctor Horr of Tubingen University for my petscan. It was a longer scan than normal, still only 7 msevits. I had the choice of music, I choose Mozart. He is supposed to be the best radiologist in Germany, I think he is. Another excellent referrals from Dr copies.
Just contemplate the difference an extra 5% repayment each makes to paying off your house mortgage, well I think cancer therapy and successful treatment of a metastatic needs that extra 5% each and everyday. I had the perception that I am achieving at this extra 5% by being in Germany. Even though Hallwangis not perfect its the best by along way, I feel confident I can beat this illness with their services and support. Especially after todays consult with Dr copies after the pet resort
I meditated deep and long, eventually i drifted into sleep. I quickly gave Dr her my scan from januay 2013 that was clear and the scan from September 2012 that showed liver, spleen and lung mets, as well as the chemoembolisation mri from professor vogl.
We effectively had a pre pet review, we looked over all the old pots and discussed how they correlated with cea and my clinical history. Then the whole routine. So the key part, one clearly identified 1cm met in the liver, the same as identified earlier, and was treated earlier. what was also found was the old lung met has an SUV of 0.5 and 0.6cm, almost a nonevent. So these have been identified on the scans and will be treated tomorrow with chemoembolisation.
Dr Kopic and I discussed chemo agents, we reviewed rank. I learned something new that the mdr drug resistance really only applies to systemic chemo and that targeted embolisation does not suffer the mdr issue. I drove home feeling confident, that now I have a solid plan, that I can really beat this illness. Dr Kopic is confident, so am I. We discussed liver surgery and he prefered vogel for the remaining liver and lung met.
Dr kopic was impressed I had vogel booked a few days ago for tomorrow. He smiled, we are a good team To me I am the worlds best patient and for me he is the worlds best doctor. this means that from finding the recurrence 2 six days ago until diagnosis and treatment, all in under 7 days. This is so different to conventional therapy in sydney, where my mets were permitted to grow for 10 months and get to the extent of allowing me the 12 month to live terminal prognosis. this proactive management of cancer as a chronic condition, needs this preparedness to act when results call you to action, i could not do this so effortlessly in sydney, in hallwang this is easy.
Re personalised translational oncology, here goes a key fundamental principle, react fast and wisely with conviction. Get the scans, the tests and the information to allow you to plan the best therapy. Allowing unrestrained tumor growth is asking for death, growing tumors progressively disable your immune system.
We revised the strategy over the last few months, and I raised his decision against another vogel in march. we agreed this was not needed back then, based on my excellent scans and markers. But now a vogel back then may have been a wise preemptive choice. On the other hand saving this Vogel I until tomorrow means this recurrence is effectively targeted with a high likely hood of success.
Like in the old western movies, wait until you see the whites of their eyes before you fire. Means you save your ammunition. I am testing my immune system's robustness, learning more about its behavior. We are coming up with metrics and understanding the caveats of mixing chemo, immunotherapies and infusions. I am understanding Dr Kopics wisdom and strategy.
We coincidentally got my Berlin lab immune profile, my immune system is so depleted, no wonder I had a recurrence 2. This is the time where targeted chemoembolisation can effectively kill a specific tumor. The immune system has cleared the peritoneal mets, the spleen activity and the large liver met. Just a few to go. Another key principle is not expecting the immune system to do all the heavy lifting, its a finite resource and needs to be monitored and called into action judiciously. It's all about strategy, it's so personal. I haven't regretted at getting these monthly expensive immune profiles now, they tell the story of my recovery very well. We also discussed the clear lack of effectiveness of vaccine 4 unprimed, but this maybeto harsh, maybe those cells helped slow things down, or they may have taken out another met. The key point is I have no identified new mets, this is an incredible result given I have had no systemic chemo. Re the assessment of my immunocompetance at this point, well I don't have enough to mount a t cell response, so no point using removab at this point. I wonder if my immune depletion is a result of the sustained workload its had to do over the last 8 months. That ultimately the bone marrow can only produce a finite amount of cells. This will be a really interesting area to study in the future. so in my case its not some catastrophic immune event, or I think the tumour mutating, its likely just the immune system is exhausted. I will research this. At this point an infusion of dendritic cells, suitably primed, may support an already taxed immune system
So I am confident to have a plan of attack I have faith in, its largely similar to what worked so well for me in october 2012 with substantial disease. I cannot be overconfident, I may still have micromets in the peritoneum, which was prof morris concern in january 2013. So time will tell, and treatment is guided by clinical need, I still hae amazing health and vitality and a quality of life I am truly thankful for. Of course I have thanked God, today as everyday, but todays thanks was sincere. I had a few tears of relief, of joy as I speed through the countryside this morning and this afternoon. The fields and the forest are simply beautiful to me. Cancer beings this heightened awareness, I am grateful for that.
Coming home I will take home infusions for 15 days, which is 5 per week for 3 weeks, I will employ a nurse to help me with these each morning. I might die one day, but it won't be from colorectal cancer. I cannot wait to see my friends and family. I am as positive as ever, strangely more so, have a target and a focus helpful in giving me direction. I am looking forward to the gamma delta, the only caveat, is I will not do it if I have not boosted my immune system.
so the other therapies at home, will be gcmaf shots, 3 per week, xeloda 500mg morning and night. Maybe a couple of sessions of systemic Avastin.
I evolve, I used immunotherapies hard initially, now I am falling back on chemo embolisation and low dose chemo and Avastin to buy me time while my immune function rebuilds. This is an amazing adventure, if you have cancer I hope this gives some hope and inspiration. I think my strategy is unbeatable, its something no gold standard will ever produce.
The time is coming when doctors start practicing real medicine, not just dishing out drugs. That will be a great day for us all, patients, doctors and the taxpayers. Not for drug company shareholders, but this is just a necessary part of the health revolution, which the immunotherapy revolution is a key part.
I was so looking forward to be one of the first, if not the first patient in Australia to use removab on our shores, maybe one day soon, I hope. I was planning to bring it home this trip. Maybe next trip.
Of course this could all change depending on professor vogels assessment and treatment tomorrow.
A sincere thank you to doctor Bernard Horr, a very impressive practitioner.
When I was down I got this lovely email from a dear friend, I have so many dear friends, I am blessed, the wisdom is self evident to me, sometimes friends point out what we know in our hearts but don't realize in our heads. When I am 25 years NED, it will be my friends that helped save me. That includes God.
Hello sunshine,
Thank you for your amazing blog, it is wonderful to read about your adventures and triumphs.
I've just read about your markers results. I don't think it's all bad. I think maybe it's your body telling you, with a gentle nudge, to assess where your energy is being used up and directed. If there is energy flowing out of you towards others, that energy is taken away from your body to kick cancer.
Please do not think l am being critical of you. I have a very deep respect and admiration for you and all that you do to share with the world, and those who need it the most, your information and journey.
I care about what happens to you so l say this from a place of love and respect.
Please take the time and assess where your energies are going. I know you want to change how cancer is treated but if your not here you can't change anything. I think you sometimes give too much of yourself to others and that takes energy and emotion etc. I think you need to take time for yourself. I know your passion for what you are doing and planning for your future endeavors but pause for a moment. Stop and assess where your priorities are. Be good to yourself. Your body is good to you and listen to what it is telling you. All the treatments in the world won't keep the nasties away unless you look after your soul and your spirit. Be good to yourself. Don't give away all of yourself to others as there will be little left over for you.
Sorry if l have come across too hard. I hope you know me well enough to know that l say these things not to hurt you but l hope encourage you not to give so much of yourself to others all the time. Moderate your giving to others and balance it out with giving to yourself.
Be good to yourself.
Lots of love and hugs