last Thursday I was taking 8th weekly carbo/taxol chemo when I got severe reaction to carboplatine (red skin and feeling nauseas, in pain).
They made CT scan and concluded that also this chemo didn’t work (I had 3 Caelyx/carbo before).
My bowels walls are thickened from cancer and there is more obstruction which is why my belly is bloated and I can’t eat (lost 20 kg). Furthermore they found lung embolia and some ascites in my belly.
They said that here in the Netherlands, they don’t have anything else for me and basically have weeks to months left.
I am 42 year old, just got married and I promised my husband to grow old with him.
I cannot accept this and want to try anything to heal myself.
If anyone can have any idea which direction I could go, god bless you for sharing with me.
This comes at the most beautiful time of the year 😔 so I want to wish you all merry Christmas and mainly healing powers and health ❤️🙏
Thank you,
Bea
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Beatyourself
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Are you platinum resistant? Me too. I was on gemcitabine single dose for over 7 months ( weekly) and worked. When my cancer is active, I get PE ( pulmonary embolism) which hematologist put me on dalteparin 0.5ml syringe and worked. I am sure there are quite few ladies on here who are platinum resistant and on different meds/ chemo/ treatment. I have clear cell. Mines repeat recurr and spread but at the moment, very stable. Hopefully having another CT next month after my winter holiday in far east.
Are you on picc line? To get nutrients? Can you get second opinion from other doctor in different hospital? Have you contacted Ovacome too? They might be able to help.
Hope this helps and other ladies can suggest or share their experience.
Sending you loads of love and healing light to your way. Thinking of you 🙏
So sweet from you to deliver some hope for me before Christmas.
One doctor from Austria indeed suggested I try single gemicitabine but my doctor is convinced it won’t work. I don’t understand why they are closing all the doors here 😒
I will fight for my life 🙏
Wish you all the best and merry Christmas holidays ❤️
Hi Bea. Oh, a doctor in Austria suggested gemcitibane! I don't know why your doctor convinced it won't work, it worked for several people with sometimes combination of other drugs. I definitely recommend going with the doctor in Austria. When there are still options and suggestions, we should all go for it. Nothing to lose trying other options/ suggestions. Please go with the doctor who suggests you..
Single dose gemcitibane lasts about 30-40mins, and weekly was really tiring but at the end, it was worth it for me. A few tumours were gone, rest were stable or shrunk. Sending you lots of love 🩷
Fatigue was the main one for me. I didn't get too sick either. But just incase, I asked for low dose of steroids before the treatment. You might feel different though. 😊
hi, have you been offered Avastin or Elahere (newly approved in EU) already? Maybe trying some trials in Germany? Trial website for germany: studienportal-eierstockkreb...
So sorry to hear that. It looks like you are platinum resistant. You can try ADC Drugs. They have launched in Europe I believe. They have lunched in China this Oct. It works on Platinum resistant patients.
Good Morning 🥰, I seriously think you should get a second opinion abd a 3rd opinion too if need be. The gembiticine sounds an option, also what about maintenance drugs olaparib, or elahare? Ask the questions and tell the oncologist you are young and not anywhere near giving up so they shouldn't be either 💪👊🫶Fight fight fight! X Merry Christmas X Rhian x
Good morning. I am platinum-resistant and now on a new drug called ELAHERE (mirvetuximab) . I was first tested with CARIS ( carislifesciences.com ). I was FOLR1 positive (75%) and then found out that I could benefit from mirvetuximab. It is a new drug, currently only available in the USA seeking regulatory approval in Europe. I live in Istanbul, Turkey; I'm ordering it from the USA with special permission from the Turkish Ministry of Health. My private insurance is covering it because it is FDA-approved. If you want more information, please let me know.
I can also suggest having an online meeting with a Turkish oncology professor from Istanbul. He is very knowledgeable, especially with targeted therapies, immunotherapy, etc. He has many patients from abroad. He suggested that I use ELAHERE instead of starting classic chemotherapy (doxil + carbo) right after my surgery. I was not sure, so I didn't listen to him and tried doxil+carbo+avastin and then gemcitabin + avastin; they didn't work, and now I am on ELAHERE. His website is mutludemiray.com/ .
Some patients are using vaccines from Cuba, and they have positive results. I don't have much information, but it may be worth a Google search.
I wish you all the best, and please, please, never lose your hope.
Hello, So sorry this is happening to you at Christmas. So, I am on my second recurrence but I have clear cell and endometrioid OC. Here's something I wrote about alternative remedies I was taking. 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. See Joe Tippens Protocol on FB.
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.
I had a 7mm lesion on my liver which doubled to 13mm in 90 days. Then I reordered what I had been taking. Another 90 days, new scan showed tumour had grown but only by 2mm. Might just be a coincidence but you can bet I am still taking them.
And also read about Ivermectin (horse dewormer) that has had some good results with clear cell. On that as well now, with Tudca to protect the liver.
I have been lucky in that I refused the only option hospital gave me. Another dangerous, four-hour+ op, probable stoma, and then 6 months carbo/caelyx.
Went to see re trial at Marsden, not suitable, but their letter recommended I have no treatment at moment. This strengthened my resolve and I have just had targeted radiotherapy instead.
What I'm saying is that when you're not given any other options, how can it hurt to try something alternative?
I simply cannot believe they want you to give up. Do not go gentle into that good night.
But also agree with what other ladies have said re Elahere, trials and so forth.
Can your husband do some research for you? It's a lot to take on by yourself.
Hi. I just want to second the suggestion of mirvetuxemab which is specifically for platinum resistant people. It has just been approved in Europe. You need a doctor familiar with it because it has ocular side effects that have to be managed. Also I assume you are on a blood thinner/anti-coagulent? If I were you I would go to to the top cancer hospital in your country or a neighboring one asap. I hope you can have some relief over the holidays.
I believe the Royal Marsden Hospital in London sees patients from overseas, but I think it would have to be on a private basis (you would have to pay the full cost yourself). Some good suggestions above, hope you get some answers from some of the people recommended. Meanwhile, forget cancer and have a wonderful Christmas.
Dear Bea- I’m so sorry you are going through this. I don’t know what your finances are, but if you can, please consider a consultation at Memorial Sloan-Kettering, or Anderson, or any of the top-notch hospitals in the US. They have access to the latest cutting edge meds, and also do many clinical trials. Has anyone concept of immunotherapy? I’ll be praying for.
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Carboplatin
My waterworks again!
any advice on what to do next? My mum has just been diagnosed with PPC and the doctors at our Hospital have already given up?! HELP?!
My recurrence, would welcome your experiences and suggestions.
