On Jun 12, I posted on this board for the first time about my wife's excellent progress with Paclitaxel/Carboplatin/Avastin & Curcumin. Well, I thought you'd appreciate an update...
She is now apparently disease-free and is in hospital recovering after the reversal of a defunctioning loop ileostomy... no more bags! Hopefully the central line will come out soon, after which she'll be completely back to normal.
...then we go back to the waiting game (which we already know all about as she is already a breast cancer survivor of twelve years) - long may it last!
I wish you all the best life can bring you whatever your involvement with OC is at the moment.
Plum
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Thanks. I do also take curcumin myself - it seems a bit of a miracle spice - I watched my dad die of dementia a few years back and don't want that to happen to me! It seems that, as well as its anti-cancer properties, curcumin also has neuro-protective effects: ncbi.nlm.nih.gov/pmc/articl...
The missus seems to be recovering quickly from the latest op... I hope she'll be home early next week
Dear Plum - I love a bit of good news - and it does seem your wife has done very well indeed. I'm sending my very best wishes for a very long life ahead.
I'm interested in alternative medicines and wonder if you could recommend a website or somewhere I could read about Curcumin. I found some fresh Turmeric in Morrisons but it was tiny bits which were just about impossible to peel and It stained terribly. Any advice would be much appreciated.
The version we both take is lef.org/Vitamins-Supplement... - I trust the Life Extension Foundation because they always reference peer-reviewed research papers backing up their claims. You can get this via the UK Amazon site (though it's not cheap). I think you'd have to consume an implausibe amount of tumeric to get the same effect as one of these capsules
While I appreciate that Plum is genuine about his trust in this organisation...I would urge you to excercise caution as there has been a lot of controversy about this..it is an Internet company only...I would also like to quote their disclaimer
"These Statements Have Not Been Evaluated By The Food and Drug Administration These Products Are Not Intended to Diagnose,Treat,Cure or Prevent Disease"
I never trust companies that make unsubstantiated claims on the internet... that would be like buying snake oil! I follow the links to the peer-reviewed research papers cited in the references links on the LEF product pages and make my buying (and consumption!) decisions based on what I read there. I absolutely agree that great care should be taken buying anything from the internet!
Hi I am sorry I haven't got links....but the controversy is to do with the co-founder and president of LEF .. "Saul Kent" and others... they have a number of companies one of which is "Alcor" a company that is into "Cryonics" and the profits from the drugs go into this company and another that is into "suspended animation" this is why it is advertised as non profit making... in effect they are a cult.. and there was controversy about whether he cut off his mother's head before she died or whether she was already dead ...they freeze mostly heads but sometimes whole bodies...but have frozen bodies in the past and then unfrozen them... and buried them so the people have spent a lot of money in the hope that they will be brought back in the future...so are no longer frozen they were accused at one time of selling their drugs in America for extortionate prices...they aim is to prolong life to 150years but eventually forever.I feel they are very good at covering their tracks...but I apologise if your belief is in "Cryonics" as you are afterall entitled to your view...best wishes G
Heck... I certainly am not into cryonics! Nothing you have said has changed my opinion that LEF is a safe supplier of supplements and will continue to source our Curcumin from them. (indeed, without any independently verifiable lnks, what you have said is very much down on the level of unsubstantiated data on the internet from persons unknown - stuff I tend not to allow sway my behaviour in the slightest) - thanks all the same.
Thanks for all the comments. I have heard very good things about Turmeric. It's widely used in ayurvedic medicine. A friend urged me to try this and apparently there's a GP who also practices ayurvedic in West Wales. I've been meaning to book an appointment. Sjhe was prescirbed a thick syrup to take 3 times a day which looked a bit like Marmite but it was made of molasses and a lot of turmeric. In fact she underwent the Sugarbaker Technique and this has cured her of cancer altogether.
I agree it's a good thing to read up well before trying things but there are some treatments that I guess can't do you any harm and you might think they do you good so perhaps they do. I'm willing to keep my mind open as bleach sure doesn't work on Ovarian Cancer. I'm getting a bit nervous about my 12 month check-up. The hospital put it off by 2 weeks. I'm just being silly I'm sure but I am worried about an ache I've got. Martin says it's the discomfort of living with builders and worry about the neighbour.
We took our minds of the worry yesterday and went shopping for lights, sinks and taps. We found a brilliant shop right on our doorstep and spent over an hour there choosing things. Just thinking of all that makes me feel better and less sorry for myself.
Thanks for all your thoughts and comments. xxxx Annie
I hope it turns out to have a perfectly innocent explanation (even cancer survivors get the standard symptoms of advancing years!
We've also had builders in during the course of my wife's treatment... we had to suspend all activity during various recuperation periods, but the end is now in sight!
This site is good to offload. Everyone understands the worry a little ache gives. I don't like to worry my family so if it weren't for all the friends on here I'd have bottled it up and would feel miserable.
What building work did you undertake? We've had plans to make the house comfortable for when I'm ill. My friend's husband had to get all sorts of emergency work done for her to remain in her own home so we thought we'd do ours whilst it's a luxury and I can enjoy the results.
We've put in a cloakroom downstairs, and most of the ground floor is now on one level with improved insulation. It's amazing the difference just a couple of steps makes if you're low on energy - or more worrying still - having to climb a long flight of stairs to get to the bathroom.
The kitchen is my real luxury. I love to cook and entertain. We've extended the kitchen by 2 m and have installed tri-fold doors looking over the garden and velux windows in the roof to catch every bit of sunshine. The garden designer has suggested a water feature in the garden would be very relaxing and therapeutic but I'm not sure we need that in Wales!
We're having a single-storey extension to give us a family room and music room (we currently have only ne reception room and two teenagers!) - nearly done now.
That sounds brilliant. It's funny how our needs change. I was pleased to be in a Victorian terrace with 3 reception rooms on the ground floor and 3 storeys. We hardly knew we had teenagers in the house. There seemed to be a room for everyone.
I think this will be our last building project. They always work out more expensive than you think - kitchens especially! We're just getting the garden landscaped after this so it's easier for me to maintain and then we'll sit back, put our feet up, and enjoy. x Annie
I use ground turmeric in all stews, soups casseroles and rice dishes. It has long been a standard in my store cupboard. I love indian food but cannot eat chilli so I double up on yhe other spices! Must see if Tullivers in York sells the pure extract! I can add it to my supplements!
M
Great news Plum - glad your wife has done so well and hope she continues to do so for ever. Thanks for sharing her (and your) success with turmeric. It seems to be one of the few alternative remedies that are put forward for cancer treatment that is not a phytoestrogen. I do now and then glug down a teaspoon or so of the powder, so am interested in your remark that the capsules are more concentrated.
Just finished my chemo last monday the 3rd. set in less than 3yrs. Does anyone now how long you should wait before taking alternative medicine treatments.I have bought tumeric capsules, apricot kernels. curcumin capsules. wheatgrass and mistletoe extract but am not sure how long to give the chemo to get out of my system or can I start it right away?Lets face it couldnt be any more toxic than the chemo! Want to give it a try to see if it will help me stay longer in remission.Be grateful for any advice a.s.a.p. thankyou.x
My wife took Curcumin with the approval of her oncologist... can you talk to yours about this? I'm not sure what all of the considerations are (I'm not a medically trained individual). It seems that some of these "alternative" treatments can actually interfere with some conventional treatments, so you need to be sure. Good luck to you.
I am sorry if I seem to have offended you...but I thought your advice (above) to Poleglass was wise.. as this is what my oncologist adviced me..I didn't think you need qualifications to encourage people... but there you go maybe you do..but by your own admission you are not medical and therefore you reply to her question was spot on !!!
Reading the these postings has made me feel sad. I think if you read the above comment again, made by Gwyn, you may realise she is obviously trying to make a friendly response, to make amends if she has upset you. She is a kind, caring person and the last thing she would want to do is to make any unpleasant feeling on the site.
I've only read this comment Solange. I'm glad you posted it. We're all very different people with different views and backgrounds and the whole point of this site is to be supportive of one another and to respect each other's views.
I'm deeply grateful for all the friendship and banter, for people to share my good times and when I'm down, knowing I have friends on the site who are here for me.
I agree wholeheartedly with what you say - we should all respect each other's opinions. I feel the same way about the site. It may have sad stories but it also has some very lighthearted ones - something I think we all need, sometimes.
I am taking apricot kernels, tumeric tablets and I am awaiting delivery of cinnamon tablets in order to take with honey, too sickly with powdered cinnamon! I started about a month after chemo but I may not have been right in doing that, I have frequent urination now and wondered if the tumeric could cause this or probs. with my old enemy tumour. I have to see my onc next Monday and I am fearful I may need more treatment only 3 months after chemo. So I may not get much of a go with the alternative treatments wish you well with your alternatives when you get the go ahead, keep us in touch, love Diane xxx
I'm really sorry to hear you're worried about things. Please don't think it could be due to alternative therapies. I'm sure what you've been taking has done no harm. I'm not going to poo-poo alternative therapies and supplements and I do keep an open mind and try most things. I think anything we can do to take positive steps to be healthy and positive can only be good.
Wishing you luck with your meeting next Monday. Let us know how you get on. I'll be thinking of you.
Thanks Annie, I was hoping for a good run with remission and taking these alternative treatment, if I have to start chemo again I suppose I will have to stop taking them. So dreading it, but I must be grateful if they can still do something love Diane xxx
After researching tumeric there are side effects for some people... and one of the side effects can be more frequent urination... so it could well be this..so try not to worry ( easier said than done) as there might be a simple answer..I do hope so... it might be a good idea to mention your extra supplements to you oncologist though..so he has the full picture..I am sending you my best wishes and will pray for you especially for Monday love x G x
Hi! daisycandoit .Thank you for your reply.its like swings and roundabouts.we seem to go round in circles trying different things and hoping they will work! Will give it a month anyway before i start and take it from there.Hope you get good news next monday.You will be in my thoughts.x
Thanks Poleglass, I am not looking forward to telling my onc, I have had some symptoms I am pretty sure it is up and running again. I am going to ask about referrel to Marsden, let you know how it goes love Diane xxx
I thought it might help to say that I'm in the same place as you but will be seeing my oncologist on Wednesday. If we are at the end of our remission it will be a blow but I'm sure we'll pick ourselves up and continue the fight.
Let me know how you get on. I'll send a PM. xx Annie
Hi Whippet, it's the same for you, I will be thinking of you too, my remission has been nearly 3 months, like the last time. Hair just looking good feeling kind of normal everyone says I look so well, it is a cunning disease love Diane xxx
But haven't you had a recurrence twice? and two operations as well ? so would this mean you have already had 3 lines of chemo ? I am so sorry that you are going through so much...and I truly do hope and pray that your symptoms is something that can be easily dealt with...love x G x
Hello Plum! I found your blog when I was Googling Curcumin which led me to ask my oncologist about taking it. He did not find any negatives so I am going to start it. I will have my third Taxol/Carboplatin next week. Did your wife take the Curcumin caps every day while on chemotherapy or did she start the regimin after the treatments were over? I have the Curcumin but I am always afraid of meds side-effects and am still hesitating. I would sure appreciate your comments. Thanks from the USA!
Sorry to hear you're going through this - definitely concurrently - there were some rat studies done that showed that Curcumin is synergistic with the platinum-based chemos (though other studies show it reduces the effectiveness of some other chemo regimes, esp. those used against breast cancer - this is why it's so important to get your oncologist to approve) - i.e. the two together work better than you'd expect from the success of each on its own. If you add in ginger which has also shown potential - e.g. ncbi.nlm.nih.gov/pmc/articl... - then this can increase your feeling of well-being.
My wife did really well and continues so to do - I hope you get on really well yourself.
Thank you so much Plum and I am pleased to hear your wife is still doing well. I am always afraid of interfering with the chemo but my oncologist says he didn't find any negatives to taking the Curcumin. I have been making tea with sliced ginger and lemon. How did your wife take ginger? Are there capsules for that also?
Did your wife have a bloated stomach by any chance? That has been a problem for me esp. after they did the exploratory laparascopy. It has gone down a lot but continues to be uncomfortable.
My wife (and I) continue to take ginger in capsule form, but any way that suits you (make lots of ginger puddings?) - my wife described her main discomfort during treatment as "pressure under the ribs" - it sometimes became quite severe but was controllable by over-the-counter analgesics - could be a similar effect felt differently? Just keep your medical team informed of anything that goes on more than a short while that bothers you - they'll know what to worry about, so try not to yourself
Thank you again Plum. I also am having under the ribs discomfort so it makes me feel better to know that is not unusual. I will talk with the oncologist.
If I can bother you with another question, the Curcumin I have also has Selenium and Broccoli Seed Extract. Does yours?
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