On Friday (June 15) I had nivolumab infusion #48 on the Kaiser Tysons Corner workplace. It changed into the 0.33 since Ive resumed my healing procedures with Opdivo, and changed into so actions that I fell asleep. The nurse reported that I changed into noisily loud night breathing. Clearly Im now now not drinking enough Diet Coke.
On Monday (June 18) I had an trade CT scan. There have been 20 americans contained in the waiting room and I resigned myself for a protracted wait, nonetheless the skills of being a day to day scanner is precedence boarding. I changed into rapidly is named in by the tech who remembered me attributable to my generous feedback and changed into rewarded with just one blown vein. Maybe 15% of nothing critically is now now not very enough? As basic, after the scan I changed into told to drink such loads of fluids to flush out the barium and iodine. As basic, I went to McDonalds for two sausage and egg McMuffins and 4 liters of Diet Coke. And as basic, Kaiser had the CD of my scans organized after my check with to the Golden Arches.
Today (June 19) I acquired the consequences of yesterdays scans. The headline is that the mandatory tumor in my neck has now now not grown in dimension. Stable disorder is multiplied than packed with existence boom. The scan literally measured the tumor to be constitution of smaller, nonetheless that may be real attributable to how the tumor changed into sliced by the scanner. Heres the fitting kind text from the neck scan:
The preceding enlarged left degree 3/four junction lymph node constitution of more cutting-edge to peer attributable to beam hardening artifact from adjacent contrast bolus nonetheless turns out to degree about 1.four x 1 cm that is borderline enlarged, though smaller than the preceding dimension of 1.7 x 1.four cm. Otherwise no enlarged or pathologic-acting lymph nodes are observed across the neck.
For my chest, abdomen, and pelvis there changed into no priceless lymphadenopathy or evidence of metastatic disorder. So yay for no tumor boom.
Later contained in the day, I went to Johns Hopkins for my a lot indisputable check with in reference to my participation contained in the Bristol-Myers Squibb-backed clinical trial that brought about the FDA approval of Opdivo for metastatic bladder cancer. Because of the FDAs approval a lot indisputable 12 months, I can get nivolumab from any oncologist with out my being in a clinical trial. I expressed my deep appreciation to Dr. Noah Hahn, and to senior clinical trial nurse Brad Wilt, and to all of the Hopkins institution of employees, for his or her occupation, compassionate, and protracted work at prolonging my existence.
I also acknowledged with Dr. Hahn his directions going forward. He steered that I wish to doubtless continue with nivolumab unless either all my tumors have been lengthy preceding, or they have been actively remodeling into. In the even that my tumors continue to develop, Dr. Hahn steered that there have been such loads of new therapies being validated on patients who had disorder pattern following immunotherapy. He acknowledged huge amounts of them a variety of which Ive prior to now blogged about and invited me to achieve out to him to speak if and when that point came. He also stimulated me to hinder with my weblog, saying what broad kind of of his patients had acknowledged to him how they have been readers of my weblog. More than a variety of had sought him out in many times dependent upon my authentic experiences with him and Hopkins.
Dr. Hahn knew that I changed into planning on relocating to Utah at some element, and steered that one of his fellows,Dr. Ben Maughan, now practices with the HuntsmanCancer Center in Utah. Dr. Maughan in general will swap into my new oncologist after i at a lot indisputable transfer my care plausible contained in the market.
Life, meanwhile, has taken an bizarre turn with my wifes bizarre prognosis of early onset dementia. Jennifers cognitive decline grew to swap into pronounced a lot indisputable October, and for the beyond 9 months we've struggled to solve the challenge. Four hospitals, eleven medical doctors, and 13 exclusively the varied drug regimens later, she retains to compliment the aid of from every body day confusion, uncertainty, disorientation, and wandering. This disorder is terrible for everybody, nonetheless turns out real merciless to strike my sincere spouse at age fifty four. After her a lot indisputable hospitalization, the medical doctors cautioned that she be transferred to an assisted dwelling facility that focuses on reminiscence care. Shes at present day residing at a reminiscence care center in Northern Virginia. After consultations with medical doctors and domestic, weve made the determination to relocate Jennifer to an trade reminiscence care facility in Northern Utah on July 2. There she ought to a lot likely also be closer to our oldest daughter, a practising physician, and her prolonged domestic.
This determination changed into educated by the very true opportunity that my disorder will enchancment and that I wont be around that lots longer to be Jennifers priceless caregiver. There is now now not very any posted knowledge to tell me of what occurs to americans with metastatic bladder cancer who've had a partial or whole response to nivolumab. Looking at knowledge for mets BC patients who've had the varied forms of immunotherapy, an editorial posted previously this 12 months tested very lengthy time in basic terms for americans with metastatic urothelial cancer who've been handled with atezolizumab. A as regards to analyzing of the information and evaluation of the charts advocate that, as quickly as there is a recurrence, a lot patients die within a 12 months.
A main limitation of this newsletter is that the information set closed in December 2016, turbo than a lot of the a lot refreshing aggregate drug therapies have been even being validated. Also, the information set is small, the age of the patients skews lots older than me, and in order that they've got more co-morbidities than do I. Plus, my refreshing scan tells me that, for now I have steady disorder. But nonetheless. I am real searching about my horrific prognosis. I have now now not any use for rose-coloured glasses, real when planning for the care of my spouse after I am lifeless.
Well get Jennifer settled into the Utah reminiscence care facility in early July. Garrett will whole his two 12 months mission for our church on July 10. Spencer and Kirsten will connect us in Utah for a variety of days, and smartly have a Brothers domestic reunion the most time the full varied persons ought to a lot likely also be collectively since March of 2016. Garrett could have solely a variety of weeks to transition into traditional existence turbo than he matriculates at Carnegie Mellon University in Pittsburgh, so at some element he and I will fly to get back to DC to rearrange for institution.
Im scheduled for infusions with the aid of Kaiser on June 29, July 16, and July 30. Ill ask to have a PET scan in late July or early August, which ought to a lot likely also smartly also furnish multiplied notion into regardless of whether the nivolumab is strolling. Notwithstanding the consequences of yesterdays scan, I have now now not been protecting out wish that Opdivo will work as smartly this time, for three functions. First, Dr. Hahn prior to now told me that, in principle, the nivolumab wish to have taught my immune machine to kill each cellphone that had a PD-L1 enzyme, so any new tumor boom is doubtless an trade mutation of my mutation-rich metastatic bladder cancer. Second, my unique mets lit up on CT scans heaps multiplied than this tumor, a lot fascinating me to wonder regardless of whether its a such loads of category of mutation. Third, projecting wish takes such loads of calories, and my calories has been directed in such loads of components in up to this point years. Given that I have now now not any regulate over my cancer, I have came across that I deplete a long way lots less emotional calories by accepting the small print of my prognosis as it be, versus scenery myself up for a dissonance between what ought to a lot likely also smartly also be pretend expectations and reality. Plus, Id moderately be pleasantly bowled over than bitterly disenchanted.
If and after i in finding that nivolumab isnt strolling, Ill appearance at my next alternatives. That ought to a lot likely also be Plan F. Ill attain out to Dr. Hahn and Dr. Apolo, amongst others. For some traditional rationale, there are more clinical trials accessible contained in the DC sector than in Utah. Go determine. So a lot likely Ill retailer in DC longer, or return and forth to get backward and forward between Utah and DC as priceless. I knew there changed into a rationale we hadnt bought our condominium but.
If, notwithstanding the indeniable truth that, I be told in August that the Opdivo is causing my tumors to cut back, then Ill in general relocate to Utah after I bring Garrett to Carnegie Mellon. Ill hire a sector someplace between Jennifers assisted dwelling sector and my grandchildren and appearance for goodness and pride every body day.