I am new to this site. Was diagnosed with OC in 2015. CA125 was 1265 and cancer staged at 4 which was later changed to 3C. Had chemo and optimal debulking op. At the end of my chemo CA 125 was 8. What a relieve, but it was short lived. I had a recurrence 11 months after finishing chemo. I have just finished 24 weeks of carbo platin and gemcitabine with 3 weekly avastin. Unfortunately CA125 is rising again and am looking at 3rd line chemo. Even though the chemo does not seem to effect me and make me sick and i have good quality of live I am starting to wonder if there is anything else out there that could work. Is there anyone out there that has used rife treatments or any other alternative treatments succesfully as clearly the chemo or the avastin is not really working for me.
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rijkje
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Sorry you have recurred so early. Cannibis oil didn't work for me though I slept well. But you have lots of legal alternatives and one of those or a combination, might work better (don't know where you are but it's illegal in the uk, same category as heroin though that can be prescribed, history and politics, not logic)
I know exactly where you're coming from. My special person who I support like you diagnosed in 2015 is on her 3rd line treatment she started out with chemo debulking avastin more chemo 6 month break and now on Carbo/Caelyx she's nearing the end of this treatment and her oncologist is looking at putting her on a PARP inhibitor as it's been found they work for everyone not just those who are BRACA positive xxx
Hi Rijkje, the advice given from Callmemum, is worth a try. It doesn't hurt to ask it might be just the ticket. If they say no start researching other chemo. Alternative treatments can work for some but not for all. The same as chemo it can work for some but not for everyone. It's all trial & error when it comes to finding the right treatment for you. Keep us up dated to how you get on take care Cindyxx
Hi and welcome to the site!
I've had 3 lines of chemo since 2015 plus same surgery as you. Also dx at Stage 4 with spread to liver and spleen.
1st line June 2015- Carbo/Taxol with Avastin, 2nd line Sept 216- Carboplatin, Cyclophosphamide and Avastin, but after 3 sessions Cyclo and Avastin discontinued as platelets, neutrophils and haemoglobin hit rock bottom, so only Carboplatin until December 2016. 3rd recurrence Feb 2017 and had Topotecan but it wasn't effective and CA125 rose again as disease had progressed. I'm now on Olaparib for the past 2 weeks as a BRCA mutant was identified after genetic testing, but it is not in the gene, only in the tumour so thankfully not hereditary. I will be assessed in a few weeks to see if Olaparib is successful. if not, my oncologist will look at other parp inhibitors like or give me a different type of chemo.
Have you been tested for BRCA? If not, chat to your oncologist about getting a test.
Hi Juliet, this is very interesting I have heard of others on here saying this. They are not BRCA positive but their tumour is. It's something for us all to look into. If our onc will give it a try to see if more cancer patients can benefit from this kind of testing.
I am BRCA negative but have lots of family members with this cancer & bc. So far we have all tested negative to the BRAC gene but not had our tumours tested. Thank you for your in sight into this. Take care Cindyxx
Yes, and although it is licensed for ladies in remission who are platinum sensitive, I was not in remission when prescribed this (nor am I at this moment!) and I am platinum resistant. But I know of at least one lady in the US who is also in the same situation as me and has just started Olaparib. The genetic testing that I had was not just for BRCA as I understand and it was done with a company called Oncologica in the UK.
I'm on it less than three weeks so I'm not really sure if the pains I'm having are due to cancer and ascites or side effects of Olaparib! But I have noticed in the last few days that pains have lessened so I'm hoping that Olaparib is kicking in and doing what it should be doing!
Yes i have been tested and that has come back negative. However i understand from your post that you might not BRCA positive on the gene but you could have it on the tumor?
Yes, that's correct. It's called somatic if in tumour and germline if in gene. I only discovered this terminology when the results came back and my oncologist explained - we live and learn!
Hi Juliet, yes this has help & hopefully helps others in this situation. I will be asking lots of questions at my next appointment.
I can't get into remission after having 31 chemo. I am on my third line & reading eveything that might be the ansewer. It feels at times I am back at collage taking in massive amounts of information & cramming it in my little brian. Instead of it helping me to get a better job it's to help me get better treatment to stay a live. Inwhich I can let others know like you are doing.
We could sit back & just let the doctors sort it all out but with cancer it's not that straight forward. When things don't look as if they are going as well as we thought then we have to look for the answer.
I am glad they are offering you a new drug. I wish you all the very best take care Cindyxx
Hi Juliet, yes the same here I never feel all my questions are answered & often leave feeling more confused. My list gets longer & longer but my satisfaction of getting the correct answers is getting less.
I will keep you all up dated with what's next for me. I hope this new drug is the answers for you & you can keep us up dated. Take care Cindyxx
A colleague of mine had started using one since December and having excellent results with it apparently. I am going to go and look at it this week, they are expensive but you can find second hand ones or maybe hire one or club together and do a share scheme! Xx
Nicky, you don,t have to buy the generators. If you go online and type in tone healing by Royal Rife you will get the information to send for the tones and frequencies for your particular healing. Costs me around £15 to send for from America and they want information like height and weight etc and the illness you have, then you get the Tones to download into the computer or MP player. Once you have bought it, you have it and don,t need to spend anymore. I listen to my tones on a loop of 10 minutes, three times a day. I was expecting some new age music Lol, and have no clue if you can tune in to heal your body through these tones, it may work or help, may not, but, it only cost me a tenner and it is strangely comforting, I really don,t like having a day without it now. I use mine for my inflamed liver. There are also samples online, or if you find someone who already has it for your illness, you can always just ask them to send you a copy. Badger. xx
Hi Badger, this sounds great will be looking into it soon.
It doesn't hurt to look into anything & everything but just have to be careful for cons.
When you have cancer all of a sudden there is so much out there that can cure cancer. I know somethings can help some people but some things are just money making cons.
I will let you know how I get on take care Cindyxx
I have spent slot of time researching and trying things. Please look at my on my profile as to what I have found that seems to be making a difference, at least for me. I am interested to read this post on rife machines as I understand some friends have just bought one with impressive success so far apparently? I will keep you posted x Nicky x
Hi nicky. Thank you for that promising feedback. Would love to hear how your colleague and friend are going with the rife treatments. I live on new zealand and a second hand one will not be easy to get. If it works I'm happy to spend the money. Could you give me a written list of your sipplements?
Hello love, You might like to have a look at L.D.N ( low dose naltrexone ) there have not yet been controlled trials for its use with O.C that I am aware of but the buzz is it is promising. Just google L.D.N Cancer, (especially the work of the late Dr Bihari ) . Welcome to this remarkable group of ladies and their supporters!. xx
Hi Rijkje, I am wondering what Rife is? When I first got on the cancer train I listen to wave sounds that change your DNA. I use to do it for hours but when the cancer kept coming back I stopped doing it.
Is that what Rife is? If so & it's working maybe I need to start looking at it again. I was meditating but I didn't feel it was working.
I will really look in to this. Thanks take care Cindyxx
Hi cindy. Rife is based on frequencies not sound. I am also meditating which has calmed the mind. It might not cure cancer but it's making me feel better. I found a website in new zealand where we live. Have a look it's rather intetesting. spooky.com
Hi Rijkje, thank you for that I will look this link up. I do suffer with depression & can get very anxious. Since having oc I am looking for anything that might help.
In the pasted I have read that wave sounds can mend DNA. I have tried all kinds of different methods to help me. I feel chemo is the only answer for me for now but if something comes up I will try it. Thanks again take care Cindyxx
I am at tge stage that I'll try everything. Looking down the barrel of third line treatment and it was only 2 months ago i finished my 2nd line treatment. That website us actually spooky2.com
Sorry to hear of your recurrence- I do not know if this will help - I am currently in treatment for the 3rd time, I am receiving Doxil and Avastin my oncologist told me with this treatment my CA125 will go up so heisnot focusung on the CA-125 but rather on the shrinkage of my tumors! I was diagnosed in 2012 with Ovarian Cancer Stage IIIC
The way it was explained to me is that Avastin creates new red blood cells which in turn can elevate your CA125 but that does not necessarily mean your cancer is worse - many things can elevate the CA125 besides cancer - infections, immune disorders, a cold etc. So our focus is on reducing and slowing the growth of these lousy tumors - I will keep you posted as to how it goes - this is my third round of treatment- and first time I have ever had Doxil and Avastin!
Hang in a little while longer if you can before stopping it and trying other natural treatments!
Unfortunately Avastin is not funded in New Zealand. The way it works is that you can have 11 treatments at a cost of $4500 NZ per treatment of which 2 are subsidised by Roche. After the 11th treatment all following treatments are free. However if you do have cancer progression the treatments will stop.
Currently my CA125 keeps going up since I finished 2nd line chemo in May. Oncologist wants a ct scan ASAP. Have you had avastin in an other combination at all? I would love to keep going with the avastin as I do not seem to have major side effects other then high blood pressure. Am also happy to have more chemo as I have NOT had any side effects what so ever from that either other then hairloss.
No clinical trial. The drug just isn't funded in New Zealand. Just how the system works unfortunately. Just lucky I can afford to pay for it. Do you get it 2 weekly?
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How long does it take Avastin to start working? What if it isn't working?
Avastin no longer working, next steps?
Avastin following taxol/carbo
Rising CA125
