My Ovacome
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Some other infusion ideas

Hi everyone,

I have been on weekly Taxol and Avastin, but unfortunately have had bowel inflammation which meant I could never have it weekly and they are now probably going to stop it. I am really disappointed as it looks as if I now cannot tolerate Taxol and I am also carbon resistant. However, I have been talking to some oncology Professors in Germany, and they have a couple of alternatives to chemo which I am seriously considering. They both have a few ovarian success stories, and while they are not offering a cure, they have seen results on a par with chemo and with far fewer side effects and organ damage. The infusions are Taurolidene, which is an antiseptic. The other treatment is a combination of Fluconazole, an anti-fungal,and Apirin plus something else. The IVs are daily over a 3 or 4 week period. I have looked online, and there are a couple of published trials which I thought was interesting. Anyway, I've been researching this for a wee while and thought I would share it with you in case any of you are looking for something outside the box. Feel free to DM me if you want the contact details of the Profs.

S x

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Hi Hectoria, I'm at an early stage of treatment but interested in anything that's evidence based. Can you link me to the research you mention?

Mary

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Hi Mary, I'm afraid I'm not computer-literate enough for that, but if you do a search on Taurolidine and Diflu along with the word cancer, you should find some pubmed articles. The two professors I am talking to seem pretty eminent, but of course the treatment comes at a cost. You can do it yourself at home if you have a nurse or doctor to do the infusions, but I'm too much of a crapper for that! I thought I might go to Germany for the first week or two to make sure there are no complications, then do it myself at home after that. You need a picc line or a portacath.

S x

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I don't know about any of these treatments but I am a German speaker and if I can help in any way with correspondence or anything then please let me know.

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Hi Hectoria, I am wondering what your own onc thought of the idea?

I will look into it because futher down the line when there is nothing left to try this might be the answer.

My only concern I have is the, do it your self approach. How safe would that be? When I have chemo there is a team of nurses & doctors. If you have an reaction to the treatment who would be able to help you if you are doing it at home?

If you decide to do this please keep us up dated take care Cindyxx

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That's very kind, thank you. One speaks excellent English, but the other doesn't so I might take you up on your offer. X

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Just message me if I can helpxx

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Hi Cindy, yes, these are my concerns as well, especially as I have had one or two reactions to chemo in the past. I am seeing my oncologist team tomorrow, and I am just going to ask them if I can have the infusions at my usual outpatient clinic. I expect they will be horrified and say no, but I will be paying for the drugs myself and from a safety point of view it makes perfect sense. If they refuse, I have a friend who is a nurse and she is happy to do the IVs. Any reactions I have had were quickly treated with Antihistamine and a hydrocortisone, so I will try to get some of that. I have read that there is very little toxicity, but of course you can never tell. I have had a horrible reaction to Taxol this time around, yet it never bothered me before.

My choice would be to have all the treatment in Germany in the clinics, but it is just too expensive for me to go for the full 3 or 4 weeks.

S x

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Hi Hectoria, it's sounds as if you know what you are doing. I am a what if person but the fact you have nurse that can help you then all I can say is good luck.

I will keep my fingers cross they can give you the treatment at your usual outpatients unit. This is very interesting & would like to know how you get on take care Cindyxx

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yes indeed do take care-I seem to be having a hasty reaction in my vein after an infusion of just sodium bicarbonats which apparently can seep into the surrounding tissue. I am interested in your post as had a recurrance within a few weeks of carbo/taxyl so neither is any good for me. Going to see a specialist in London on Thursday and will ask about angiogenics and immunotherapy and see if there are any trials coming up.

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Hi Cindy, I am seeing my team this afternoon ( first time I have ever seen a 'team' )' so am a bit worried about what they are going to tell me actually.

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I too keep having reactions to chemo, not the desired ones, like do the job that was intended. I need to search out other ways of stopping the advances of the cancer. I admire you gals for the all the research you do, I don't know where to start. I need some tutoring. HELP! Talk to me. Point me in the right direction. Thanks Blessings Eileen

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