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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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...
They claim I cannot use Avastin because my bowels are filled with air and could get perforated and I would be too weak to take side effects of Elahere. Is also not yet approved in the Netherlands so they can’t (or don’t want to ?) test whether I could be eligible for it. Do you know where it could be tested independently ?
Seems there is not really right trial for me in Germany
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.
it is called mirvetuximab, you need to do some test, it is com of parp and chemo drug. Has been widely used in lung cancer area. It is called “magic bullet”.
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
Thank you so much for encouraging message 😘❤️🙏 my oncologist suggests I am so weak I would not be able to handle the side effects. He is really closing doors for me I am indeed trying to reach out outside the Netherlands to see what they think. But is very disappointing they that the are not willing to help further 💔
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.
Thank you so much for the advices, I already reached out to the Turkish contact. Can I ask you how are you managing side effects of Elahere if any and how was your physical condition when you started with it ?
You’re welcome. I hope everything works out well. If you come to visit him in İstanbul please let me know 🤗
Regarding Elahere; it doesn’t knock out as other chemo drugs. Its major side effect is blurred vision. As stated it starts one week after the second cycle. I’m using couple of eye drops. It is like a roller coaster. Get worse, gets better. Usually worse in second week, gradually getting better until the next infusion. But i got use to it. I don’t see it as a big problem. Eye glasses doesn’t work because the severity changes from day to day. I am carrying a magnifier in my bag just in case 😊.
I used neulastim during my classic chemo regimen and with Elahere at the beginning. I didn’t use it last time and now I understand that the side effects that i experienced such as fatigue, pain in my joints and kidneys are due to neulastim. I didn’t have any pain with Elahere on my last injection.
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.
Thank you so much for your advices, I am also looking at alternative options. Encouraging to see that those alternatives seemed to work. It feels so difficult to make right choices in my situation. Didn’t you have any side effects from febendazole? Did you go for specific melatonin?
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.
Thank you for your advice, we are indeed looking at all alternative. My oncologist claims the new medicine would be too harsh on me as my physical condition is not great main issue is not available in the Netherlands so I need to search where I could get access to it
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.
Hope you had lovely Christmas ! Thank you for the tip of hospital, I have reached out to them so hope for consultation after holidays. Everything is slowed down ofcourse now. Timing is not the best.
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.
They do. I had also received an online consultation from Memorial Sloak Kettering mskcc.org/appointments/inte... . Select the online consultation part.
I am also in online contact with Prof. Jonathan Ledermann from UK. Here is his contact info: Lynda Fletcher
I am also keen to access a consultation at a hospital in US. I know from your posts that you also have clear cell I am curious if you dont mind sharing which centre in the US you have been treated at? i am wondering which centres have particular clear cell experience/expertise
Memorial Sloan Kettering in NYC. To me, they’re the Best. I consider that they saved my life in 2008 when they removed a large ovarian tumor and gave me a total abdominal hysterectomy. Yes, I had a recurrence in 2014 and again in 2019 and I’ve been on maintenance drugs, but hey, I am still here. I wish you the best with your consultation. Hugs
Also, do you have ‘How to starve cancer’ book by Jane McLeland? Jane healed herself from stage 4 ovarian cancer and in her book she explains how she did it. She used many repurposed drugs and that is what I am doing too. I’m stage 4 breast cancer and my cancer has gone to sleep after following Jane’s protocol. There is also a fantastic website called canceractive.com that supports alternative therapies for cancer including those that Jane used. Also, there is a wonderful Facebook group ran by a very knowledgeable lady called Linda Sinclair who helps people with their cancer healing protocols and she does it in collaboration with Dr McKinney - the author of Naturopathic Oncology book; this book is also an incredible 600 pages resource for every cancer type. I was diagnosed in 2021 but doing very well, I don’t feel ill and I am not in any pain, it’s quite unreal.
will be interested in the replies…for now keep searching and. Like the rest of us, live each day to the fullest🙏
Hi, Did you read my message - in Chat? Re your oncologist advising against chemo. I don't think they would do this unless they were sure it was not going to help or not going to help enough to risk the side effects. Sorry - that was a bad sentence. I hope you are getting somewhere option-wise. Hugs xx
Ok. I tried copying some of the drug repurposing article and sent in Chat. I'm so worried about you. As I say, it's awful having to go through this without proper help. I wonder if Ovacome could suggest any helplines in the Netherlands. I find I always get a lot of support and info from the Macmillan phone line. xx
Dear Bea I am in a similar position in that i have just had 3 Caelyx for an extensive recurrence I did not tolerate the Carboplatin. I do not feel within myself that it has helped as i still have the pre existing nausea and now have some fleeting crampy pains too. I will know more with scan results next week. I understand weekly Taxol might be something that would then be offered very much like you have just had.
It is possible to have a video consultation with an Oncologist in the Marsden and i would imagine the other large centres in UK.
I would be interested in trying to access a clinical trial here in the UK Unfortunately i have clear cell ovarian and there does not seem to be a lot of trials ongoing. Another option i would like to explore is a consultation in US. I would be keen to see if it is possible to access any of the immunotherapy drugs.
I can empathise with you The researching and trying to find options is very challenging at a time when you are feeling very unwell. Hoping both of us find an option xx
Thank you for your post. I'm sorry to read you are having such a worrying time. I searched for local organisations on the World Ovarian Cancer Coalition website and there were two results for the Netherlands. You can view the details here: partners.worldovariancancer...
I hope they are able to provide you with support and advice, as well as information about services available for you in the Netherlands.
I'm not sure how integrated/alternative approaches are regulated in the Netherlands, but if you follow those approaches it is really important to get medical advice too and ensure your doctors are aware of any treatments you are taking.
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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.
