Calling all triple negative breast cancer patients in the UK
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Welcome merscotland. You will find so much support and Sylvia really keeps up with us. Even if you don't post much.
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thank you Valstim52. I'm not sure yet how often I will post . I don't use Facebook or Twitter so not in the habit of using anything more than emails or texts (and emojis 😀👍).
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merscotland, we are glad you chimed in. Please continue to tell us how you, even if infrequent!
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Hello Kath,
I was so sorry to read that you are having such a difficult time as you go through your chemotherapy. You must tell yourself that you have already got through two doses of your treatment and that you are going to get through the rest of them. You must remain optimistic. Please let us know as the ten days go by and your third treatment is about to take place.
It would be useful if you could print up your chemotherapy regimen in your profile so that we can all refer to it when we post. I know that you are having doxorubicin and cyclophosphamide and then you will have Taxol which is AC + T. This can sometimes be confusing for the newly diagnosed as the letter refers to the brand name of the drug. For the newly diagnosed A = Adriamycin = doxorubicin. The T is either Taxol = paclitaxel or Taxotere = docetaxel. Both of these are from the group of drugs known as taxanes.
In your post at least you say you are having better days, although you are still not strong. At least you are making a bit of progress.
It is good to know that your shoulder is better but perhaps it might be wise to leave off the Korean massage therapy.
You must try to stop thinking about any kind of metastases as it serves no purpose.
Keep eating healthily, get in a few leisurely walks, get plenty of rest and keep your mind strong and optimistic. Do everything you can to relax your mind and keep your body clear of the stress hormone cortisol. I find laughter is one of the best tonics to make your body feel good.
You are going to get through this and the worst thing you can do on your chemotherapy treatment is to worry and imagine the worst scenario.
Do you have any breaks coming up or a holiday planned?
Sending you fond thoughts.
Sylvia xxxx
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Hello Hanieh,
I was glad to know that you had seen your doctor and that you had good news. I think scar tissue is very common after surgery. You can see, Hanieh, that all that worrying served no purpose. You now have peace of mind and you must try to get on with a normal life.
I think that whether to get pregnant or not is a very personal matter and one that you and your husband will have to discuss. I can understand that your husband may not be sure about it.
Remember, it is only just over two years that you were diagnosed with breast cancer and your body has been through great trauma. It is not that long since you finished treatment and that your periods came back. You have also been on different drugs. It is not for me to say but if that were me I would give myself more time to recover.
It is good to know that you can now sleep peacefully and start planning your future.
What are you going to do during the rest of your break from work?
Fond thoughts.
Sylvia xxxx
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Hello Val,
I thought I would just pop in to say that I am glad you are on the road to recovery from your stroke and I hope all goes well with the therapy for your hand and for the lymphoedema.
Try to eat well to build up your strength.
Fond thoughts.
Sylvia xxxx
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Hello merscotland,
Thank you for your post and I am glad you have found us to help you deal with this cancer journey.
How did everything go with your planned treatment? What have you had so far?
You say that you are just coming to the end of the initial course of planned treatment. If you have finished chemotherapy what regimen did you have and how did you cope? Everyone says that chemotherapy is the most challenging but it is different for everyone.
Tell us a bit about yourself. It is good to have someone from Scotland again, as when I first started this thread way back on September 12th 2010, the first posters were from Scotland. It is interesting to have people from different parts of the UK and to exchange experiences and treatments.
Wishing you all the best and hoping to hear from you.
Sylvia xxxx
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Hello everyone,
I hope that all of you going through treatment are doing well.
Hello lilyP6 (Pam) in California, US. If you are still going through chemotherapy please let us know how you are coping with the carboplatin.
Hello 4everStrong in Paris, France. How are you and what are you doing post-standard treatment?
Hello clauclau (Claudia) in California US. How are things going with your chemotherapy treatment?
Hello my fellow Brits, ChrisAsh near Manchester UK, how is your chemotherapy going, and Foxylady, Yorkshire, UK, how are you feeling after finishing chemotherapy and have you got a date for your surgery?
Where are you my old faithfuls? Adagio in Canada, Amanda10, UK, Michael, Northern Ireland, PeterandLiz, UK, Moreshoes, Holland. We would all love to hear from you.
Hello nili, I am wondering how you are and whether you have a date for radiotherapy?
Wishing everyone a good weekend and a relaxing Sunday.
Happy Labour Day tomorrow. Enjoy it as it signals the end of summer.
Fond thoughts to everyone.
Sylvia xxxx
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Hello Mary,
I do hope all is well with you and I want to say thank you for the great effort you make with your contribution to the thread.
I was wondering whether you have had time to read the latest email from Chris Woollams, dated August 29th, and beginning with Confused about cancer? Let us clear a few things up, shall we?
There were eight different headings on that latest email, all fo which were most interesting. I was particularly interested in number 6, Worried about your bones and within that to click on The new research on keeping your bones strong.
We all know that breast cancer treatment, chemotherapy and radiotherapy, can cause osteopenia and osteoporosis.
I was also interested in number 7 Special report: Chronic Inflammation – the three causes, and within this Chronic Inflammation and all all chronic illnesses, especially cancer. If you have had time to read it I would love to discuss it all with you.
I have just bought the latest copy of What Doctors Don't Tell You magazine. I am reading it slowly as it is full of information. There is a special report in it on immunotherapy.
We shall soon reach six years on September 12th since I started this thread in 2010.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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thanks Sylvia
I wil get them to print what I am having this week. U are right it is serving no purpose and driving my family insane. I am getting there slowly I think and will be returning to work on Tuesday. I don't understand why I'm like this is crazy I should be thanking my lucky stars! I need to think logically and just get on with it! I am back at work on Tuesday which should help and I see my oncologist face to face on 12th. I will also discuss my anxiety with him then. No breaks planned soon unfortunately just my 5 weeks radio in Adelaide in Feb.
Cheers Kath
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Hello Kath,
It will be useful to have those details. I am sure it will do you good to go back to work.It will occupy your mind.I am sure your family will understand your anxiety and they will be anxious for you. Unless a person has been through cancer they can never quite understand what we go through and have to live with. You need a strong and reliable person to be with you on this journey. Do you have someone?
We shall all be thinking of you on September 12th.
Best wishes,
Sylvia xxx.
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Hi, Sylvia,
Thanks for the kind words re: my contribution, you are the one who does a masterful job at keeping everyone straight and not forgetting anybody and offering such good advice to all!
Thanks also for the heads-up about Chris Woollams latest email, I had completely missed it, it is arriving in a different area on my computer for some reason. I will have to remember to check at the end of the month for it. Or you can remind me! I will read it over and let you know.
I wanted to tell you that I am going to a symposium in October, it is being put on by Ty Bollinger and there will be appearing many of the doctors, naturopaths, food experts, etc. that appeared on "The Truth about Cancer".series that we watched. I told my sis-in-law who is also interested in these things, and she is going to meet me there. It is in Dallas, Texas, so a it's 1 1/2 hour flight from my airport. The hotel is overpriced, but seems they all are these days if they are decent at all.. Anyway, I am looking forward to that.
As I told you back in May I had my Mediport removed, it now has several little pimples on the scar. I called about it, and the nurse said it sounds like stitches working their way out. Odd, since I was told they would dissolve on their own.. She made an appt. for Sept. 12, she said they would look at it anyway.
My acupuncture doctor said he thinks the immunology treatments are the right direction for the future for cancer treatment, but he also thinks we still don't have a handle on prevention. There are so many different theories.
It's nice to see so many new people here, hello to all, sorry that I am not as good as keeping everyone straight as Sylvia is!
Talk to you soon, love, Mary
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Hello Mary,
It is strange what is happening to your emails from Chris Woollams, but computers seem to have a mind of their own. I know only the basics and I leave the rest to Raymond. The other day I discovered a lot of unknown names in my address book. I have no idea where they came from. Of course, I can remind you when I get an email from Chris.
I was very interested to know that you are going to a symposium in October put on by Ty Bollinger. I am sure that will be fascinating and look forward to reports back from you. I am sure you and your sister-in-law will enjoy it.
You are wise to check out those pimples. It is always best to have peace of mind and not to put yourself through the anguish of what it might be. It is probably due to having the Mediport removed.
I do hope that the immunology will live up to expectations, but, as you know, I think the only real answer is prevention and this is going to be hard as people seem reluctant to make an effort to change their way of life. In the magazine What Doctors Don't Tell You for September, there is an interesting article under News Focus, entitled Immunotherapy: hype or hope? Immunotherapy is the new hope for treating cancers and other diseases – but a series of deaths has raised questions about its safety. In the magazine there are two whole pages on this and there is also a full page picture of hands holding a a load of dollars, and a stethoscope in the corner, and the title is "The hype over immunotherapy is understandable for a genuine breakthrough in cancer treatment, but it is also fuelled by money". I have underlined a lot in the two page article as I read it, but need to go through it more thoroughly and then I shall print more.
I hope you can find it on line or obtain the magazine. There is so much to read here, not to mention all the information from Cancer Active.
By the way, I did not have any mention of ki 67 that someone mentioned when I went through treatment in 2005/6. I did not even get a pathology report to look at. I was just told that everything had been successful and that there was no visible evidence of cancer.
It would be useful if those going through treatment now could tell us whether they are getting too much information or too little. This applies especially to the UK as I started this thread to bring TNBC out of the dark ages in the UK.
I hope you have a good week.
Love.
Sylvia xxxx
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Hello Sylvia and all
I hope I've now managed to input the relevant info into my profile which should appear at the bottom of my posts as with the rest of you. I've had 2 rounds of EC with the third scheduled for this week. The side effects were minimal but I made sure I was well hydrated and tried to eat well. There is a 3 week gap between treatments and for 2 of those weeks I feel well however I am not working through this as I have a very stressful job in a hospital as a neonatal unit nurse manager and the infection risk is too high.
After this last round of EC I'm having 9 weekly treatments of paclitaxal and carboplatin. My oncolologist said this regime would be tough but as my tumour is large (4cm) he wanted to 'throw everything at it' ( his words not mine. This is quite a scary thought but as with all of us I will do anything if it means my chances of survival are better. One thing that bothers me slightly is that my hair seems too be growing back slowly again. I had it shaved about 2 weeks ago and noticed over the weekend that it does seem to have grown. This is a bit disconcerting as I worry that the chemo has stopped working . I have read that some of our American cousins have this treatment every 2 weeks and wonder if others have had this too?
Fond wishes
Chris
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oh dear it appears that my profile details are still not showing up. Any ideas anyone?
Chris
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Hello Chris,
About putting your details on, I was wondering whether you went to "My Profile" which is at the top of the page. You click on this and then it should be self-explanatory. Have another try.
Sylvia xxxx
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thanks Sylvia'
U are such a calming influence. It's so hard being so isolated. I'm back at work tomorrow so I'll find out my chemondetailsxand update. Had a really good day today but a little anxious now. I need to keep reinforcing the positive aspects . I have a 90% chance of non re occurance which is good and stopping think about the negative
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Hello again Chris,
With reference to your post I have noted that you will be having your third round of chemotherapy this week. Be sure to let us know how things go.
I was glad to know that the side effects have been minimal so far, but remember that things build up as you go along. You are doing everything right. Since you are doing EC as I did, I have been emphasising keeping hydrated and eating well as that is exactly what I did and the only side effect I had was fatigue.
What you describe about how you feel during the three weeks between treatments also follows my own feelings during treatment. My fatigue was the worst during the first week and then I felt fine until I was due for the next round. The first few days after the drugs go into the body are very important with regard to taking the medication you are given to take home and keeping hydrated.
I can understand that you are not working during this treatment, especially because of the work you do. You will be very vulnerable to picking up infections and you need to be very careful. I kept away from crowded places, anyone with colds, and public transport. I think you are doing very well.
If I were you I would not worry about hair starting to grow back. This is just natural. I did not shave my hair off, but let it come out naturally, which happened soon after that first bout of chemotherapy. When I went for my second bout I was wearing my wig. My head was never completely bald, but always had a bit of stubble. You do not have to worry about your hair growing back and I do not think it means that the drug is not working.
I do not know what is happening now about the regimens for chemotherapy treatment. Judging by past posts, it seems to be in the hands of the oncologist as to whether the treatment is weekly, two weekly or three weekly. There was no option when I was going through treatment. Women on the thread in the past have said that weekly or two weekly at lower doses has been easier for them.
There is no harm in asking your oncologist about this. Remember that the dose of chemotherapy drug that a patient has is based on their height and weight, so doses will differ.
I think we can safely say that with all this cancer treatment our American cousins seem to get whatever is going before us.
Please keep us informed of all details of your treatment and information that you are given, so that we in the UK can see whether we are making progress with cancer treatment and specifically TNBC. Let us know if you feel satisfied with your treatment and what you are being told.
By the way, what type of breast cancer do you have? The most common is IDC, invasive ductal carcinoma, which is used to describe cancers of no particular type.
I hope all this helps.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I am glad to know I have a calming influence on you. I hope all goes well tomorrow at work and look forward to knowing more details about your chemotherapy. I can understand the difficulty of going through this in isolation. You are right to keep telling yourself that you have a 90% chance of non-recurrence.
Sending you positive vibes.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia / all
Hope everyone is doing well and living life to the full.
I've not posted for a while , l seem to have no time and at the moment am on lunch at work so just thought I would pop on to see how everyone is doing.
I'm not feeling too bad at the moment , trying to keep to a healthy rainbow diet and still doing a bit of running twice a week also go on my exercise bike every other night. I've read exercise is very important for us , although I question this as I was very fit before.
I was wondering they say for us triple negatives reaccurance reduces after 18/ 24 months, does this go from date of diagnosis or on finishing treatment?
Anyway just a short post for now as I have to start work. Hoping you are all well
Love Amanda
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Hello Everyone,
Just checking in to report from the chemo front. I finished with Taxol, though for 4 of 12 weeks I had both Caro and Taxol. It wasn't easy, but it was somewhat manageable. At the end, I was completely exhausted, yet by last Mon, I was starting to come around again. On that day I took my husband in for a colonscopy. He's absolutely fine, thank goodness.
I had the week off of work for the first of 4 AC treatments. Last Tues the nurse injected 2 large syringes of the Red Devil into my IV. I was not too bad that night, but the following day, I was completely out of it, feeling almost "underwater." I was taking a very specific nausea meds at specific times, but not able to eat much except applesauce, Ensure (meal replacement), smoothies, and crackers. By Sat the nausea seemed to indicate that I needed to eat something, so that was tough.
I've started eating small meals and trying to putter around the house, as the chemo nurses encouraged. I'm still not really well. I am, however, looking forward to not having an infusion tomorrow, and having some good days. The next treatment is on Sept 20, and I have 3 more before I can enjoy the chemicals leaving my body and feeling like myself. If all goes well, that will be in Nov.
A lovely friend unexpectedly dropped of a meal yesterday. That has been a rarity and a treat for us. Maybe people don't cook as much as they used to, but I know exactly what I will do the next time someone in my life has a serious health problem. I won't ask or offer-I will simply take over some food.
I have only one "must do" or rather "want to do" today, and that's to make a very easy chicken soup recipe. Other than that, the only thing on the list is a lot of rest. It wasn't exactly a fun vacation, but the days off were needed. I return to work tomorrow. I hope everyone is relatively well today, and look forward to hearing how you are all carrying on post-treatment.
Pam
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Hello Amanda,
It was nice to have you back on the thread. I can understand that you are busy with your work. Just pop in when you can to say hello and let us know all is fine. It is so important for the newly diagnosed to see that people have got through their treatment and are getting on with their lives. It is so awful when really nice women come on the thread, get a lot of support, finish their treatment and then disappear without letting us know that they are not going to post, are fine, and want to move on. So many women have just disappeared and you are left wondering why. It is so nice if they just pop in to say hello, to share an anniversary etc.
I am glad you are not feeling too bad at the moment and are trying to keep fit and healthy with a rainbow diet and exercise. It is true that a healthy diet and physical activity are very important in trying to keep breast cancer at bay.
I would not worry about what is said about triple negative and reduction in the risk of recurrence. Just keep doing what you are doing and try to avoid negative stress in your life as it just increases the level of the stress hormone cortisol in your body, and you do not want this. It is usual to count survival times from the date of diagnosis. Others say it is from the date you finish treatment, but none of this really matters. My oncologist told me firmly that it was from the date of diagnosis, which, for me, was June 20th 2005, a date I am not likely to forget.
Learn to laugh at life and not to take things too seriously. Try to watch some of the old sitcoms that have been redone. This past week I watched the new version of Good Night Sweetheart and of Hyacinth Bucket. They were hilarious and made me feel good.
Take care and pop in when you can.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
Thank you for your post and for letting us know how you are getting on with your chemotherapy journey. It is not surprising that after the carboplatin and Taxol you were feeling exhausted. I do not think any of us escapes the fatigue of chemotherapy and as I have said before it tends to build up as you go along.
With all that you are going through I was glad to read that your husband is fine after a colonoscopy.
I do hope you will get through your AC treatment without too many problems. It is said that Adryamicin (doxorubicin) is quite hard to tolerate and it is no wonder that it is called the Red Devil. I had Ellence (epirubicin) here in the UK which is the same group as doxorubicin and also called the Red Devil. These drugs turn your urine red. The secret is to keep as hydrated as possible, especially the first few days, but all the time really.
I think being hydrated makes you feel that much better. Keep up the good work. Keep eating as much as you can with small meals rather than large ones. I found that mashed potatoes helped me a lot when I was going through chemotherapy and ginger tea was really useful.
I have run out of time but I shall continue during the week.
Were you given any Neulasta or Neupogen injections the day after your chemotherapy to keep your white blood cells up, or did you not need them?
Sending you fond thoughts.
Sylvia xxxx
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Hello Syliva
Figured out how to add my profile - I had forgotten to enable the 'public' button so all my details were there, just not being displayed.
Thank you for your reply and the advice / reassurance ; it is good to hear a voice of calm and reason in the middle of this nightmare, especially as you have been there yourself. As you can see from my profile my diagnosis is invasive ductal ( no specific type) . My tumour is quite large and I can honestly say it came out of nowhere. It was picked up on mammogram but only after the biopsy was I able to feel itv myself. I had 1 node biopsies at the same time and that came back clear but I guess when the time comes for surgery I will have a sentinel node biopsy too. I haven't been given a 'stage' yet but again I think that maybe because I still need surgery. My chemo is on Thursday but I see the oncologist on weds so I intend to ask about the gap between treatments and will let you all know his response.
. I am puzzled at the numbers of women who have small (<1cm) tumours and wonders whether these were here picked up on mammo or breast exam?
Lilyp (pam) your diagnosis is v similar to mine. Did you have taxol and carbo before AC? And have you had surgery also?
Relieved to find you all ladies 😊
Chris xx
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hi Sylvia
I will try and update my profile tonight but I am currently due to start my 3rd of 4 21 day cycles of AC (cyclophosphamide and doxorubicin) . After that u wil go in to 12 weekly cycles of taxol (paxitolthen 5?weeks radio next year
Cheers
Kath
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Hi Sylvia and all
First of all I want to thank all of you for all your encouraging words during my agitation about that lump which came out to be a scar tissue.
For all who are in the process of treatment: two years after all these, you will barely remember all the details of the pain and suffering of the treatments and they will remain as a vague memory. The only thing will be the stress management which a lot of ladies here have managed really well.
Sylvia, now I am in one of my classes giving the final exams. Today,by 8 pm, this term will be finished and I will have a 2-week vacation. Also,the schools will start on 24th of September. So , my daughter has two weeks to the beginning of the academic year.
Next week, on September 15th, we are going to go to Russia for one week. 3 days in Moscow and 4 days in Saint Peterborough. I'm really excited about that as I have always loved to visit Russia. I will send you some pictures.
Lots of love
Hanieh
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Hello Sylvia and All,
Thanks for the reminder about staying hydrated. Of course I do, but I think I might focus more on flushing those chemicals out intensively during the injection and the day of. It couldn't hurt. It's funny that you mentioned mashed potatoes, because those are on my list for next time. When I'm really nauseous, I can usually handle a potato.
As far as the Neupogen shot goes, I do blood work the day before infusion, and so far my levels are low, but not low enough for the Onco to order the shot. I'm sure they got lower these last few days, but I won't have more labs until the 19th. I'll ask about that when I meet with his assistant next week.
ChrisAsh, Yes, your diagnosis is similar. I did Carbo/Taxol first, which I understand is a somewhat new protocol. I won't have surgery until Dec.
I feel better today - what a relief. Chicken soup and time pulled me through this one. I have just a quick moment before lunch is over. For all here, thanks again for your posts. They are a comfort, and in fact a form of stress management for me.
Pam
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Hi all
I haven't posted any links for a while and so to make up here are 3.Numbers 24, 25 & 26:
http://www.onclive.com/peer-exchange/2016-advancements-breast-cancer/immunotherapy-for-tnbc
https://www.brunel.ac.uk/news-and-events/news/articles/New-targets-to-attack-aggressive-cancer
https://bmccancer.biomedcentral.com/articles/10.1186/s12885-016-2698-y
M
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HI, ChrisAsh,
So many people here with TNBC have said the same thing, "my tumor came out of nowhere." Mine seemed to as well, I had a mammogram in September 2013, a full gynecological exam in December 2013, and less than a month later I found a 2 inch tumor in my breast. Crazy stuff. Most of the women I know who have or had E+ receptor BC, found out through mammogram. In some cases it was tiny. TN seems to my unscientific eye to be very fast-growing.
Glad you have found us!
Talk to you soon, Mary
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Hi, Sylvia and all here,
I have been looking at Chris Woollams' latest post. The first article is about glutamine vs. glutamate. After reading it I have to say I don't think I am going to put this topic very high on my list of "things to worry about." Sounds like it's very debatable whether one or both is bad for us, and in any case our body manufactures them so it's rather hard to get away from. I have been reading more about mercury in fish, fortunately I like Alaska salmon because many of the fishes turn out to be heavy carriers of mercury. It's hard for us to get fresh ocean fish here, we can catch perch, bass, catfish in our rivers lakes and streams. They are okay. Ahi tuna is one of the fish said to be very high in mercury, I have seen that on many restaurant menus, and in sushi. Supposedly it's a no-no. I do have some control over what fish I eat, so will worry about that instead of too much about glutamine vs glutamate!
Next Chris goes back into the Rainbow Diet, and emphasizes how important it is to have a healthy diet to help keep cancer at bay. What follows here is part of the next article where he states the theory that the cancer stem cells cannot be stopped by drugs, but need to also be treated with a good diet and bioactive supplements if necessary.
quote "We now know that cancers from stomach to brain tumours, and breast to myeloma, all have ´cancer´ stem cells at their heart. While current drugs can knock tumours back 40 to 70 per cent, no drug exists today that can completely wipe out the 3 per cent of cells (the cancer stem cells) that lie at the heart of a cancer.
The researchers say "eating inappropriate foods and their ingredients may result in the loss of regulatory molecules and promote the aberrant or uncontrolled self-renewal of cancer stem cells. But eating other foods containing specific natural compounds can stop the self-renewal".
And it goes briefly into the cancer-fighting compounds. Sylvia, green tea is always named in every anti-cancer protocol. I still do not have as good a habit of drinking it as you do, I have to work on that.
The next article is about the benefits of light exercise when you have cancer, or had cancer. Walking is fine, he says. This bothers me since now I have the weakness in my legs I cannot walk as I used to, I am not sure what to do about it. I do what I can, and try to be on the move most of the day but cannot walk much distance anymore. What consoles me a bit is that before cancer, I walked a lot and got cancer anyway. So I'm not sure what that means. I think Amanda referred to that as well! My opinion is to walk as much as you are able, the article says there is no need to overdo it, but it does say that breast cancer patients should be slightly out-of-breath when they walk. I miss those days!
I have to close now,
Will resume later!
Love, Mary
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