Tag: rare cancer

Sending Off the Scans

Somehow, someway, under some miracle, my husband has actually taken the initiative and SENT HIS SCANS TO THE EXPERTS!!

Let me back up.

Earlier this month, my husband went in for his second scan post chemo. His first scan showed this “thickening” on the bladder/kidney area, which scares the bajeezus out of me since this is what I hear all the time on my Appendix Cancer Facebook page of what indicates a recurrence. So I was really hoping for some clarity with this most recent scan — but, I didn’t really get that.

Our appt was on a Tuesday. We got to the office and did our COVID screening, no temps, no travel, no symptoms, check. Mask on, check. My husband is taken back to get bloodwork (he ended up going through with the port removal, so they had to stick him this time in his vein to get the blood — sort of serves him right, lol) then we’re directed to sit in the waiting room and wait for his name to be called. I’m not really nervous this time around. I don’t know if my husbands calm demeanor or his take-it-as-it-comes attitude has finally worn off on me a bit, but for some reason, I am not nervous going into this appt. We’re called back and they get the normal set of vitals, they get his weight and once the scale lands on a number, my husband takes his hand and hides the digital readout so I can’t see the number!! He says, Don’t look! in a joking voice. Well, haha, that’s not going to happen! Also, the nurse needed to see the number so she could record it. His weight: 180.2 lbs. That is a full 40+ lbs LESS than what he weighed before all this started! I mean, lets be honest, I’m not mad at it! lol My husbands new slimmer, more narrow build is NOTHING I’m mad about! But to see that number, it really puts it in perspective the physical change he’s gone through. Sigh.

So our oncologist enters the room, sits down and starts a little small talk. She gets to the scan and says, Welp, there is nothing that I see. Everything looks the same as it did last time. I let her finish her thought, and I ask about the thickening area on the bladder that was noted last time. She said that the area remains thickened and there is no change from last scan. So I turn to my husband and tell him that we should send the scans to MD Anderson. The oncologist (who, might I remind you, we don’t really like) looks at me with this discontented look and asks me what I think the thickening means? I tell her that I’m not sure, but it could mean something and that the specialist team might be able to give us a better picture of what it might or might not be. Honestly, no harm no foul. I know this oncologist we have is not a specialist and I don’t fault her or the radiologist who interprets the scans for not knowing how to properly evaluate them for my husbands rare cancer. It just is what it is. But I wanted to make a point to say something.

And good Lord, it’s a July miracle! Almost a week to the day from our meeting, my husband got a hold of the oncologist we met with at MD Anderson and nonchalantly, almost in passing, like it was no big deal, informed me that he sent his last 2 scans to him.

WHAAT??! OMG!

I was so elated I basically fell out of my seat when he told me. He did this without me having to nag him. He did this without me mentioning it 20 times. He did this all on his own! I feel like such a proud wife! lol I just want to squeeze his cheeks and pat him on the head and say Good job, buddy! I had the BIGGEST smile on my face when he told me about this, I just could NOT believe he took the initiative and did this on his own! I was SO happy! I was SO relieved! Maybe some of my harping on expert opinions and making sure we involve the specialists is wearing off on him?

So now we’re back to waiting on what the experts have to say about the scans. At least this is progress!

In other news, we ended up having my daughters high school graduation party and it was a HUGE success! I know, I know, covid, covid — blah, blah, blah. I’m over it. We were safe, we had a big portion of it outdoors (yes, in the July heat, in St. Louis, it was H-O-T, so that’s saying a lot!) and I was so happy with the turn out! They had a socially distanced outdoor graduation ceremony and it was actually AMAZING! There were awesome pyrotechnics and even tho it wasn’t a “normal” graduation, by any stretch of the imagination, I still got all the mom feels about seeing my daughter walk across the stage and receive her diploma! In the end, it didn’t matter that it wasn’t a normal graduation, she was graduating, and I was proud!

Now we’re in the throws of figuring out what to do with this upcoming school year. Our youngest will start Kindergarten, the middle-est will be a Sophomore and my oldest will be away at college. Trying to understand the plan for the Kindergartner is my top priority since working full time and having a full time 6 yr old at home is really not a plan at all. I’m sure it will all work out in the end, but it still makes me nervous not knowing how things will turn out. I can only hope that by the time my middle child is a Senior, all this will be done and over with and we can all go back to normal!

Geneticists and Supplements

Quick update. We met with the geneticist yesterday who was, simply put, awesome! Both Andy and I loved her! She was kind and caring, she told us that we were the most proactive consult she’d had in a couple months! Which, made me feel amazing — since I’m basically the only reason we’ve been proactive, lol

The information she had to offer was profoundly interesting, especially since I’ve become a bit of a medical terminology nerd, she had a lot of fun new facts to whet my appetite for this kind of data! She looked at the genetic testing we had done on the tumor itself and rattled off some specific syndromes associated with elevated markers that she’d like to include in Andy’s genetic testing panel. As I said, it was incredibly interesting for me. Here is what the testing on my husbands tumor revealed:

  • KRAS – Mutated, Pathogenic Exon 2 | p.G12V |c.35G>T
  • ERBB2 (Her2/Neu) – Negative | 0
  • Tumor Mutation Burden – Intermediate | 9 mutations/Mb
  • PTEN – Positive | 1+, 35%
  • PD-L1 (SP142) – Negative | 0
  • TP53 – Mutated, Pathogenic Exon 5 | p.P128fs | c.383delC
  • MYC – Amplified
  • Therapies listed with “Lack of Benefit”
    • Level 1 category: cetuximab, panitumumab
    • Level 3A category: lapatinib, pertuzumab, trastuzumab

She kept in mind the reason behind us seeking additional genetic testing on Andy himself (as opposed to on the tumor, which is what you see above) — our children. If Andy has something that can be passed down, we want to know so we can be overly proactive in treatment for that. She recommended a pretty extensive panel, a bit more than she would normally recommend because we are essentially missing half of Andy’s genetic story. My husband is adopted, and even tho we have recently (in the past 5 years) connected with his birth mother and her family, we still have no clue about his birth father. We cannot find him no matter how hard we look. So we have a big black hole for that part of his genetic past, hence the broader panel, to check for quite a bit more than the typical person who can trace family history back a couple generations on both sides of their gene pool.

She recommended an additional step for us as well, blood banking. In her words, Andy has a “really big cancer” and if this genetic testing comes back as completely normal or inconclusive, it doesnt mean that in 10-20 years, when technology has progressed even more, they won’t find something that can be the reason he got this, and possibly offer a cure or additional insight. But, we have to have his genetic code in order to do that and if the worst happens, and he is not around in 10-20 years, blood banking is the only way to continue testing when technology catches up. This seems like a morbid thing to talk about, and our geneticist made it clear that she does not take the conversation lightly and she doesnt give this option to every patient in every consult, but she was offering it to us because of the rarity of my husbands cancer and the “big-ness” of it. Take that for what it is, but we ARE planning on banking his blood. So let’s not think about it and just do it. You can never be too prepared.

On a completely unrelated topic; When we were in Houston speaking with the oncologist, he said something that really struck a cord with me, and as I’ve sat with it for a few days now, it’s really been making me think. When I asked him about things that we could do to get Andy’s body prepared for chemotherapy, or to increase the efficacy of the chemo, he said a low fat diet. Ok, well I guess that is info, lol but then he said something about supplements. I have been a bit of an organic food & supplement fanatic over the past 3 months since all this started. I was introduced to the Medical Medium and his celery juice craze, and since doing some research and listening to podcasts and reading a ton of material about plant based diets and supplements and vitamins, I have completely bought into it. So I have exponentially upped the fresh fruits and veggies I buy and have tried hard to incorporate them into my family’s diet — but especially Andy’s diet. Now, I’m not a crazy person, we still eat meat, I still cook bacon if my kids ask for it, but I have decided to switch to mostly organic produce and meat. Yes, its more expensive, but you know what is MORE expensive? A $129,000 hospital bill. Yep, $129k. That’s the bill we got from Andy’s MOAS surgery. We don’t have awesome insurance, but in times like these, THANK GOD for health insurance! I digress. In addition to my new-found organic way of life, I also have my husband on a fairly strict regimen of Juice Plus gummies and daily vitamins/supplements. They go something like this:

Andy has complied (begrudgingly at times, lol) with my request that he start taking these vitamins at least 4 weeks prior to starting chemo. I have tried to get him on board with the celery juice, which I do every morning, but he has a problem with the fact that he can’t (well, isn’t supposed to) eat or drink anything for 30mins after drinking the juice for it to be effective. So I have stopped pushing the celery juice in favor of keeping him on the supplements. So far, I have been met with only a little resistance, but he continues taking them anyway, so that works for me 🙂

Back to my point, the oncologist at MD Anderson in Houston said that there is a lot people can do to prevent cancer, but the preventative advice — where you are being proactive and hedging against getting cancer, is VERY different from the advice you should be following when you HAVE cancer. And that really resonated with me. I think far too often people think these 2 are one in the same.

Think about that. The things you do to try to be healthy, eating right, taking supplements and vitamins and living an overall decently (hopefully?) healthy life are DIFFERENT than what you can do for yourself after you are diagnosed with cancer.

Honestly, it never occurred to me that the things you would do to try to prevent cancer are very different that the things you should do once you already have cancer. These supplements, I have learned, sort of fall into the preventative world. There is physical research that 4000iu’s of D3 per day is helpful in aiding successful chemotherapy outcomes for colorectal cancer patients, but the majority of these other things are really on the wrong side of the cancer equation.

And this is where people get confused. You hear about people who refuse cancer treatment by tried and true PROVEN techniques in favor of a vegan diet or acupuncture or some alternative medicine that includes herbs and supplements to try to cure their cancer. Listen, I am not one to judge anyone, but if you are refusing treatment because you think your sister’s best friend’s uncle’s grandpa who was in Vietnam during the war and came across a healer who told him the secret to healing, and you think that secret will cure you of your cancer … you’re doing it wrong. These things WILL NOT CURE YOU. They may prevent you from getting cancer, but once you are already in that statistic, it’s a whole new ballgame.

Does that mean that I’m going to have my husband stop taking the supplements? Nope. Not at all.

Am I going to encourage him to continue taking these WHILE he is also doing chemotherapy? Yep. Yes I am. Here is the thing, none of this is going to hurt my husband while he is on chemo, and getting his body prepped to take the chemo a little bit better, even if its just a psychosomatic response, is okay with me. Plus, I’ve never got him to take a supplement before in my life, so I feel quite accomplished in my persuasive skills that I’ve been able to get him this far. 😉 You know what WILL hurt and has been proven to hinder the efficacy of chemo? You guessed it. Smoking. Now, if I could only get him to QUIT SMOKING! face-palm