Strange, possibly hopeful realisation

[candyapplegrey]

This post mentions alternative remedies. Any evidence is anecdotal, based on my experience. Always check with your oncologist before using something they haven't prescribed.

So, I am dealing with the second recurrence and looking at third line treatment.

And wondering why my cancer (clear cell and endometrioid) stayed away for nearly three years after my first recurrence.

I tried a whole regime of vitamins, CBD and so on but eventually, there were too many for me to manage and I ended up with just fenbendazole and melatonin.

Then I realised that over the last few months, I had stopped taking melatonin altogether and had gradually been reducing the fenben to almost nothing. I took my eyes off the cancer. I started to believe that, after a series of clear scans, I was actually in the clear.

Now I am in a rush to order these items in the hope that it's not too late for them to have some effect. Of course, they may have nothing to do with it but it's still worth a try.

At any rate, it's a reminder to always remain vigilant.

Oncologist is calling today and I still haven't made up my mind what to do.

CAG xx

[Doglover1410]

hope your call makes things a little clearer for you xx

[candyapplegrey in reply to Doglover1410]

Thanks, DL. After call I am no wiser. They can't even tell me for sure whether cancer grew in 6 weeks between CT and PET which it would be useful to know. Oncologist doesn't think it did but it's all so vague, I cannot trust it. -

[Doglover1410 in reply to candyapplegrey]

Wow, well that sounds really vague and not helpful! But if he thinks it didn’t then maybe….? Hope you find some answers soon xx

[candyapplegrey in reply to Doglover1410]

The surgeon's letter had the lesion down as twice the size but as at that time I hadn't had the PET, I have to hope it was just an error.

[Doglover1410 in reply to candyapplegrey]

Oh you poor girl 🤗 like we don’t have enough to deal with!! x

[Pixiepurple]

Hi Candy,

Sorry Candy can't help with your questions. I hope call goes well for you. Interested what dosages you were taking?

Thank you.

[candyapplegrey in reply to Pixiepurple]

Well, it was a bit hit and miss with the Fenben as I had it in granules. My sister is the expert and gets the info from the Facebook page. Joe Tippens Protocol. Melatonin I was taking various amounts 5 to 20 mg a night, depending on which company I bought from. Read what Susi says below. I'm like her really. Only just discovered hospital wasn't expecting me to live longer than [edited by moderator] even though the cancer was supposedly 2a. Speaking to oncologist, it seems hospital does nothing special for clear cell. Good luck. xx

[Emcee71 in reply to candyapplegrey]

Reading with interest the hospital's prognosis (I'm Clear Cell 2B though they found no actual evidence of any spread to bowel and no cancer found on surface of ovary or in lymph nodes or ascites. Go figure.) - did they actually say that to you directly eg 'we expected you to [edited by moderator]' ?? If so that is shocking. And what did they base this on apart from terrifying negativity??

I hope the other meds work. thank you for posting about them.

Got my chemo Friday

Will be thinking of you

Ex

[candyapplegrey in reply to Emcee71]

Hi Emcee,

Face to face, I asked 'What's the prognosis with clear cell and endometrioid?' and was told I'd passed it. Shocked at time, I asked later on phone how long they expected a patient like me to live after diagnosis and I was told [edited by moderator]. They know nothing about the mixed tumour, if the endometrioid reduces or improves survival stats or how it reacts to the chemo. But I can't see how it could help. If only my cancers would eat each other!

What makes me anxious is they are so vague about everything. Well, worse than vague really but I will PM you.

So 2B? Was the cancer only in one ovary? It sounds like you should be 2a to me but don't understand it fully.

Best of luck with the chemo. Sorry slow to respond but I can only access Health Unlocked on a laptop I normally don't use.

Do not bother with the cold cap.

C xx

[Lizzieanne in reply to candyapplegrey]

Do you know which fenben you were taking and how much as have just finished my third lot of carbo and have got the melatonin in readiness but if u have any more info on fenben would be great if you could share info. Thank you

[candyapplegrey in reply to Lizzieanne]

I've started Fenben again and am now going to take 1 to 2g a day. Many people are taking far more than that. Oncologist did say that if there were a trial, they wouldn't take me if I was taking the meds but at the moment, I have already missed two trials and my hospital doesn't do them anyway as far as I can tell so I'd probably never get put on one. Postcode lottery. Taking it in the form of Panacur C granules. Can tell you where I get it in PM if you like. Don't think I am allowed to post company names.

Were you doing carbo alone, without caelyx? Hope it's working. 🤞🤞

Cx

[Susi3]

Hi Candyapplegrey,

I am also dealing with a recurrence of ovarian Clear Cell, and I will get my fourth chemo infusion this week. Considering the advanced spread of my cancer and the poor prognosis, I am hoping to get some shrinkage from chemo and buy time to get into a clinical study for targeted therapy.

Because of the poor statistical outcomes for clear cell I am allowing myself the right to try other things in addition to standard treatment that are demonstrated safe and will not hurt me. These things are not conventional standard of care, and thus the medical industry will not offer them. You have to do some homework, but you can find these offerings and support from integrative oncologists and naturopath doctors. In Europe there are also anthroposophic clinics. These practitioners offer treatments that are complementary to standard treatment.

Like you, I have chosen to take a few select supplements and repurposed drugs that are supported by clinical evidence. While most of these are not approved uses and are not backed by gold standard randomized clinical trials, there are published in vitro, in vivo, observational and case studies that demonstrate safety and possible effectiveness. A few treatments I found were approved standard of care in other countries, but not in my country. In the case of FDA cleared repurposed drugs, the gold standard safety trials have already been done. For example, mebendazole is an FDA cleared antielthemic drug that has been tested for safety. There are also many studies supporting it's effectiveness in killing cancer cells. I have found these studies by searching Pubmed. There are also numerous anecdotal reports that it has helped cancer patients.

If mebendazole is safe and will not hurt me, and considering that I have nothing to lose, why wouldn't I have a right to try? In the US at least, we have a Right To Try law that was passed in 2018.

[candyapplegrey in reply to Susi3]

I hear you, Susi. My hospital's Plan C is the same as Plan A, just with a different type of toxin. Oncologist says normal OC responds well to chemo so that's why it's all they offer even though they know CC responds less well. As for my particular mix - clear cell and endometrioid, they say they know nothing about how this reacts at all. It seems like the blind leading the blind. Thanks for your input. Do let me know how you get on with the chemo. I will look into Pubmed studies. Best of luck. xx

[Pixiepurple]

Thanks everyone for all this info. Best of luck with the chemo, keep us posted xx 😘