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This afternoon I met with Dr. Nyen Chong, a Kaiser Permanente thoracic surgeon, approximately performing a biopsy of my tumor. (Kaiser's Interventional Radiologists have said that a guided FNA not an numerous for this new tumor location.) We reviewed the location of the tumor, its proximity to 4 specific veins, some lymphatic ducts, and nerve bundles. Dr. Chong explained that the tumor location would be very puzzling although not impossible to entry. He believed he may well successfully carry out a robotic-assisted biopsy, but that the risks of serious complications (serious bleeding or nerve damage causing paralysis) have been approximately 10%. Regarding scheduling, he would not be able to hold out the biopsy until mid-June. I understood him to opine that that he would recommend proceeding with the biopsy only if the percentages of it providing info that would trade the course of therapy exceeded the percentages of the risks.
As I perceive it, the percentages that this new tumor is anything other than mets BC are very low, i.e., the low single digits. I have sent the subsequent three questions to my three oncologists (Dr. Ferrera at Kaiser, Dr. Apolo at NIH, and Dr. Hahn at Hopkins):
1. Do you agree with Dr. Chong's comparability?
2. In view of the biopsy risks, would you recommend proceeding with the immediate resumption of nivolumab without having a biopsy?
3. Or, would you insist on having the biopsy prior to my resuming therapy?
I'm leaning away from having the biopsy on account of the both the risks and the passage of time, but wish to hear hear how oncologists answer my questions. Of course, either Dr. Ferrera or Dr. Hahn will have to agree to renew treatment without a biopsy, and for me to enter Dr. Apolo's cabo/nivo/ipi trial, I'll have to first resume nivolumab, then have tumor progression. I'll doubtless persist with their consensus.
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August 12, 2017
Today my son finished his thru-hike of the Appalachian Trail. He departed from Springer Mountain Georgia on March 11. Five months and in the future later, he arrived on Mt. Katahdin in Maine. What an accomplishment!
Spencer dedicated his hike to the memory of his handiest friend, Chris Atwood, who died of a heroin overdose five years ago at age 21. Spencer's goal turned into to elevate $21,000 for the Chris Atwood Foundation, which turned into founded to support prevent opiod addiction and to distribute nalaxone as needed. He's practically there – chances are you'll support him reach his goal because of donating at https://www.crowdrise.com/fundraise-and-volunteer/donations/blazing-the-trail-to-recovery/TheCAF.
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My next infusion is on Thursday, November 10, for the reason why that Jennifer and I just again from a twelve day excursion in Scotland and Ireland to have fun our 33rd anniversary. The following recap has nothing to do with bladder melanoma and all the pieces to do with the joys of lifestyles.
Image source: https://www.medicines.org.uk/emc/images/spc/spc~30476~22~145255E.png
After an 18 month hiatus, I'm back on immunotherapy. This time I'm at the Kaiser Permanente facility in Tyson's Corner Virginia, this can be merely a few miles from my domestic. It's newer and more spacious than either Hopkins or GW's chemo components. At the appointed time, I was seated in the recliner and the nurse instantly placed an IV (since I was deported last year) and did a blood draw (I'd done my labs last Friday, but she didn't see a Hepatitis B attempt on my chart). While that attempt was running, she scheduled my next 3 infusions. Once the nivolumab arrived, she hooked it as much as the infusion machine, and it was no different from my 45 prior infusions. Here's to hoping that the effect likewise is no different, and once more I'll slide into remission.
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Less than an hour after I sent my emails yesterday to my dream team of oncologists, I obtained a call from Dr. Apolo. She noticed that in the beyond week she had reviewed by today's CT and PET scans, compared them to my CT scans of the beyond four years, consulted with NIH's interventional radiologists, and had just spoken with Dr. Hahn. She concluded that my new tumor was in a different region that my first supraclavicular node mets tumor that was first noticed in mid 2013, biopsied by NIH in September 2014, and which disappeared taking into account the fact that my nivolumab therapy in 2015. The new tumor is deeper in my chest, near my trachea, and nestled in between the interior and external jugular veins and aorta. The new tumor shares an analogous lymphatic drainage as my first supraclavicular tumor. She noticed that it is 98% prone to be metastatic bladder cancer; the different 2% is that it's a different variety of cancer. Her interventional radiologists make sure that it is too dicy to biopsy with a guided needle. She and Dr. Hahn equally agree that the risks of performing a surgical biopsy outweigh the diagnostic benefits. She and Dr. Hahn agree that I should directly restart immunotherapy, preferably nivolumab, and notice if the tumor responds. If not, then I can investigate my scientific trial features. I asked her no matter if I should stick with Hopkins, or get immunotherapy closer to dwelling dwelling. She noticed she'd recommend keeping it as elementary as possible. I thanked her for comprehensive review and advice.
Later in the evening, Dr. Hahn emailed, "Given what you have described from your physicians at Kaiser, I would recommend foregoing the biopsy and restarting nivolumab. If we can do that through the study, then extensive. If not, then treating you with any of the now FDA approved PD-L1/PD-1 brokers would be adequate too." The Hopkins scientific trial nurse is in the process of verifying no matter if I can resume medicine as a part of the ongoing study by Bristol Myers Squibb of the drug. Now that nivolumab has been approved by FDA for metastatic bladder cancer taking into account the fact that the facts from the scientific trial in which I participated, however, I don't have to be in a scientific trial to get the drug.
Today I obtained a note from Dr. Ferrera, who also agreed that the biopsy was too dicy. She has put in orders for me to resume nivolumab therapy beginning on Monday May 14 at the local Kaiser Permanente place of work six miles away from dwelling dwelling. No copay, no extra costs, no commuting to Charm City. That's convenient!
Based the unanimous vote of my doctors, my Plan E is that I'm going to resume my infusions with Opdivo after an 18 month break. I'm not sure how long I'll move, but expect it will be for as a minimum 6 months. I hope that the drug works as well this time as it did before.