Posts by Betty Wood71

I figured I’d drop an update here since a few of you have been sliding into my DMs asking how things are going.
Dad hasn't been able to touch chemo for three months now because his labs took a turn for the worse, so we decided to go with Simoncini and baking soda because there just wasn't any other choice left on the table.
He’s already finished three cycles, doing six days on and six days off.
So far, he’s actually doing better and his current condition is improved compared to before; all of his liver markers have basically been cut in half, with GGT dropping from 600 to 300 and LDH falling from 3000 down to 1000.
We’ll be doing a CT scan soon to see where we really stand, and the doctor mentioned that if everything looks the same—meaning no progression—then the therapy is working.
Even though his liver is in pretty rough shape with plenty of metastases and large clusters, Simoncini said there's still some hope because there is at least a little bit of clear space left.
It’s a start, especially since his heart is healthy, there’s no ascites, he can eat, and he can handle using the restroom on his own.
I’ll update you all again soon on how we proceed, and let's hope for the best for everyone else stuck in this same situation.

rowdyjackal56 said:Please just email me, it’s much easier that way.

I just finished reading up on Simoncini. Yeah, I know all about it, and honestly, I even bought some baking soda before ultimately backing off from that too because I was losing my mind. It’s incredibly hard to decide what the right move is, how to dose everything, or even who you can actually trust. Of course we doubt things, we ask questions, and we consult a dozen different doctors about every single thing we try. In the end, we have no idea what the outcome will be, so we find ourselves mixing alternative methods with the painfully slow pace of conventional medicine. That’s just the reality of fighting cancer. But there is absolutely no giving up; we are staying as positive as possible, and since we've seen some actual progress so far, we’ll just take it one step at a time.

We were thinking about doing this last summer too, but we hesitated and looked for other options, yet now we’ve been backed into a corner and feel like we have no choice but to give this a shot.
The doctors told us Dad had maybe a year or two left, and he spent this past year fighting hard and feeling great, which actually showed real results—his metastasis count dropped by about 30%—but then after about 15 or 16 rounds of chemo, everything just started spiraling downhill.
So, we decided to go this route once he couldn't handle any more chemo; Simoncini said the situation is tough because these clusters have formed that are really hard to break down, but we’re going to try anyway.

We’ve been using cannabis oil ourselves, and while I can't say for sure how much of an impact it's actually having, it does seem to calm my dad down and help him sleep better, plus I've heard from a few people that it helps with appetite and boosting the immune system.

Angela Wright said:So unfortunately, Erbitux isn't indicated for her anymore, so they’re moving on to something else. That cough is likely because fluid has started building up in the pleura.
I've already said everything there is to say regarding Simoncini, but I have to tell you all that you've taken some random person's stories about certain things far too easily when neither you nor she actually understands what's going on. How can you claim to have an accurate insight into her condition, and how can you possibly know she hasn't received some other form of conventional therapy?
How do you know that the cough Dad is having right now isn't a complication from some voluntary IV injection of something you don't even understand, and where are your guarantees, especially since nobody is taking responsibility for it? How can you be sure this isn't interfering with the effectiveness of the treatment Dr. Vrdoljak is providing, or even acting as a contraindication to it?
You've wandered into a massive gray area without actually knowing anything about the enemy you've decided to pick a fight with, simply because someone told you it worked for them. You've jumped into this out of a desperate need to negate that feeling of helplessness and despair, which is completely understandable, but it is incredibly dangerous. The road to hell is paved with good intentions, and dealing with the conscience later on is a heavy burden to carry. Believe me, I am struggling with it immensely today.
If you're looking for hope, you can find it much more affordably through verified complementary supplements that actually have a legitimate, proven effect.

Look, regarding Simoncini, we wouldn't be giving him anything unverified either.
We actually met with the woman from Split last year when everything first started with Dad; she told us that all the doctors had already written her off by the time she decided to go this route, and she showed us the PET scans from before and after, and we saw her again recently and she's doing well without chemo.
The cough has been happening since before this therapy started, and this treatment can't interfere with Dr. Vrdoljak's work because he hasn't been able to handle chemo for two months now. His condition started declining a while ago, whereas we only started this Simoncini therapy about ten days ago.
Since there really wasn't any other choice, Dad made the decision himself; he's a very realistic and sensible man, and he felt there was no other option but to try something experimental.
Believe me, Angela, we have tried everything and given it our absolute all, and Mom spends all day making immune-boosting preparations because she has all her own homegrown fruits and vegetables.
For about nine or ten months, Dad had an excellent quality of life and great blood work, but his condition started dropping during the last two or three rounds of chemo, so this is truly the only thing we have left.

Angela Wright said:It’s obvious that fluid is building up in his abdomen because his liver is in bad shape.
You should try sending his test results somewhere else for a second opinion, but since we're dealing with Dr. Vrdoljak, I doubt he'll be making any amateur mistakes. He needs to stabilize first before he can even think about starting a different line of therapy. There's no use in being overly sentimental here; from the very beginning, the situation was already uphill because those distant metastases were already present, meaning it's an advanced stage. At this phase of the disease, treatment options are pretty limited and basically look the same no matter where you go.
Ask Dr. Vrdoljak if they've run the K-Ras test to see if he qualifies for Erbitux. If he has the wild-type tumor cells, then it's an option. Erbitux is a smart choice, just like Avastin. I think he might be able to move to a second or third line of treatment, though I'm not entirely certain anymore.

You honestly have to accept that at this stage of the illness, the focus has to be exclusively on extending quality of life, and you need to seek help with that mindset, otherwise you're just going to make things harder for him. I'm telling you this from experience. With the right targeted therapy, he can still get some good quality time.

Thanks for the quick reply,
Dr. Vrdoljak probably approved the Erbitux already, and he should be going in for a checkup tomorrow to find out more.
The K-Ras test was done, and they said it wasn't a match.
We know his legs are swollen because of the liver, but at least there isn't any ascites yet, which is a small mercy.
Right now, his biggest struggle is this cough that's choking him, even though the last CT scan from about twenty days ago showed his lungs were clear.
We're all losing our minds trying to find some new way forward, and we've reached a point of desperation where we actually sought out a woman from Split who was saved by Dr. Simoncini—she had breast cancer with metastases in her liver, brain, lungs, and bones—and I know you don't agree with that kind of thing.
Anyway, she came to see my dad, and right now we're trying her IV therapy because we felt like we had zero other options; Dr. Jadrijevic said surgery isn't an option, and he couldn't handle chemo because of his lab results.
But at least she gave Dad some hope so he can find the strength to keep fighting.

Well, unfortunately, I’ve ended up on these forums too.
I need some help from the experienced people here regarding what we should do, specifically whether there is any point in taking my father abroad for treatment or if we’ve reached the end of the road.
My father is 74, and until just a year ago, he was incredibly vital and had absolutely no health issues, but then he unexpectedly discovered colon cancer, and after surgery, they found liver metastases that were simply impossible to operate on because the liver is riddled with them.
About a month after his surgery, he started chemo with Avastin plus cytostatics administered intravenously every 48 hours, and honestly, he handled it remarkably well without any nausea, even regaining the weight he lost and showing decent blood work.
He completed 18 rounds of chemo, but then everything just started spiraling downward because the treatment stopped working; his markers shot right back up to 1000 after they had actually dropped down to 70.
His liver started hurting, his CRP hit 170, and he ended up hospitalized on antibiotics, and while the pain has subsided slightly, his feet have started swelling, he isn't mobile like he used to be, and this cough is really punishing him.
Right now, his blood work is in no condition to continue with chemo, and Dr. Vrdoljak has changed his therapy, though looking back, he probably should have done that much sooner.
We would love to take him somewhere outside the country if there’s any hope left, but none of the doctors have ever even mentioned the possibility of seeking care elsewhere, so I noticed that Angela Wright seems to know her stuff about all of this and I’m reaching out for any help or advice you can give.
Thanks.