We’ve been very busy here at colon cancer central this past week!
It seems like forever since I had my liver biopsy, but Dr. M (my research oncologist) finally received the report of my tumor’s biomarkers and genetic mutations. They tested 592 genes. In comparing this report with the previous report in December, he hoped to find changes in the genetic makeup of the tumors that would facilitate new ways to treat them.
Although there were no major changes in the tumor makeup, there were some changes that he thinks supports targeted therapy. One mutation my tumor previously had was PTEN, but it is now gone. Poof. He wants to use a type of drug called a PARP inhibitor by the name of Olaparib. Tumors without PTEN have shown success with PARP inhibitors. Olaparib is approved by the FDA for ovarian cancer. So he will gather his data and apply for “off label” use of this drug to attack my tumors based on the lack of PTEN. He will also do this based on other mutations with a drug approved for use in metastatic melanoma called Trametinib. This off-label request to the big pharma companies usually takes a month or two for a response. Insurance does not cover any of the cost associated with off-label drug use. He is confident that he will obtain approval.
Although this targeted treatment is not a cure, it is in the “buying time” category. I’m all for buying time so long as it is quality time. With the lack of compelling clinical trials in Arizona right now, Dr. M thinks this is the way to go for me at this time. Lee and I could relocate to another part of the country in pursuit of some more interesting trials, and I have contemplated such action now that my kitties are gone. But the stress and risk of a trial, combined with the relocation stress, along with lack of the support from our wonderful friends, make it unappealing. So we will stay put and see what choices unfold.
My last post, “Cough Be Gone” was unfortunately premature. What works for a cancer patient five months ago, doesn’t necessarily predict on-going success. In January and February, 40 mg of prednisone shut down my cough. I am now on 60 mg and still have a grade 2 cough. Of course that is much better than what was closer to a grade 3 cough previously, but a cough nonetheless. The cough scale is 0 to 3. The prednisone is doing its job of shutting down inflammation. Before prednisone I was running a 2-degree above normal fever. Yes, my darling tumors are like little internal heaters. Makes me all warm and bubbly inside, which I hate. I like my bubbly to be chilled, thank you. Without prednisone I had to alternate between Tylenol and Ibuprofen throughout the day to keep my temp down. My temp is now normal. So why the continued cough? Well, my larger lung tumors secret gunk (sorry for the technical term) which irritates my lungs, causing a cough. OK, so a grade 2 cough and normal temperature is much better than a grade 3 with constant fever. Thank you prednisone.
We had another fun cancer adventure this week. We interviewed four Hospice organizations. There are about twenty that serve our area. You may recall that we interviewed one last year just to get a better understanding of services, limitations, etc.
This time we are selecting a Hospice to utilize. I do not want to die in the ICU hooked up to blaring and blinking machines with tubes running in and out of me and nurses poking me with needles. Hospice is the best way to protect me from such misery. I would much rather pass looking out my window at the Santa Rita mountains with Lee and my friends around.
Right now I am not in active treatment so it would be off to hospital land in the event of a serious health problem. We will sign up with Hospice in the near future, perhaps as soon as next month’s medical testing is complete. This is primarily to establish a care relationship so that during the time I am not in treatment, I can manage my health in the manner I want. That will happen even if I am fully capable of functioning, walking, talking, and drinking fine red wine. I can be actively looking for trials, or while I am waiting for Dr. M to get off-label approval from the pharmaceutical companies, I can be on Hospice. They send out a nurse every other week to check on me. If something happens, no trip to the ER for Jimmy. They come to me. If an appealing treatment option appears, I revoke Hospice and proceed with the treatment. If it doesn’t work out, I reactivate my Hospice service, even while looking for new trials, if I so desire. I think it is a win win scenario. Keeping options and flexibility open while protecting me from my worst fear.
Going on Hospice early is the smart thing to do but very few patients do this. Studies have proven going on Hospice early helps people with life-threatening illnesses live both longer and better. It sure as hell does NOT mean I am ready to croak or have given up.
We selected a Hospice that has more nurses locally, instead of in Tucson, and that offers more medical services such as PCA pain pumps and IV using my chemo port. More options to keep Jimmy home and comfortable if necessary. As an added bonus, the Hospice representative fell in love with one of Lee’s paintings and is purchasing it. It is one of my favorites.
Life as a currently incurable cancer patient is unsettling to say the least, but there can be wonderful moments as well. As most of you are aware I write a monthly column for the local newspaper, the Green Valley News. I am so grateful to the newspaper for providing me this forum to enlighten people and perhaps make a difference in their lives, hopefully for the better. This past week three people provided me with an affirmation. One sent me an email thanking me for writing the column, another shared in person her journey and the help my column provided them, and the third person sent me an email asking me for help in navigating the shock and horror of diagnosis, how to do research, the questions to ask, etc. Lee and I went to their home to work with them. The Hospice representative we chose, took my book and plans to use it as an inspirational vehicle for some of their patients. These four events invigorated me with renewed purpose.
Which brings me to living life to its fullest! Next week Lee and I are heading to central Oregon to visit our friends Paul and Linda. They have a lovely home on the banks of the Crooked River, with all sorts of wildlife. Otters, beavers, deer and, my favorite: DUCKS!
Fortunately Paul has a well stocked wine cellar that will allow us to sip fine wine while we enjoy the river, the critters and our amigos.