2 Questions please Desensitisation for reaction to Carboplatin and anyone use Care Oncology Centre in London

[Lizzieanne]

I had OC 18 years ago and now have first recurrence. They are using same regime and was really unwell second treatment, third treatment yesterday as soon as the carboplatin was started I had a really bad reaction and it was stopped immediately, it was all explained to me why this hapens and they are going to discuss giving me two sessions, one for Taxol and then following day carboplatin after the desensitisation tablets. Has anyone else had this happen and would be pleased to hear your experience, and any information about the desensitation tablets. Apprently the carboplatin session I will be at Unit for 10 hours. My second question is has anyone use the Care Oncology Centre in London to help with supplements as just looking at Jane McLelland's facebook page it seems quite a few people struggle with assessing which supplements/drugs to use. Thank you.

[soyoon]

I am so sorry to hear that you have to deal with recurrence after such a long time. I also developed allergy to Carboplatin in my treatment for recurrent OC. Due to allergy, Carboplatin was delivered over a 8 hr period by diluting its concentration 3 to 4 times by increasing the overall volume given. I was also given drugs to alleviate the allergy at the same time, but I don't recall their names unfortunately. My allergic reactions were breathing and heartburn symptoms.

[Lizzieanne in reply to soyoon]

Thank you think this will be my new routine. Did your body cope with this regime please

[soyoon in reply to Lizzieanne]

Yes, the allergy went away once the infusion ended with the help with the allergy med.

[Lizzieanne in reply to soyoon]

That's good to know. Thank you

[bluepeterella]

I am under Care Oncology Clinic, have been with them since December 2018. I wish I had gone sooner because I was already starting my first recurrence and had chemo finishing August 2019. Since then I have been in remission which I feel really happy with.

Jane’s metro map and protocol can be quite tricky to follow at first but there are a few Facebook groups with loads of info and helpful hints. It’s not too bad once you get all the drugs sorted and get into a daily routine of taking them.

[Lizzieanne in reply to bluepeterella]

Thank you I shall be in touch with them. Wishing you continued remission and good health

[EAR1957]

I have been on the Care Oncology Protocol for three months. I’ve had few side effects and no recurrence of a rare, aggressive cancer. Therefore I recommend Care Oncology.

The supplements can be complicated to work out. For the supplements it’s helpful to find an integrative oncologist or functional medicine specialist who is familiar with the Care Oncology Protocol and will work with you to be sure the supplements work with (and not against) the drugs from Care Oncology. Good luck!

I hope I can go eighteen years without a recurrence— I’ll be 81 at that point. Good for you!!!

Also it looks like we have the same two given names. Are you also an Elizabeth Ann?

[Lizzieanne in reply to EAR1957]

Thank you for reply. I am Elizabeth annette. I am 75 now and know i have been very !ucky but of course i want more. I shall get in touch with COC. Hope you have a long remission. I have never taken it for granted tho it isnt so forefront in your mind everyday you acknowledge what has happened to you. It would be so good to know why some of us have long remissions with same stage and living as healthier life as poss but also having odd treats and others dont. Wish you a very positive future aim for that 81.

[Lizzieanne in reply to EAR1957]

May I ask if you are still on the Care Oncology regime. Have just finished another round of chemo and really dont want to do this again. You kindly answered my first post. Dont feel under obligation to reply.

[SandyL]

Hello Elizabeth, so sorry to hear of your recurrence and hope you can get your treatment sorted out so you can beat the OC once again, as you did 18 years ago. Like you, I also had a lucky break by being diagnosed with Stage 4 OvCa along with massive pulmonary embolisms, then having 3 chemo's (Carb and Taxol), surgery then another6 chemo's after that, which produced remission for me, for 21 years, so far. I do other things for myself (I use a zapper and follow the Dr Johanna Budwig regime) and walk 4 miles every day. I feel great but my Ca 125 suddenly jumped to 18, after being around 2-13 for most of the 'remission' numbers over the years.

I'd been getting a wee bit sloppy with the flax-oil, so I upped the amount I have with Breakfast by one tablespoon, the was happy to see the Ca 125 was now at 13 (for the next Ca 125). I continued for another 3 months and my last Ca 125 was down to 8, which is a good number for me (I think).

The only thing is, although my Ca 1125 has definitely dropped and I do feel great in every way, my stomach seems bloated, but not constipated, so I'm hanging in there and waiting to see if the next Ca 125 has dropped or not. I feel as if something is going on, but I'm not sure what exactly. Time will tell.

BTW, I also had problems with the Carbo infusion all those years ago and it was simply administered over 4-6 hours and all was good after that. My initial CA 125 at diagnosis was 9800 and ended up at 17.2 after finishing treatment, so it has always been a good marker for me. Anyway, I just thought I'd share my thoughts with you and hope that we both end up with a great response to whatever is going on here. Take care and keep your positive thoughts to the top

[Lizzieanne]

That is amazing. I have the milled flax seeds on porridge and use oil to pour over salad, and mix with organic cottage cheese. My CA125 has never gone over 28 and after treatment between 2 and 7 but is still a marker as it went up to 28. Like you I was lax taking this I also took selenium but stopped taking this so am getting back on track. Thank you for your positive post and reassurance about carboplatin. Will look up the zapper

[Cobweb2 in reply to Lizzieanne]

Hi I know this is an oldish post but I was very interested to read about you taking flax oil! I had heard how good it is, can I I ask how you take it and how much a day etc? Many thanks

[Lizzieanne in reply to Cobweb2]

thelinseedfarm.co.uk/recipe.... I read about it when diagnosed in 2002 quite a bit in internet but nothing proven but I also got a taste for it. Read something about chickens and experiments with flaxseed as I think theycan get OC and it mimics us. Cannot swear this info is right but you will find quite a bit on internet. I buy organic flaxseed oil from most supermarkets. If nothing else it might give us a glossy coat x

[Terrileeloughlin]

Hi, what ovarian cancer do you have?

[Lizzieanne in reply to Terrileeloughlin]

High grade serous