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Thoughts and prayers requested

We have a new update, not so rosy, unfortunately.

On the positive side, the surgery was a success, Dr Hunn told us she took out every visible vestige of the disease that she could. They took biopsies from around 20 locations including residual fluids. But from the surgeon's perspective, things went about as good as could be expected, so that was great news.

The other shoe dropped last week. We met with our oncologist here and he told us that normally when they do this and they take these biopsies it is common for a few of them to show residual microscopic disease, but for others to be clear. In my wife's case, every biopsy they did showed active cancer cells. So that isn't great to begin with, but to make matters more concerning, these cells show a mutation more commonly associated with difficult breast cancer disease called HER2. In ovarian cancer this happens occasionally but is not very common, and it is usually associated with high-grade tumors that are very treatment resistant, and signifies reduced survival rates. The good thing is that her cancer generally responded pretty well to the treatment, at least as far as the blood tests and her CA-125 markers can show us, but to find literally every spot they tested to have remaining cancer cells with this aggressive mutation is very concerning. The doctor didn't even want to give us a prognosis, given this new information, but finally he said we are looking at around a 30% 3-year survival rate. Of course, it is better to know now we have this new version of this thing to deal with, rather than have it come back as a new tumor down the road. And there are some treatments, but generally this kind of cancer is very treatment resistant. There may be ongoing treatments she can do, like potentially indefinitely, that could significantly prolong her life with this disease. There are people who live a long time, decades even, with active ovarian cancer being held in check by ongoing low-level chemo treatments, so it isn't a death sentence. But it isn't good either. Not what we wanted to hear. We are ready for this thing to be done. Now it looks like there will be more chemo coming and maybe radiation, but that is less likely as HER2 make tumors much more radiation-resistant so it isn't often used, but everything is on the table at this point.

Also on the positive side, she is feeling a lot better, recovering very well from the surgery. The past chemo side effects are finally fading out and her hair is starting to come back. I was just happy to see her upbeat and positive and energetic yesterday, for the first time in months. We'll take the good we can get, that's for sure. And we are trying to keep things in perspective, as all of this could be way way worse. I mean, it isn't just entirely back to the drawing board, so that is good. At least the bulk of the disease has been removed, and she is recovering well. But it is daunting to think we have more of this coming, and an unknown amount at this point as well. We never went into this pretending it was going to be easy, and even considering my own treatment decades ago now, this is the toughest thing I have ever been through. I still wish I could take it on for her.
So so tough. I'm sorry you and your wife are going through this. Wish you some good times and smiles through this incredible pain. Heart aches for ya brotha.
 
Dang man, That middle paragraph is the worst. Makes the good stuff hard for me to cheer about. Im so sorry Log. I just cant imagine and hope I never have to deal with anything like you are dealing with.

So so tough. I'm sorry you and your wife are going through this. Wish you some good times and smiles through this incredible pain. Heart aches for ya brotha.
Thank you both. Good friends here in jazz fanz world, and I sincerely appreciate the kind words and support shown here. I do not have many friends outside of work, I do have a lot of acquaintances but no really close friends other than in my family, so I appreciate this place where I can express what is happening and get such comments of encouragement and support.
 
Good bump
Update please
 
Good bump
Update please
Ok so we met with her doctors this last week. The surgeon felt like everything in the surgery went really well, she felt like she got out everything she could see and they protected her against cross-contamination and such. She said she likes to consider this kind of scenario more of a chronic condition, not a terminal condition, and the only issue is my wife is healing slower than expected so we have to wait another 4 weeks to undergo any further chemo. So that conversation gave us hope. For the weekend anyway.

Then we met with the oncologist on Monday.

He was, let's just say, less optimistic. This mutation - HER2 - is a bear. There are studies that follow people with ovarian cancer of my wife's type, with the HER2 mutation, and most everyone dies within 3 years. Most of them started with more pervasive disease in the first place, so we do have that going for us. A lot of those other patients had inoperable ovarian cancer, meaning it had spread so much already they couldn't do surgery, and my wife's was a huge success as far as her surgery goes, so that is a big plus. The problem is that effective treatments are iffy at best for this particular combo of cancer+mutation, with a prognosis of survival past 3 years pegged around 10%. Not great. He was struggling to find what the next steps are. One treatment is called trastuzumab deruxtecan, it is a monoclonal antibody that is attached to a chemotherapy drug. The antibody targets proteins that the HER2 mutation creates and delivers the chemo directly to the cancer cells themselves. They call this antibody-drug conjugate (ADC) therapy, and there are several of these in trials now. The trials for the trastuzamab have shown rates better than 46% 3 year survival and it has just been approved for full clinical use. But he wants to keep that one in reserve in case we need it, and he wants to explore other options before going that route. There is some concern of the cancer developing resistance to the drug, so he wants to keep the stronger stuff in reserve. In short, I guess, we do not know what the treatment plan looks like going forward yet. You can tell the rarity as our doctor, at this now for 25+ years, is a bit stymied by this one. Now we have to wait 4 weeks for her to heal better anyway, then we meet with the doctor again to see what the chemo treatment plan looks like, so he can research it in between.

Another plus is that they have recently developed a test for a protein from the HER2 cells to use as a marker in her treatment, to see how much the cancer is advancing. This is very new, and the company producing it gives it to patients for free, if insurance won't pay for it. So we have 2 markers we can follow, one for HER2 specifically and one (CA-125) for ovarian cancer specifically. And right how her CA-125 markers are down very low, less than 30 the past few times they have checked (normal is anything around 50), so that is great that we now have 2 ways to track this disease.

So, the fight continues. But right now she is feeling pretty good, trying to gain some weight and muscle back (she bottomed out at 109 lbs - at 5'7" - she looked like a skeleton), and we have a cruise planned for the first 2 weeks of March to Cabo. Likely we will start treatment after that. But we need to take the good where we can find it, and right now, things are good.
 
Much love to you and your wife, Log. You guys are the power couple who will kick cancer's *** twice. Most people coming out of winter and into a cruise are starving themselves but your wife gets to train like a sumo wrestler then eat the cruise company into debt.
 
Much love to you and your wife, Log. You guys are the power couple who will kick cancer's *** twice. Most people coming out of winter and into a cruise are starving themselves but your wife gets to train like a sumo wrestler then eat the cruise company into debt.
Yeah that's true. I am trying to shed another 20-30 pounds, she needs to gain 20-30 pounds. It fits my narrative that there is only so much fat in the universe, and if one person loses, someone else has to find it. I have been taking one for the team! Now someone else can find it so I can lose. Hopefully my wife! I am likely in a very small club of men hoping their wife can gain 30 pounds. lol
 
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