This discussion has been locked.
You can no longer post new replies to this discussion. If you have a question you can start a new discussion

Anyone taking Fucoidan (natural compound found in Seaweed)

Curious to know if anyone else is taking Fucoidan in tablet or other forms and what they have experienced? 

Seems there is research being done although not aware of any clinical trials (~3,120 papers on google scholar for search 'fuoidan cancer' since 2011)


Thanks
JK

  • I was diagnosed in January 2015. I was told that I had stage 4 cancer and that the tumour was so big that the doctors feared that it had passed through the stomach wall. The doctors recommended that I have surgery to remove the turmour and to have a course of chemo after. I had surgery in March 2015 and a couple of weeks after, I met with my oncologist to discuss chemo. The oncologist told me that if I chose to do nothing, then it would be my choice. I chose to do nothing.
    Now I'd like to make something absolutely clear. I am not an advocate of natural healing methods, nor am I a follower of chemotherapy. The last thing I would ever do is come on some forum and try and convince anybody (new or old members) to do anything. If you had bothered to read my message properly, instead of jumping on the band-wagon to get your point across, you'd have seen that I was purely pointing out that I didn't fancy chemo. If you actually believe that people would choose not to have chemo after reading my message, then you are not giving people enough credit to be able to make up their own minds. Which is more than could be said for my oncologist. He gave me a pamphlet about Capecitabine (Xeloda) and all the side affects. He tried everything to get me to have chemo and he was quite self righteous when I refused. I just decided that I will try and heal myself, which is my right. I'm a very strong willed person, hence the username. When they told me that I had cancer, I wasn't afraid at all. In fact, I was more embarrassed than scared. I hope that everybody who is affected by this terrible disease does everything they can to beat it. I know I will:)

  • Hi willbeatcancer....... the great news in all of this is that you had surgery which appears to have been very successful and removed the tumour in its entirety.  Chemo will have been offered as an insurance to mop up stray cells rather than as a necessary treatment.  There is a big difference!

    The new thread on the forum about living with secondary breast cancer and PET scan results shows a better example of the benefits of chemo. I do agree with you that alternative remedies are useful alongside conventional medicines as long as it is totally safe to do so. I just feel that to use them instead of is really unwise - but from what you say that doesn't seem what is happening in your case.  

    In answer to your question I am sad to say that yes - I really truly do believe that there are several people out there who are scared and maybe have no support, and they may look at what you are suggesting and feel they can heel themselves without going through heavy treatment regimes and hospitalization.

    It is great to be positive but that can also be unrealistic in some cases and when families are involved we need to keep our feet firmly on the ground for them and not promise unachievable goals. Of course you have the right to make your own decisions, but those who love you have rights too.  Your decisions ultimately affects the rest of their lives!  They will need to know that anything you do is decided because you spent hours researching and finding out about your options, asked advise of professionals offering every type of treatment you research and met others who have taken the alternative route you are proposing. You need to be sure that your decision is based 100pc  on facts and not gut feelings or instinct - your family will need to know this was done for them because you truly believe that your new knowledge surpasses the professionals.

    Please make sure you research well - there is no better place than with some of the staff here who are involved in up-to-date research!  They are a fabulous team who will do all they can to help and support you.

    One other thing - I do not know if your comments pertain to myself or Haze, but do not accuse me of jumping on the band wagon to get a point across - I have no agenda and I'm here to help, as you are too I hope. Also don't state others are not bothering to read your message properly.  That is unsubstantiated and totally undeserved rudeness that is rarely a part of this site.  We pull together here and respect each other and the volunteers who give their time to us. I hope you can benefit from  their friendship. Max

     

  • As I said, willbeatcancer, each to his/her own, which to me obviously DID mean it's your right to choose.  Please remember though, not everyone is as strong-willed as you, especially at the beginning, and some are very scared and do need help in deciding, therefore quoting negative remarks eg 'he/she had chemo and died 9 months later' about chemo really does not help.  

    Regards, Hazel.

     

     

     

     

     

     

     

     

  • Oh, I'm sure the comment was meant for me, Max, because I 'jumped on' to applaud your comments.  I still do, you always talk a lot of sense!

    Hazel x

     

  • Hi Haze...... oh well at least it has a positive in that it has got us chatting after all this time! I see you are halfway through your chemo and doing well thank goodness.  It was devastating to discover that my cancer had returned so I can only imagine what you have been going through since your news.

    I am so pleased to hear that you are doing well and coping with the drugs ok.  How many cycles until you finish?   How are your family coping with it all? X

  • Hi, Max, 

    Thanks, yes, nice to have a pleasant chat after the latest rather heated exchanges!  I had no. 4 chemo last Friday and have just come out of the usual nausea phase, thank goodness - now I can get out and about again for a couple of weeks.  I  hate having to be stuck indoors, it's so frustrating!  Have 2 more to go, Feb and March, these are 4 weekly instead of the usual 3 weeks.  Roll on March and fingers crossed thereafter!  I believe you had another session last Friday too, didn't you?   Hope all went well, you have been through so much, Max, I really admire your fortitude.

    Sadly, I don't have many family members left, and those I do have, although very supportive, live quite a distance away.  My partner passed away in July 2014, but as he had been very ill for several years I'm quite used to coping on my own, but I do find this forum a huge, huge help as regards keeping my spirits up!  The 'inspiration' threads are a marvel!  Also, once this lot has finished, I'm  hoping for a few days away staying with my ex next-door neighbours near Clacton, post-chemo appointments permitting, so that will be nice.  

    Take care, God bless.

    Hazel xxx

     

     

     

     

     

     

     

     

     

     

     

     

     

     

  • Hi Willbeatcancer,

    Great to hear that your surgery was succesful and you definitely have the right attitude to beating this.

    Here's a chemo success story for you. 

    I have Stage 4 Oesophageal cancer, diagnosed in October 2013. Inoperable and unable to treat with radio-therapy because it was wrapped around my aorta. I was quoted 2 months without chemo and 12 months, exceptionally 18 months with chemo. Unsurprisingly, I decided to give chemo a go. I responded well, my primary shrank by 60% and secondaries by about 50%. Since then I have had no treatment at all and the remaining cancers appear to be dormant. No special diet, but I've always had a balanced, healthy diet - perhaps with more alcohol than I should but life's for living! 

    One of the reasons I'm responding to your post is because so many people have an irrational fear of chemo, often based on hearsay and family experiences from decades ago. Yes people need to balance quality of life with longevity, but chemo isn't too bad if you have the right pain and nausea relief and if it goes well the results can be excellent. 

    It is always a personal choice and I respect your right to choose as much as my own. Not everyone is as strong-willed as we are and I have known people who have made bad decisions based on what they have read online, combined with a fear of chemo, radiotherapy and/or surgery, and regretted their choices a few months down the line when it has been too late. Doing nothing, or looking for an online miracle cure, can be very tempting if you don't have any real symptoms and are still in denial about your diagnosis.

    I'm not a big chemo fan, but it gave my Grandad, my Mum and now me extra, priceless, years with our loved ones. How an individual patient responds to any treatment can be a bit of a lottery but as they say of the Lotto - you have to be in it to win it! 

     

    Best wishes
    Dave 

     

     

  • Hi all

    I have no wish to jump on anyone's bandwagon but my head (and heart) certainly would not wish to put anything into my body that has not been tested for safety and not properly monitored whether cancer related or just in general terms.

    I had no choice when my husband made his decisions but what I did do was support him all the way as he tried so hard to stay a part of his family even though he had no option for surgery or prolonged chemo as his body rejected the latter but then it also rejected a healthy diet. His form of cancer (Mesothelioma) was 'terminal' from day one of diagnosis and whilst accepting this we also tried to keep him as healthy and comfortable for as long as we could manage.  Without my forum friends and their generosity of spirit/advice/understanding our journey would have been, without question, so much harder to take.

    Wishing all who read this a good day today. Jules

     

  • Good to know that you are well over half of the way there with your treatment - imagine how great you will feel by the Summer !!!!  I think you should share yourself around your family during the nice weather and be pampered a little - I am sure they would be more than happy to oblige!

    Yep you are right - sounds like we had chemo the same day last Friday.  I have a PET/CT scan on this coming Monday so will know by Monday evening whether they will be changing drugs again or I will be sticking to this regime for another 5 (have had 7).  You are also right about my fortitude I guess - its something I am so used to that I rarely think about it in depth.  Since June 2012, I have had chemo weekly for a year and then 3wkly since 2013, a liver resection, 2 liver ablation procedures and brain radiotherapy.  When you think about it, it is incredible what some people's bodies can endure isnt it?  Whilst others, have a minor fall or infection and end up passing away through complications.  Life is a weird old game - and I am thankful every day (well 99%) that I am still here and can chat to the kids, walk the dog - oh and annoy my husband haha!

    Im sorry that you are going through this alone Haze, and although I am sure that you are used to it, I am also sure there are times when you wish you could talk things through with someone close.  As you say, this forum is a Godsend for many as people generally totally understand your thoughts or have been through similar - until you have been through it yourself, none of us can really comprehend what is involved practically and emotionally when you have this disease.  I have made some wonderful friends here and I know that you have too.

    Clacton sounds nice - I have never stayed there I dont think. A break away will do you the world of good, I love North Norfolk and the Southwold area of Suffolk.  There are some lovely quaint villages in both areas and fantastic walks/beaches to see. Plus they are all within an hour or so of home if I needed to get back healthwise.  Funny how your tastes change as you get older - I can remember craving all-night boat parties in Spain at one time !!!! 

    Well, as I said before, I am so glad we have got to chat together - lets keep it up!  I am going to try and persuade my oncologist to let me have an extra week of no chemo this cycle so I may be having the next infusion alongside you again.  It is our 40th wedding anniv in Feb and I have a BIG birthday in March, so delaying chemo for a week will fit in better with chemo appts and side-effects.  Fingers crossed - a week's reprieve will seem fantastic to me lol - what a saddo !

    Take good care and speak soon x

     

  •  

    Talking of forum buddies - just saying hi to Jules and Davek.  Hope you are both enjoying the rain and sleet that this week has brought us.  It has also brought me a car MOT, house building/contents insurance bills and a heating boiler repair/service.  Lovely - just what we need after Christmas expenses!

    Also to 'willbeatcancer' ...... I am really glad that others have been along to post on your thread.  I hope this week is going well for you and please let us know how you are doing when you get a chance.  We have had a shaky start but things are not always perfect as we well know - here's to friendship and mutual support  whatever our choices x