Hi there everyone. I hope you are all coping with this miserable weather.
I have a question. After an emergency admission just before Christmas with a horrible amount of pain in my right side, I was given a ct scan. This was 6 weeks after my previous one. My tumours had all grown but there were 2 new areas of growth. There is a 5 cm tumour between the vaginal vault and the rectum. There is also new growth of "at least 3cm between the portal vein and the ivc"
Has anyone else had this diagnosis. It sounds really serious to me and I really do feel very weak and in pain.
I have an onc appointment on Thursday and am due for chemo on Friday but this was all arranged before my admission.
I spoke to my csn who said that the onc had seen my scan and that nothing needed to be done before my appointment. I'm just worried now and fear that this may be the beginning of the end.
Can anyone offer me some wise words please?
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I don’t know enough to advise but I know we have a good team & they will do their best for you! Please let me know how you get on & know that I’m thinking of you & rooting for you xoxo
I’m so sorry to hear this Sian. I’m so sorry you’re in pain too.
Are you interested in looking at some of the alternative approaches which I found out yesterday are having clinical trials ?
The Care Oncology Clinic protocol (you can contact them privately anc I believe it’s about £1,000 a year including the meds) is the same as Jane McLellands How to Starve Cancer book and my onc prescribes most of the protocol and I get the rest myself.
Also look up Joe Tippens and his fenbendazole which cannot shrunk tumours it seems by stopping the microtubules spreading. I’m taking it as a preventative.
It’s so worth reading the book and seeing if you can get the drugs and supplements which seem to be effective for some people.
There are Facebook groups for these which are helpful too ( although a few space cadets who suggest things that I can’t find any real science behind).
The Care Oncology Clinic charges £400 for initial consultation, then the cost of drugs afterwards every 3 months - I haven't had a bill yet for my 4 drugs from them, but I'm given to understand it'll be around £100 every three months. Except one of the drugs, I can get from my doctor cos its just a statin, so I won't be paying for that one. Note that one of the drugs is mebendazole, which is the human version of febendazole - both should not be taken, its one or the other.
Unimpressively, the COC cannot find my consent form I signed whilst there, which explains why I haven't been sent a prescription, so I've not started yet. I had to print it off today, sign and will have to send back to them... To be honest, I wasn't that bothered, been on erythromycin for 3 weeks for a chest infection, so wasn't sure I should mix with all their drugs anyway. Starting an NHS doxycycline prescription tomorrow because the chest infection hasn't cleared, so at least I'll find out whether I'm allergic to it or not (already am allergic to 5 other antibiotics) and be able to work out what I might be reacting to when I start their protocol! I can't say I'm looking forward to taking metformin or a statin, but will give it a go... Will probably use fenbendazole instead of what they want to give me (mebendazole) - its much cheaper, and yes, its a cat and dog wormer, but not unsuitable for humans, loads of people are taking it. Just hoping to slow things down even more really, and should I decide to try chemo, this regime should make it more effective. I did learn from the doctor I saw at COC that loratadine also has a minor anti cancer effect, so I might add that in - difficult for me, I hate taking any drug unless its unavoidable! Might be worth your while to try COC.
It sounds ever so complicated. It must take a bit of getting your head around!!! Wishing you all the very best for the treatment. Let us know how you get on xxxx
A Happy NewYear to you. Let's hope it's a good happy and more importantly healthy one! Alex, I nearly messaged you here last night re. Jane McClelland's book. I am really interested in her Metro Map and following the same for myself. I am low grade though and I don't know if I should follow the Map for high grade - there are 2/3 maps for high grade on her site. Alex you say your onc prescribes the protocol for you. Can I ask which hospital you are under - I am at the Christie. I have a review appointment this Thursday and feel somewhat apprehensive abt mentioning it to them as I don't want a negative response from them. Feelint vulnerable! Gwen Xx
I have managed to get my onc and GP to prescribe the metformin and statin because they can hang it on the fact that I’m overweight and my cholesterol is marginally high.
My GP is more open to this than the onc is allowed to be.
I’m in Swindon.
I believe I can get the doxycycline if I pretend to have malaria ( over the counter with no prescription) but I’ve left that out for now as I’m getting used to taking the other drugs and supplements.
My onc is concerned that there may be side effects from the interaction of the drugs so I’m not going at it too hard as the Letrozole side effects have been a bit wearing. I found that the berberine and Metformin helped my digestion though!
I couldn’t find a low grade map so I looked what I could up on PubMed then realised the COC protocol was just the 4 basic drugs and I added low dose aspirin and some of the supplements, I do hope this helps. I found out a couple of days ago that they are doing clinical trials on the COC protocol and most of the other supplements and drugs have been or are being trialled somewhere.
I’m tempted to ask my onc if he’d do it himself if he had this disease. He persuaded me to do the chemo and I don’t really see that my chucking everything I can at it is any different.
I do wish you luck. Happy to answer any questions even though I’m no expert! I do know Jane Waygood who runs the alternative OC Facebook page has Prof Gourley as her onc! He’s the one that’s done the Trametinib research for low grade.
Apparently he is much like my onc in that they know what we are doing but have to remain scientific . But this does seem to work for a lot of people. I went in with the book and was very conciliatory in my approach assuming he’d been bombarded with it by other patients (although he hadn’t by many). I’m sure more and more are getting on the case though.
Hi again Alex, Yes, with the COC protocol being just 4 main drugs - being rational whatever your cancer type, these are the drugs you'll get. Then just build around them. If I decide to bring it up with my onc/dr. at the Christie I will ask whether he would take the COC drugs himself!!! I bet they would if their options were becoming more limited or having none at all! Alex, I am on Tamoxifen - do you think they'd refuse to prescribe it for me if I said I was going with the COC protocol?
I really don’t know but I think I’ve seen that chemo is sometimes enhanced by some of these drugs.
I know we are often told to stop taking anything during chemo but for hormone blockers I don’t think I’ve seen that people have been stopped from taking it.
Mine hasn’t stopped my Letrozole and I think there would be an outcry if another pathway was not able to be blocked which is what this is.
My best guess is that if there was knowledge that there was a real contraindication between the drugs then there would be a legitimate reason to not prescribe it.
Thanks for your opinion on repurposed drugs, etc. and the medics. Alex, another question - When you were investigating low grade and Pub Med etc. were you able to find out what abnormal cell signalling there is for LG? And/or what your opinion is on relevant abnormal cell signalling? Thanks for putting up with me and my questions! Gwen Xx
No problem! I didn’t find that out and have no idea how to. I asked both my oncologist and my GP and they had no idea either! I managed to get genetic test for BRCA which was negative so I’m completely flummoxed I’m afraid. It seem it is only the US that does this stuff or privately I expect you can get it done here but you’d need a lot of money. Some I think (like my onc thinks) is just a waste of money but I would really like to see them have a working knowledge of the process so we could have the option if we wanted.
Not much help I’m afraid! Maybe if things wake up again they may test further as I suppose at this stage for me it could be too early if it decides not to return. All a cost benefit analysis exercise!
Hi Alex, Thanks for your reply. I go onto Jane McClelland's site for repurposed drugs and a low grade site so I will pose the question re.abnormal cell signalling and see what comes back. If anything positive comes back will let you know.
Can I just ask - you seem to be saying you're taking both metformin AND berberine - COC told me just take metformin? Can you take them both together without any problems then?
The other thing is, I;m very confused by Jane's book, having trouble picking out relevant information for me, so not sure what to be taking alongside the COC protocol - I can't take aspirin cos I'm on blood thinners, but not sure what other things I can take with it. What else have you added in (I'm not low grade, I'm high grade epithelial serous...)?
I take both because if you look at the metro map they block two different pathways but I only take 100mg of berberine and I take it at least 4 hours later than metformin.
Yes it is confusing for me too. I keep in touch with the Facebook page and get most of my info from the helpful people on there who also contribute as does Jane herself.
I’ve added turmeric, green tea (not extract but drinking two cups a day), earl grey (bergamot), powdered ginger (1tsp), a probiotic, omega 3 oil. Glucosamine, calcium with vit D. And fenbendazole instead of menbendazole. ( I think that’s it)!
Thank you so much for that extra info. I drink gallons of Earl Grey all day, have done for years (wonder if that's why my cancer's progressing so slowly when its supposed to be aggressive!), but probably need to swop out a couple of mugs for green instead... can I ask which Facebook group/page - there are two I believe?
Fenben instead of mebendazole is certainly cheaper so I'm gonna stick to that myself... you doing 3 days on, 4 days off with that, or every day? Is the glucosamine part of a cancer protocol, or for another reason can I ask? And no CBD/cannabis oil?
I do (when I remember) have a couple of drips of non THC cannabis oil, and glucosamine is recommended late on in January book. Yes to the 3 days on 4 days off 10’weeks on 10 weeks off for fenbendazole.
I’ve joined both FB groups and the alternative OC one as well as the fenbendazole one.
I wouldn’t be at all surprised about the Earl Grey!
No wise words I’m afraid but I’m very sorry to hear this. This is such a hard disease to live with. We can breeze along feeling fine for months then bam! everything all worry and fear again.
I am also at the oncologist on Thursday to hear my latest news, so I will be thinking of you then. I hope they have a satisfactory plan lined up for you. All the best x
Hi there. Thank you for replying to me. Yes I agree with you that this illness is so hard. This sneaky disease is so unpredictable and just keeps moving to new places.
I wish you all the very best for your appointment on Thursday. Let me know how you get on xxx
Hi Sian. Obviously I can’t predict how serious this is but it seems like it should be manageable with some kind of chemo or a clinical trial. Please don’t think the worst at this point. It’s 2 more damn tumors. Hopefully your consultant will have a plan. If not, get a second opinion. I’m sending positive vibes. Xoxo
Thank you Delia for your kind words. I trust my team and they have always been very straight with me, which like. I hope that this latest development isn't going to reduce my options xxx
Sorry to know this. I have survived OC for almost 8 years. I kept having more tumors in new areas over the years and got rid of them each in a different way (chemo, surgery, low dose chemo, lynparza). Now I have a new growth in the presacral area and the doctor is considering radiotherapy since it is contained. (The tumor). I start radio in a week time.
Ask your doctor if this is an option?
This disease is unpredictable and stubborn! we have to keep up with a positive outlook.
Thank you so much Nouna. I hadn't even considered radiotherapy. That could be an option. I'll ask. Your 8 year experience of this ghastly disease is very impressive xxx
I am so sorry to hear that you are in pain, can your team not help? Fingers crossed they have a plan in place and you will receive treatment soon that will shrink the tumours back and leave you feeling much better. I know it is hard but try to remain positive this is not the beginning of the end, simply a little bump in the road to recovery. Good Luck x
Thank you Lyn. Yes I can visualise this cancer as a series of sleeping policemen in the road to be approached with care. I will take them slowly but surely!! Sending you lots of love xxxx
I’m in a similar boat with Timor’s in same area. I’ve been on and off chemo (mostly on) for 3 1/2 years. Recently I had some success with shrinkage with a repeat of Caelyx and Carboplatin - including desensitisation at every infusion. Now also on Avastin. No miracles but I hope to reassure u that they will keep trying🙏. Where r u located? Wishing u all the best. 😘
Hi there Joy. Thank you for your reply. I'm sorry that you have been having more problems with tumours. I am based in Cheltenham. I unfortunately had to stop both Caelyx and avastin at my oncologist's advice as I reacted badly to them. Niraparib and Letrozole also didn't work for me. I just fear that my options are running out. Sending you lots of love xxxx
Good Morning Sian, your news today must be so worrying but no it’s not the beginning of the end it’s surely the beginning of more treatment. You’re still very young and strong there must be many options out there for you. I had a similar diagnosis to you in August when I had to go to A&E in great pain in my right upper abdomen which proved to be 12cm 6cm and 3cm tumours. I was terrified and thought, like you, it was the end until the onc suggested 6 months Carbo/Caelyx. CT scan after 3 months showed a 50% shrinkage. I’m due for a second CT scan early February. Surgery has been ruled out but Niraparib has been mentioned. I’m telling you all this to give you a little hope and piece of mind. I’m much, much older than you so there must be more options out there for a younger lady like you.
My thoughts are very much with you and I wish you all the best.
Thank you Angela. I'm glad that you have been able to have some really effective treatment and that things have not been as scary as they first appeared. Let's hope that this is the case for me too. Sending you lots of love xxxx
Not the news you wanted (or us for you Sian). I probably worry more than most and constantly ask my oncologist what happens if this treatment stops working or doesn't work (it has happened to me) and he says there is always something else. I became refractory to platinum and then went on a trial that did not work and landed in the hospital for a week with a partial bowel blockage. Thought they had tried them all but now on Taxol (first cycle my ca125 was halved) and just last week they added Avastin. I had been fighting (am still I guess) my second relapse since last April without being able to stop progression. Now it is. I would wait for your appointment (written questions in hand) then consider a second opinion if not pleased with what is suggested next. Wishing you luck, my friend. oxoxoxo Judy
Thank you so much Judy. I'm sorry that so many of your treatments have not been effective either but glad that you are tolerating the new regime. I will take a written list of questions with me on Thursday and hope that they can offer me a way forward. Sending lots of love xxxx
So sorry to hear you’re in pain and what a lot of worry for you. Hoping that your oncologist finds some more treatment for you that gives you some confidence to move forward with. . It amazes me how many ladies on this site have had reoccurrences that sound hopeless but then a further treatment/trial is found for them to keep them going. I’ll be thinking of you with fingers crossed and please let us know how you get on.
Sian so sorry to hear this news, I had a recurrence the tumour was in the vaginal vault attached to urethras, I had the upper vagina removed and part of the urethra then went on to have Cisplatin/ Taxol. I am sorry I can’t answer to any other protocols.
Thank you Ann. Yes I'll pull them up high and face the music whatever is playing!! We can dance in our big pants together. Sending you lots of love and best wishes for your treatment xxxxx
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Earwigo
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