Second opinion recommendations please

Hi Everyone,

I have become carbo resistant, during second line chemo. I am based in Scotland, but am interested in getting a second opinion re my next course of action. Can anyone recommend someone? I am very interested in complimentary therapies and am currently working with Dr Dana Flavin, an American doctor and scientist who lives and works in Germany. My own oncologist has suggested weekly Taxol as the next option, but I see some of you are on trials, plus I would be v interested in immunotherapy trials or options if there were any in the UK. Also, if anyone is working with off-label drugs with the COC in London I would love to hear how it is working for you. All suggestions gratefully received, as ever. x

20 Replies

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  • hello

    Which part of Scotland are you based?

  • Hi - I'm in Perthshire.

  • I don't have any advice regarding immunotherapy or alternative therapies etc. But professor Reed who is based at the Beatson in Glasgow is very highly regarded in gynae oncology.

  • Hello - I also live in Scotland and am considering the COC in London (have already made telephone contact). I've also come across Dr Dana Flavin's name in Sophie Sabbage's book The Cancer Whisperer. What advice are you getting from Germany?

    I'm being treated at the Western General in Edinburgh for first line recurrrence. I am meeting with my oncologist at the end of the month and will have a notepad full of questions about integrative approaches!

    I'm very interested in the replies you'll get from others on this forum - all directly of interest to me too. Thanks for your post.

    Caroline

  • Dr Flavin is very into integrative approaches along with conventional drugs. She particularly advises alkaline nutrition, detoxing, juicing plus lots of supplements and off-label drugs. I am also on something called DCA which she recommended, plus Low Dose Naltrexone, Metformin, Aspirin and a statin. She is also looking into anti-fungals and threadworm medication which is also supposed to help cancer.

    I would be interested in travelling to the Christie or the Royal Marsden in London as they seem to have the best reputations. What did they say at the COC? They are using a lot of the same drugs as Dr Flavin, but in quite different dosages as I understand.

    x

  • I too became carbo resistant during 2nd cycle and was interested in you having LDN as I am presently on no medication and recently heard about the drug. I realise it can only be on prescription and if not on NHS I am prepared to pay privately. Was it your onc doctor who prescribed? as I see my doctor in 2 wks time just hope he will agree. I have seen where its taken with cisplatin so I am hoping at least to get some answers as to whether it can be offered as I'm presently on no medication and it does seem to be a treatment worth trying. Thanks x

  • Sorry Gerty, i have just seen this. You can get LDN from Dicksons chemist in Rutherglen, Glasgow. They are the only UK supplier I think. They will put you in touch with a Dr who will write you a private prescription. It costs around £25 a month I think. Good luck.

  • Hi Hectoria

    Thanks for replying had a visit to hospital last week think they are running out of ideas for me my Dr had not heard of LDN and suggested going on tamoxifen but was put on that in 2003 for breast cancer and had bad reactions so was then put on arimidex which suited me for 5 years. He suggested I go on that with blood tests in meantime and will see me in 3 months time (along way off I feel) my ca125 has now shot to over 3,000. Decisions are hard to make as what's the best thing to do as I have bad problems with bowels for which I have had 2 stays in hospital which I am desperately trying to avoid. What a minefield it all is I'm as confused as ever but will look further now into LDN decisions decisions eh! not easy. Hope you are doing OK and wishing you luck in this lottery. xxx

  • I live in Ireland but I hear nothing but good things about The Christies. As for alternative I do believe in everything in moderation. I take a statin anyhow and the Daily express came out with an article that showed Statins cause irritation of the tummy and high blood sugars. So conflicting thoughts about it all

  • I used to work on the Express, so wouldn't really believe any of their stories on health tbh!! I know what you mean about everything in moderation - I am rattling with the amount of pills and supplements I am taking, and am slightly concerned it is too much. x

  • Yes because now in the paper a different one mind you today, there is another med coming on line to use with statin to prevent heart attacks. I take bp meds and the statin anyhow. On forsavance for Ostepenia and eventually started the Zantac for my tummy today. I blame the Fosovance to be honest, Fingers crossed Zantac will sort the tummy issue. I have vit b on standby and tumeric tabs but leaving them aside for the minute

  • Hi Hectoria,

    I am on the COC drugs and have been since August last year. I'm just waiting on results from a 6 month CT scan (finished chemo in September). CA125 has been as low as 4 and was 7 as the last check. I have to assume the drugs are helping, but I guess I'll know once I get the scan results on Thursday.

    My experience with the COC has been very positive. The Drs are all from the NHS originally and have moved into the private sector to be able to further their understanding of these drugs. I found the first appointment fascinating and learned so much, that I would have paid for it even if I didn't have cancer!

    Good luck with whatever you decide.

    Yosh x

  • Thanks Yosh. Are you on all of the drugs the COC recommend, or just some of them? My GP wouldn't give me the itraconozole for instance as she said it could interact with the statin - actually she didn't prescribe any of the drugs I am on, they are all coming from Germany. I am very interested in going to see the COC too as I would love to know what dosages they are recommending.

  • Yes, I'm on all their drugs: metformin, atorvastatin and then mebendazole and doxycycline on alternate months. My GP won't prescribe them to me, but she is supportive of me using the clinic.

  • If you are now platinum resistant you might be eligible for the immunotherapy trial I'm on, Javelin 200 ovarian. There's a location in Glasgow.

    You can find the details here to check if you might be eligible.

    clinicaltrials.gov/ct2/show...

    All the best with seeking a second opinion.

  • May I ask how you are getting on with this trial? How do you find the side effects, and do you think it is working well for you? Thanks for letting me know about this - I will ask my onc when I see her next week. x

  • I have no side effects (except for diarrhoea the very first night) but I'm on Arm A which is Avelumab only. I've had two scans so far and some of my tumours have disappeared, some have reduced in size and others are stable AND nothing new! My CA-125 reduced from 1880 at the start in early November to 82 (that was in late December, I've forgotten to ask recently). I'm due another scan in about six weeks as they are every eight weeks.

    I think I'm very lucky to be on this trial despite the two-and-a-half hour journey each way every two weeks and sometimes more frequently if there's an echocardiogram or scan due.

  • Well done-this sounds very encouraging.

  • Gosh, that sounds amazing!

  • I haven't gone down the complementary therapy route, yet, p but I am both resistant and allergic to the plains, after being on them 3 times I've had caelyx, which didn't work and I'm now on weekly taxol, which does seem to be working. I'm glad that Oxford are now looking at cannabis. I can't understand why opiates can be prescribed but not cannabis. Makes no sense at all.

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