Hi, ladies, hope you are all doing as well as can be.
Just wondering if there is anyone out there with a similar background to me. I don’t feel like I fit in with most OC patients as I didn’t have chemo (HGSOC stage 3B, BRCA1 +ve). After modified debulking surgery I declined adjuvant chemo and have hyperthermia every 3 months, high-dose Vit C infusions, Ozone therapy, Vit D, exercise daily and follow a mainly plant-based diet. I’m 2 years past diagnosis & thankfully still NED.
Wish you all a lovely evening ☀️
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Hailun
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I wish I'd had the courage to decline the adjuvant chemo as the cancer came back in 4 months anyway and I felt like I'd been through all the worse bits for no reason at all. Going bald (let's not call it hair loss), infections at PICC line, leading to three days in an EAU at a hospital rife with Covid, 42 further clexane injections, etc.
What exactly is hyperthermia and how is it delivered? Where do you go for your Vit C infusions?
I really struggle to trust my team simply because so many things have been missed in my care so far.
So glad that all this is working for you. It's great to hear a success story. xx
So sorry for your suffering. I sometimes feel that OC treatment is worse than the actual cancer. I won’t go into all of the reasons why I felt that chemo was the wrong option for me, that’s not going to help anyone who’s been through it, but I’m thankful that I had support from my husband. He was also totally scared when I said no to chemo but researched with me to find other options.
Hyperthermia is where the body (whole body hyperthermia ) or the tumor site (local/regional hyperthermia) is heated up gradually to a fever temperature (around 39 degrees or higher if it’s safe for the patient. Heat is cytotoxic and has been scientifically proven to make chemo and immune therapy work better with less side effects. You might have heard of HIPEC, where doctors heat chemo and deliver it directly to the abdomen and pelvis after debulking surgery.
I live in Germany, and there are 4 integrative clinics which offer hyperthermia paid for by the health insurance. They also check my bloods, tumor markers & offer other integrative cancer therapies. I’ve heard that it’s standard of care for all cancer patients in The Netherlands.
My GP gives me the ozone & Vit-C infusions. Those I have to pay for. I have no idea if you can get any of these in the UK. I’m actually from the UK and used to work in the NHS, but I’m so thankful that I got sick in Germany and have these options. They weren’t offered to me though, I had to find out about them and fight for what I needed.
It must be frustrating for you to not feel like you can trust your team. I get that. How can we automatically trust people we don’t know? We’re thrown into a world we don’t want to be in and told what to do. Doctors told me that there is nothing that I can do to help myself, I have to just accept the treatment they offer or I’ll die within 6 months. These doctors are not on my team anymore. I treated each consultation as an interview, and had 5 second opinions before I decided on the surgeon for my debulking procedure. He was fantastic and fixed a 40 cm hernia in addition to debulking, and all with a da Vinci robot. Was an easier recovery than the first open surgery.
I might be a pain of a patient, but it’s my body and I have to deal with the consequences, so I continue to ask questions, ask to see the evidence for what procedure is being offered. Sorry this post has gotten so long!
How are you doing now? I hope that you find the inner peace and strength that you need to get through this 💪🏼🙏🏼
I hope so Denise. I wish these methods would be studied more. I wish they were at least able to be combined with traditional therapies at low/no cost to all those willing to try them! The only side effects I’ve had with my holistic treatment (haven’t mentioned everything I’ve done) is some fatigue and occasionally a funny tummy. Should be that way for everyone xx
It would be great if more people were offered this option, not being as brave as yourself, I would still probably opt for both. I’d even pay for this if I could!
Definitely needs to be more research done on this, so much better for the body.
Gives us hope for the future, for sure!
All the very best to you or continuing good health!
Kudos to you for your bravery and insight when I was first diagnosed I didn't have a lot of knowledge about the journey chemo was a must I was NED 22 months have been in treatment for the last 16 months at present I'm off of everything as the immunotherapy Keytruda tanked my system still fighting a shingles outbreak 4 months later I started going to a natropath oncologist hypothermia, acupuncture with lymphatic drainage and just started mistletoe injections its really been eye opening but I have to admit at times conventional and alternative doctors have such different views example my CA125 is a good indicator for me recently it shot up my oncologist wants me to explore trials the natropath said it could be dead cells he said the CA125 should of been gone 20 years ago signatera is the new test I am going to an accredited cancer center this week to meet with their team I was totally surprised that they have a natropath on staff I'm at the point I will look at different treatments but also the side effects I will never go on another immunotherapy again I actually feel better being off everything at the moment although scary.
Thanks for your message Saintgermaine. I remember you replied to a question of mine about 2 years ago!
None of us are prepared for this. The fear of God is put into us if we don’t do everything the doctors say. I do appreciate their training, but they have learnt how to treat symptoms and not how to treat an individual. I educated myself, got a copy of every medical report, compared what they said to the latest evidence based research (unfortunately docs are not always up to date), and went often with my gut feeling.
Signatera is interesting. Are you based in the US? I had an RGCC Ongogene test after my 2nd surgery. My CTCs were compatible with stage 2 cancer. It tested also for how effective chemo and natural therapies, including mistletoe, hyperthermia and curcuma etc were on the tumor, which helped me to make some decisions re adjuvant therapy. I also did some mistletoe injections but couldn’t keep up with them for long as injecting myself was triggering the ptsd. Always something.
It’s great to hear that you are actually feeling better at the moment. I’m sure you’ll find the right way forward for you. If you’d like to share what happens at your new cancer centre I’d be interested to hear.
I remember now we did touch base I am based in the US I'm not familiar with the RGCC test I will have see if its in the states I'm still waiting for my Signatera results I totally understand the ptsd the needles are a bit long when I first saw them I was put back. As of now I'm on my second box and I have had no reaction so I'm being bumped up I feel the immunotherapy could of been affecting it seems promising
I am so glad I'm off of it but I read takes up to 4 months to get out of your system I had a rash pop up in December I saw my onc's assistant told me it was a friction rash from my pants it was shingles but by the time it was properly diagnosed the window of taking the anti-viral had passed however I did have the vaccine which helped it a bit it went into cellulitis I just finished 6 weeks of antibiotics today the dermatologist said the Keytruda was a factor in its healing I asked my onc for 3 months to take me off of it wouldn't do it its right in the side effects the natropath said my immune system was attacking itself.
As you know we must be our own advocate as we have the final say in treatments and I agree its like putting a band-aid on it not getting to the root cause.
I have much more knowledge now then when I was initially diagnosed I will let you know how my appointments go this week. It's a 5 or 6 hour visit with different specialists.
I also wish I had had the courage to investigate alternatives instead of jumping into chemo before and after debulking surgery. I was only NED for 8 months and have been on various chemo treatments and radiation since June 2023.
Can I ask you the names and locations of the integrative clinics you mentioned in Germany? Thank you very much and may you stay NED for ever!
Aw, thank you. Maybe you can investigate them now. They might at least support you through your current treatment. I hope you find a good way forward.
I go to the BioMed Klinik in Bad Bergzabern for Hyperthermia, and I went to Heilpraxis Linek in Gifhorn for the Ozone and Dunklefeld at the beginning of my cancer journey. I go there now only once a year for Dunklefeld. My GP now gives me the Ozone and Vit C infusions. Several GPs and naturopaths offer the latter.
There are loads of private clinics who offer hyperthermia, even combined with low dose chemo which seem to have good results. But there are only 4 throughout Germany who work with the health insurance.
I don’t know if it helps, but when I was considering chemo, I negotiated with the oncologist to try Carboplatin only, with an AUC of 3 instead of 5. I heard that Carboplatin delivers 90% of the kick with 10% of the side effects and Taxol 10% of the success with 90% of the side effects… I also learnt that chemo kills the cells which are dividing at the time of the infusion, but doesn’t kill cancer stem cells. So even when we do chemo, I feel that we need to do something else to boost the immune system into recognizing these stem cells and killing them off!
Hi Hailun! Thanks for sharing your story, it offers me hope!!! I was NED for 22months. Had a negative Signatera test and normal ca-125 but have a biopsy confirmed recurrence. I’m now on carbo and doxil but am working with an integrative practitioner in addition to my reg onc. I did the RGCC test as well! I’ve started supplements and I’m getting my first iv vitamin c tomorrow. I’d love to compare notes if you’d be willing to touch base?
Sorry for my late reply. My child and I came down with a hammer of a virus. It’s getting better now.
How was your first Vit-C? I assume you have to ensure enough time before/after chemo infusions…? Which supplements are you testing out? Sorry that you have a reoccurrence; I hope that you have a good support system around you. You got this!
Nice to hear someone else has tried RGCC. I looked at their SOT therapy but wasn’t sure about it, as I was NED by the time I found it and wasn’t sure about a therapy based on mRNA. Officially my CA-125 was back to normal, but the RGCC test found CTCs equivalent to stage 2. Could have been shedding from the tumor though. As long as it keeps moving through the body and doesn’t find a place to hide and form another tumor, hey? 😊 Did you find the test helpful?
We don’t have signatera over here. Wish you lots of success in getting back to NED! 🙏🏼
I’ve only ever had local/regional hyperthermia. There’s always a lack of staff to run the machines which means that there’s never been a chance for me to have full body - If I went private to a different centre I’d be able to have full body though. When I asked the integrative oncologist, he said that for OC, local/regional is absolutely necessary, but when there is capacity I would also benefit from one full body treatment (I have 5 x local over the space of 10 days, every other day with other treatments on the non-hyperthermia days such as magnet field and andullation).
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You all give me hope!
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Love to you all .... And keep fighting
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