As of my last update, I was scheduled to begin round 6 of chemo (Cisplatin/Etopside, final round before re-scanning) on September 13. However, due to my worsening side effects (hearing loss, ear ringing, neuropathy, bladder weakness) my doctor recommended an additional 2 weeks off of treatment. During that two weeks, they wanted me to see an audiologist to evaluate the extent of my hearing loss.
On Friday (9/16) I went to see the audiologist and they determined that I do have significantly deteriorated hearing for sounds greater than 2000 Hertz. This is mainly consonant sounds and the voices of women and children. The result is not so much that i can't HEAR, but that I can't decipher what people are saying. Especially if there is any type of background noise. I also have a lot of ringing in my ears, an almost constant low buzz with occasional loud, high pitched rings. To (hopefully) resolve all of this, I will be going back next Friday (10/7) for a hearing aid evaluation.
In addition to getting the hearing aids, I will also be switching one of my treatment drugs effective immediately. I am switching to something called Carboplatin instead of Cisplatin. These are both platinum based chemotherapy drugs, generally used to treat high grade cancers. Carboplatin is similar to but slightly less harsh than the Cisplatin. Many people have reported lesser side effects after this change. In addition, this is less toxic to the kidneys so my first day of treatment isn't as long since I don't have to receive 3+ hours of hydration fluids. I started on this regiment today for Round 6.
Last week we flew down to New Orleans to meet a new specialist and attend a conference. We were lucky enough to get some travel grants to help subsidize the cost of this trip as well as 3 nights of no-cost lodging at the American Cancer Society Hope Lodge. While in New Orleans I received something called an Octreoscan as well as met with a specialist at the Oschner Medical Center. Oschner has a program called NOLA Nets that has a whole team of doctors, nurses, etc. that specialize in neuroendocrine research and treatment. The Octreoscan is different from a standard CT or MRI. I was injected with a small amount of something called Octreotide, which is attracted to certain receptors that could be present on my tumors. If those receptors exist then the Octreotide would cause those parts to "light up" on the resulting scan. If these receptors existed, that could potentially open up some new treatment options.
As of now, the results hadn't been read and provided by the radiologist, but when I met with the specialist he said that he did a quick review and didn't see anything that stood out, so it is likely that I do not have those receptors. Other than that, his recommendation for treatment was not much different that my current plan here at Karmanos. Going forward I will consult with both doctors and all my records from Karmanos will be sent down to NOLA as we go along. However, for the most part I will still receive what ever treatment is decided on between both medical teams locally here at Karmanos, and unless something drastically changed or I just wanted to meet in person, it will likely be unnecessary for me to travel frequently to NOLA for anything. The plan of action was that I would make the aforementioned switch to Carboplatin for Round 6, and get my previously planned post-round 6 scan about 2 weeks after (scheduled 10/13). Further plans will be made once the result of that is known. Essentially if the tumors are stable (same) or further reduced from July, I would continue with 3 more rounds of the Carbo/Etop combination and then scan again. If there is any growth (of the existing tumors or in new areas) then we would switch to a new drug for Round 7. The likely drug that I would get in this event is called Folfox.
The National NET Patient conference started on Thursday last week and ran through Saturday. The conference overall was a good time and we met some interesting people that we will stay in contact with and got a lot of information in general. The disappointing part was that the majority of the conference was geared towards the more common "Well Differentiated" or "Low Grade" type of NET, where as I have the "Poorly Differentiated" or "High Grade" version of NEC (Neuroendocine Carcinoma), which is more aggressive, more rare, and most often does not share treatment options. The speeches by doctors and other medical professionals were heavily prefaced with statements saying they were not applicable to High Grade tumors. Despite this we did get some good information, some cool zebra/NET swag, and a chance to do a little exploring in a city we had yet to travel to. Those of you that are our friends on facebook can see some of the things we were able to do, like live music on Bourbon Street, some cool local restaurants outside of the main downtown/French Quarter, lots of oysters for Alan, and of course, beignets at Cafe Du Monde.
It was nice to be home, but to be honest I was dreading going back to Karmanos today. For the past week or so I have been feeling so good. The chemo side effects had mostly subsided. Less neuropathy, no nausea, less fatigue (but I still sleep/nap more than a normal person should), and no stomach pains. I ate to my hearts content in NOLA and didn't experience any odd stomach issues. I had been terrified of the tumors growing a lot on my extra 2 weeks off. Although we can't confirm if there was any growth/reduction until the scans in a couple weeks, mentally I am telling myself that since my pre-diagnosis symptoms didn't return that it wasn't growing out of control just to keep my attitude positive. But after all of that, the last thing I wanted to do today was go back and get more poison pumped into my body that I am reasonably sure will have me feeling like crap within a couple of days.
Well, I think that is all for now. I probably won't write again until after I have my scan results in hand, which will be after my doctor's appointment on 10/19.
Thanks again to everyone for all of your comments, love, prayers, and just general support.
<3
