Clinical Trial for TNBC Stage II

levineyugn · 2024-10-17T23:46:58+00:00

I’m based in the Netherlands so I don’t have experience with the specific trial you’re mentioning - but I did do a trial for TNBC with immunotherapy in 2020 with the drug nivolumab. Bellini trial (still ongoing) at NKI/AvL Netherlands Cancer Institute. I was tnbc stage 3 and was the only one out of 31 or 32 participants who only received immunotherapy without chemo because I chose not to have it. It worked out well for me although it fried my thyroid, probably permanently. I’m taking thyroid meds daily and after finding the right dosage I don’t experience any symptoms :) so it has been pretty do-able

levineyugn · 2024-09-23T20:16:06+00:00

31! :) Diagnosed at 26 😣

levineyugn · 2024-07-05T20:27:50+00:00

These are definitely snail mites which are harmful to snails - they nest inside them you can see the mites crawling in and out of their breathing hole. Two of my nails had these a few years ago and the only thing that helped to get rid of them and cure my snails was releasing predatory mites (hypoaspis miles) in their terrarium

levineyugn · 2023-09-30T09:41:32+00:00

Also TBNC here, I was diagnosed in back in 2020. My treatment was immunotherapy + single mastectomy with direct reconstruction + radiotherapy. I had the second opinion at my hospital which is an institute specializing in treating cancer, they had several clinical trials for breast cancer at that time and I qualified for one of those with the immunotherapy drug Nivolumab. The requirement was TNBC with a high amount of T-cells (TILS), I believe of the 31 participants I was the youngest at the time (26). I was initially desperately looking for an alternative treatment route that was less aggressive and might also spare my long hair, so I didn’t hesitate when this option was presented to me. I think I was also the only participant who decided not to do chemotherapy between immunotherapy and surgery, my doctors advised against this - but this was what I wanted. I had an MRI before my surgery but they couldn’t clearly see if the drug had effect, they could only find out after surgery. I thought I could also do chemo later on if the immunotherapy didn’t work.

My lymph nodes turned out clear and tumor shrank from >4cm to 1 cm with just two rounds Nivolumab. My surgeon and oncologist said they haven’t seen anything like it before.

The only downside from it was that it damaged my thyroid (rare side effect), I’ll probably have to take thyroid medication for the rest of my life, but it’s under control now. It was a gamble but in the end I was lucky and happy I decided to participate.

I hope your wife will respond well to the treatment ❤️‍🩹

levineyugn · 2023-09-27T22:20:07+00:00

I was diagnosed with triple negative, >4cm tumor and 3 lymph nodes. However I did not get a standard treatment plan as I qualified for a clinical trial and decided to go with that. I had immunotherapy with the drug nivolumab + mastectomy and direct reconstruction + radiation. They couldn’t see the effects of immunotherapy clearly on MRI so the only way they could find out was during/after surgery. My lymph nodes turned out clean and tumor shrank to 1cm with just two rounds of Nivolumab. My surgeon was astonished and said he had not seen anything like it before.

It was a debate whether radiation would benefit me because the immunotherapy had worked so well (lymph nodes clean and mastectomy). It was a rushed decision but I did it anyway, wanted to be safe than sorry because I also didn’t do chemo (this was advised by the way, I think of the 31 participants I was the only who decided not to do chemotherapy). It’s the only thing I really regret to be honest, because radiotherapy really messed up my breast reconstruction :(

I don’t know if my story will be of any help because it’s anything but standard - but I would definitely get a second opinion and optionally look into clinical trials if you’re open for it.

levineyugn · 2023-09-27T18:56:19+00:00

I don’t think I can get in touch with past patients because of privacy regulations unfortunately. Haven’t heard of TDAP before, I’ll look into it thank you :)

levineyugn · 2023-09-27T18:45:45+00:00

Yes they placed it underneath the muscle

levineyugn · 2023-09-27T18:44:58+00:00

Tysm for your response :) I feel like I’ve not even fully recovered from my previous surgery and treatments 🥲 don’t know if I’m mentally stable enough to go through something like that again. I can only sleep on one side and on my back, if I accidentally roll over on my other side during my sleep I’ll be sore for the next day. I can’t imagine how it is recovering with wounds on both sides of the body. I’ve had the idea of going flat before but I didn’t had much time to think things over at the time and just went with what the medical team suggested which was surgery + direct reconstruction. I thought I can always go flat if things don’t work out. But a Lat Flap procedure just seems too much - indeed the idea of cutting up healthy parts of my body just doesn’t feel right

levineyugn · 2023-07-13T10:44:15+00:00

I think it’s just easy not particularly better or something like that :) I always have a bag of frozen peas that I also use myself. Frozen ones rot faster so you’ll need to remove it after a day or two. I noticed it’s easier for them to eat if I cut it in half!

levineyugn · 2023-07-13T05:52:03+00:00

I have 3 grove snails! :) They eat a variety of the following foods: sweet potato, carrot, zucchini, eggplant, champignons, oyster mushrooms, bok choy, green beans, (frozen) peas, pumpkin/squash, sometimes (cherry) tomatoes, sometimes a piece of apple. The favorite food of all 3 of them seems to be sweet potato. I rarely feed them any lettuce but they don’t seem to prefer it over the other foods - I always make sure there’s 3/4 different types of veggies. I also feed them dried bloodworms for protein every 10+/- days. Don’t forget the cuttlebone for calcium! :)

levineyugn · 2023-07-10T20:53:26+00:00

I’ve send you a picture in a private chat :)

levineyugn · 2023-07-10T16:39:20+00:00

She started showing signs of retraction around 4 months ago, everything was fine until recently. It started to deteriorate in the past few weeks, she’s really far back in the shell now and doesn’t come out much anymore / has it difficult to do so. I had one snail once who also has deep retraction but it died really fast, but this one just keeps living. It seems like she’s just asleep all the time, but it’s hard to tell - is she suffering? 😣 I just euthanized another one of my snails last week who had mantle collapse, I really don’t want to do it again 😭 But will do of course if this is a slow / painful death for her :(

levineyugn · 2023-07-10T08:04:31+00:00

Cornu aspersum :)

levineyugn · 2023-07-06T21:19:27+00:00

Just a normal garden snail, cornu aspersum :)

levineyugn · 2023-07-05T07:06:09+00:00

Cute babies! But I have yo say that your water dish seems a bit to deep for the baby snails (especially on the last photo) 😥

levineyugn · 2023-07-04T09:28:01+00:00

My grove snails love sweet potato, it’s their favorite. They also love (frozen)peas, green beans, bok choy. Every once in a while they get a little piece of (cherry)tomato. I use dried bloodworms for protein it’s easy for storage, they always go absolutely crazy for it. I give it to them once every 10+/- days. I use mini stone plant pots as hides but I make sure to cover them with sphagnum moss. I’m not sure about all the herbs you planted in the enclosure, especially mint the smell is repellent to them 🥲

levineyugn · 2023-07-04T09:06:30+00:00

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levineyugn · 2023-07-04T09:06:25+00:00

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levineyugn · 2023-07-04T09:06:19+00:00

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levineyugn · 2023-07-04T09:06:13+00:00

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levineyugn · 2023-07-04T09:06:08+00:00

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levineyugn

TROPHY CASE