Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia
I have just been updating the JCF web site. I don't often pay much attention to research on mice but this: http://lyranara.me/2013/07/27/a-form-of-small-pox-virus-shows-potential-for-treating-triple-negative-breast-cancer/ I do find exciting. As far as the foundation money rasing efforts are concerned there hasn't been much happening as I have been pre-occupied with my own treatment.
I am due a PET scan on Monday and I must say I am apprehensive about it, not least because I have never had one before. I think I have got too comfortable with CT scans, if that is the right way to put it.
Weather here us showery but quite pleasant.
Best to all
Michael
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I saw an American MD here who also has a doctorate in pharmacology and has studied nothing but BC since the 70's. We discussed my BC and my chemo and I am taking the following supplements:
Alpha Lipoic acid, 500 mg per day
Beta carotene, 100,000 IU per day
Cod Liver Oil 1 gram/day
Fish oil 2 grams/day
Boswellia Serrata 500 mg 3x/day
Equizym
Vitamin D (of course, prescribed by my GP. My Vitamin D levels were on the floor when all of this started).
Iron (prescribed by oncology)
Vitamin B complex (prescribed by oncology)
And that's it!0 -
Hi Sylvia,
I haven't been able to post as Oskar is up at 6 to 6 30 everyday and it's all go after that. He is going home on Bank holiday Monday 5th. I think that we are running on reserve energy levels!
Will catch up later, he has just arrived with a big smile.
Thoughts to all in treatment
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Hello Michael,
Thank you for your post. I am always glad to hear from you. Thank you for the link and I shall try to have a look at it tomorrow. If you find it exciting I am sure it must be of interest.
I can understand that you are preoccupied at the moment with your own treatment and I am sure I speak for everyone when I say we are all thinking of you and wishing you well. I do hope you are not feeling too unwell with the treatment.
I hope that all goes well on Monday with the PET scan. It seems that it is something they have now taken to using in this country. When I was diagnosed it all seemed to be CAT scans and bone nucleide scans. I have never had an MRI scan or a PET scan. I do not think I would cope well with an MRI scan from what I have seen and from what I have been told. The American women seem to have PET scans. Have you been told what to expect? I can understand that you are apprehensive. It is the waiting that is the worst. Please let us know how you get on.
Here in Exmouth we have had some rain and cooler temperatures and I felt my usual energy come back but today we are back to heat and Exmouth is heaving again. I am amazed how some people carry on talking non-stop. It can be very tiring and I wonder what they have to say all the time. I do like silence and I do like to think.
Wishing you all the very best.
Sylvia.
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Hello susaninicking,
Thank you for your post. I was interested to know that you saw an American MD who also has a doctorate in pharmacology and has studied nothing but breast cancer since the seventies. It would be so nice to have friends like that and grill them for information.
I was most interested in the supplements that you are taking, some of which I had never heard. I think I saw Alpha Lipoic acid in our natural food store the other day. I have never heard of Boswellia Serrata or Equizym. What benefits do you get from taking them?
It looks as though you are taking good care of yourself.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello linali (Lindsay),
Thank you for your post. I am always glad to hear from you.
I can understand that you have not been able to post because you have Oskar. I can imaging how busy he is keeping you but I bet he is giving you a lot of happiness! You are going to miss him when he goes back home on Monday August 5th. Are you going to do anything special on your Bank Holiday?
I hope you are managing to keep up to date with reading the posts as quite a lot of information gets posted.
The heat seems to have come back in Exmouth and the beach and seafront were packed today. If the heat continues I think I shall be having some quiet days indoors and shall try to catch up with my reading. There is so much that I want to read but I do not seem to have enough hours in the day. A new book has just come out entitled A Day in Your Life by Dr Hilary Jones and it is about the workings inside your body throughout the day. It seems highly readable and I hope to read it sometime. I am still reading the 10 Secrets of Healthy Ageing.
I hope you are keeping well, that the centre is going well and that your family members are well and happy.
Thinking of you.
Sylvia xxxx
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Here is the rundown as best I can specify:
Alpha Lipoic acid - helps with chemo SE's.
Beta Carotene- Blocks BCL2. You can read about this on wiki. Complicated.
Cod liver oil - vitamins A and D
Fish oil- helps with chemo SE's, increases efficacy of chemo
Boswellia serrata- blocks inflammation
I do not know if the supplements are working but I seem to be zipping right through weekly Taxol.0 -
Hello everyone,
If, like me, you are wondering what Equizym is then look at the following link. Sounds like something healthy to take, as it boosts the immune syste.
http://www.sanovet.com/en/digestion-liver.php
Best wishes.
Sylvia
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sylvia - you made me laugh when you mentioned about people talking non-stop all the time - I find the same thing here with people on their cell phones all the time - I just wonder what on earth they have so interesting to talk about non-stop!!! And needless to say, like yourself, I like quiet moments - time to reflect and ponder life. Of course, I do enjoy good conversation too.
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I am also going to google Boswelia - I have a feeling it is related to frankincence. I do rub frankincence oil into my tumour site most days and I am also considering taking it orally by putting the oil in a gelatin capsule. I have read that frankincense is a powerful anti-inflammatory - so it can't hurt. I have a pharmaceutical grade frankincence oil madeby doTerra - an American company.
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If I google Equizym everything comes up in German pertaining to chemo. We found this supplement in a magazine up in my chemo dept. (all gyno/female oncology). I do not read too well in German but my husband read about the supplement and was convinced I should give it a try. My gyno/oncologist was not convinced but I was so miserable during EC that I would have tried about anything. I have just remained on it through Taxol. It has the following composition: extracts from pineapple, papaya, lentil protein and then saline. I started it late in my EC infusions and did not notice much difference but have just remained on it. I'm not too homeopathic myself but wanted to support the chemo in any way possible and help my SE's.
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Hello Michael,
I have just looked up the link that you put in your last post and I must say that I did find the research really interesting. I think everyone on this thread should read it as it sounds as though this vaccine might be a real breakthrough. Of course once again all this is only at the mice stage! It needs to get into trials on people, but all of this is so slow. Thank you so much for supplying this information.
Thinking of you.
Sylvia.
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Hello everyone,
When I posted a list of healthy foods a few days ago I was surprised to find mustard listed, so of course I had to find out why, because all the jars of mustard on sale in the supermarkets seem to me to be adulterated with other ingredients. I bought a small tin of mustard powder, which I remember my parents and grandparents always had. I added it to the organic hummus that I put on my meals very regularly. I had already added turmeric and this combination is delicious. I often put it on bread as well. Of course, mustard is made from mustard seed and I discovered it is full of healthy nutrients such as omega 3. I am posting the link for you to read about mustard yourself.
http://health.wikinut.com/Healthy-Foods-Mustard/16jq.hme/
Let me know what you think.
Recently I read something about how triple negative breast cancer is more akin to prostate cancer than anything else. Has anyone more information about this?
I hope you have all had a reasonable week and are looking forward to the weekend.
Best wishes to everybody.
Sylvia.
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Hello adagio,
Thank you for your posts. I was so glad to know that I made you laugh. We all need to do a lot of laughing. It is definitely true that people seem to be glued to their mobile phones and seem to clutch them near to them all the time as if they were a placebo. I think that technology is perhaps getting out of hand. I think it is very anti-social to have mobile phones ringing in restaurants etc. and people carrying on loud insignificant conversations on them. When they first came out they were called car-phones here and were supposed to be for use in cars in an emergency, and that was a good idea. Very soon people here were using them while driving, being distracted and causing accidents, so a law was passed making it illegal to use these phones while driving, but many break the law. I think that they are now being overused and have become a social problem. We have one mobile phone that we keep with us in the car in case we are ill or in case the car breaks down, but for many they are a way of life, especially for young people. They seem to spend all their time texting and as a result have no sense of grammar and cannot spell. I like to chat with people but I do love silence as well. I truly believe that we all need to engage our brains before we open our mouths! I believe silence is golden and a still mouth a wise head makes.
I was very interested to know what you said about Boswelia and shall certainly shall be looking it up. I do remember a fascinating programme some time ago about On the Frankincence Trail and it was all about how valuable frankincence was, especially in the past. If it is a powerful anti-inflammatory it must be very useful. I think the Germans use much more of all these products than we do here in the UK. I am convinced the Iscador I took all through my treatment must have helped me and I know that it is used in Germany in the treatment of cancer. Iscador comes from mistletoe.
That is all for today.
Fond thoughts.
Sylvia xxxx
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Hello susaninicking,
Thank you for your post. It is so interesting reading about all these products. It is true that if you Google Equizym you do get all the information coming up in German but I did somehow get something in English. It does sound like a really good supplement. I think you probably did the right thing to take it.
I must admit I do not take much notice of the medical establishment when they denigrate anything other than their own orthodox medicine, which keeps us alive but causes so much harm. I took homoeopathic treatment all through my breast cancer treatment, through chemotherapy, surgery and radiotherapy and went through it all pretty easily. Did it work? How do I know? I was under the care of a consultant who had also worked in breast cancer and was referred to her by my orthodox breast cancer consultant. I think, in the end, we have to make our own decisions.
I hope you have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello adagio
It sounds as though this Boswellia Serrata is another supplement that seems to be useful for aches and pains and as an anti-inflammatory. You might be interested in the following link.
http://en.wikipedia.org/wiki/Boswellia_serrata
This is yet another tree and is described as Indian frankincence. Again, I cannot see why these products should be frowned on, after all the taxanes come from a tree source.
That is all for now.
Best wishes.
Sylvia xxxx
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Hi Sylvia, one thing about the supplements...the radiation oncologist said I have to get off of everything during rads. Hmmm.
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Hello susaninicki,
Thank you for your post. I have just had a look at the homeopathic medication that I took during radiotherapy as prescribed by my homeopathic consultant during radiotherapy. I took X-Ray and Belladonna, I think in powder form, as well as Arnica cream to help with healing. I was told at radiology not to use Dove soap during radiotherapy as it contains metal.
I had no problems at all during three weeks of radiotherapy.
Thinking of you,
Sylvia.xxxx
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Hi! Just a quick update ... I see the doc today. Metformin, in non-diabetic patients, revealed a significant decrease in Ki67. More to come!
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Hello InspiredbyDolce,
Thank you for your post. I hope all went well when you saw the doctor. Please keep us updated about metformin and what happens to you. I was interested to know what you said about metformin decreasing the Ki67. I wonder what this means exactly. Does this really mean that metformin will help to stop a recurrence? I have already made my decision to stay away from all medication. With over eight years out since diagnosis, I shall see how far I go. At this stage of the game I would not take metformin because it would muddy the waters about what is happening now to keep me cancer-free so far. I am suspicious about cheap drugs that seem to be in use for entirely different things. If you take statins, it lowers cholesterol levels in an unnatural way by interfering with normal processes in the liver and it does not prevent heart attacks but it does cause nasty side effects including muscle wasting disease known as rhabdomyolysis. Moreover, I have read a lot about it is not the cholesterol level that is important, but the homocysteine level that is important.
Wishing you well.
Sylvia xxxx
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Hello everyone,
I hope you had a good weekend and that all will be well this week.
To Michael, I hope all goes well with your PET scan today.
To Carolben, I hope you are doing well.
To susaninicking, I hope you have a trouble free week on Taxol.
To sam52, adagio, peterandliz, linali and PeggySull, I hope all is well with you.
Best wishes.
Sylvia.
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Hi Sylvia
I had the PET scan today, I have a feeling it also included a CT scan.
One has to fast for six hours prior and then when you arrive you have height and weight checked and blood sugar level measured. This is followed by a radioactive glucose injection and you lie still for an hour, then the scan. It takes about 20 minutes, at least I think it does. The whole process began at 10:45 and was finished at 12:25. The machine is about double the thickness of a CT scanner.
I was told that I am radioactive for about six hours and to avoid contact with pregnant women and babies. I hope I am not doing the dog any harm :-(
I don,t know if any people here visit the JCF website but I noticed that sometimes it appears that it hasn't been updated, if that is the case for anyone it means that their web browser cache needs to be emptied. If anyone needs instructions on how to do that I can post it here.
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Hello Michael,
Thank you for your post and thank you for your detailed account of your PET scan. These kind of details are so important for the newly diagnosed and others going through treatment, as it gives them an idea of what to expect and that can be less frightening.
It sounds like quite a long process and must be quite difficult to get through. I think an hour lying still after the injection and before the scan must seem like an eternity. It is interesting that you said you thought the PET scan also included a CT scan.
I looked up PET scanning in a medical dictionary that I have and it is described as Positron-emission tomography, a Nuclear Medicine diagnostic technique that works by identifying positrons – positively charged electrons – given off by substances labelled with radio-active varieties of elements.
Apparently the result of this is three-dimensional images that identify metabolic and chemical activities of tissues, especially brain tissues. The images provide information about tissue and organ functions and can be collated with structural images using Computed Tomography (CT scan), or Magnetic Resonance Imaging (MRI scan).
Do you know exactly what they were looking for?
Guess what, Michael? This book also says that the PET scanning equipment is very expensive and available only in selected hospitals in the UK.
Did they tell you anything afterwards? I do hope all will be well.
The thing about the radioactivity reminds me of when I had a bone nucleide scan before and after treatment. it was also a long process and I was told to stay away from people, especially children, as I was radio-active for twenty-four hours. I do hope your dog will be alright!
It must be a relief to have that behind you and I hope you will be able to do something relaxing this week to take your mind off things.
With all these scans (PET scan, CT scan, MRI scan and Bone Nucleide scan) it does make you wonder how the medical establishment coped before they had them.
Have you ever had an MRI scan? It is a scan that fills me with dread as apparently it is very noisy and claustrophobic.
Thank you for your information about the JCF website and pointing out that it sometimes appears that it has not been updated and how to deal with this. Raymond told me that you can also update things by clicking on Refresh in your browser.
I do hope that people are using the JFC website, as it has loads of useful information.
It is a pleasant day here in Exmouth, not too hot but dry and sunny.
Did you see the programme last night on BBC1, Long Live Britain. It was all about mass testing of hundreds of people around Manchester to find out if they are heading for the three main killers in the UK, diabetes 2, heart disease, and liver disease. They were doing it in stages. The first stage was measuring your waist and showing where the waist is, since most people seem not to know. It is just below the “belly button”. If it is above a certain number you are in trouble. They coordinated it with your weight and height. I think this was an indication of diabetes 2. Some celebrities were being tested and were actually diagnosed with diabetes 2 on the spot. After this test you went on to the next two which showed up problems with arteries and fatty livers. It was all quite frightening and I thought to myself as I watched how wonderful it would be if we all got tested as thoroughly as this under the NHS, as they were looking to prevent development where possible. I find the NHS, especially at the GP level, very lax with preventive testing on the whole. There was a break for the 10 pm news and the programme was to continue afterwards but I felt too tired to stay up and watch it. If you saw it I would love to know what happened.
I thought it was a pity that cancer was not included in the programme, but I can see the difficulties with that.
That is about all for today.
Fond thoughts.
Sylvia.
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Hello Michael,
I have just discovered that you can view the programme I mentioned on iPlayer. Both episodes are available for the next six days. I shall try to watch episode 2 later today. The link is:
http://www.bbc.co.uk/programmes/b037lrq9
Best wishes.
Sylvia
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Hi Sylvia,
I'm an MRI expert! I'm also claustrophobic. Take an eye mask ( without metal), put it on before they slide you in the tube, and do not move! Do deep breathing. Go to a happy place if you can. My last one I counted ( or tried!) the different bangs. It is loud but not eardrum splitting. I've never had one longer than 30 minutes but found it not as difficult to lay still as I thought. They will give you time to get comfortable. There is also a panic button and you can talk to the operators if needed. Good luck! They are 10000000 times easier than stereotactic biopsies and those diagnostic mammos where they just smash the nipple end of your breast. SHUDDER!0 -
Hello susaninicking
Thank you for your interesting post. I shall answer tomorrow when I have more time. It has been a very hectic day today.
Fond thoughts.
Sylvia xxxx
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Hello all: It's been awhile since I've visited here. ALL IS WELL with me and like others, "reading about" cancer, for me, tends to encourage dwelling on all the negative . . so I too have taken a break. NOW, though, I need your collective advice. I had a pap smear last year when diagnosed with TN BC which came back "questionable" - repeat pap smear last fall was o.k - repeat pap smear in July was back to "questionable". I have met with the gynecologist and surgeon and am scheduled for prophylactic hysterectomy/oophretomy later in September using the robotic laporoscopy method. (BOY, that is a lot of words!) Who has experienced this, tell me ALL about it, the good, the bad, the ugly.
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Hi Everyone!
Hi Fern, I posted back to you on the TNS forum, of a bc sister, Amy who did have that same surgery done as you, as she was home the same day and had a great experience with it. I think she will post some helpful information. I can understand also what you said about being away helps. It does that with me as well.
Hi Sylvia! Thanks to everyone on this forum who helped give me the data on Metformin and who shared opinions. For those of you researching this, here is some excellent information from the National Institute of Health.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282095/ Title: Metformin: Mulit-faceted Protection Against Cancer.
I took my last 3 lab reports and two articles to my PCP. He is very 'by the book' PCP and you really can't get anything past him. I tried. I showed him my labs, and two articles. He read them both and then said "I have no problem putting you on Metformin." He started me on 500 twice a day. I knew then that something must be good in his eyes; I feel strongly he would not expose me to risk. I had to really try hard to even get him to run a B12 test on me.
Now, my prescription literature said that Metformin ..."controlling blood sugars helps prevent kidney damage ... and works by helping to restore your body's proper response..." I also read online that Metformin works by controlling circulating insulin cells.
Incidentally, my labs looked like this: Glucose levels normal, but at the high end of normal. Which is interesting, since I do exercise 80 miles a week and eat a lot of veggies and fruit, and super healthy diet. So maybe I am someone who possibly could benefit from it even from a non-TNBC standpoint as well.
The doc also ran the usual lipid panel on me, and my cholesterol was amazing. I hit optimal ranges on everything. The bad cholesterol even 20 points lowers than last year, at a 60 now. Below 130 is normal.
I also had my papsmear done on Saturday, at 8AM. That was an interesting Saturday. I just got the results back and everything is normal. However, I'm looking to Amy and Fern as my models and I'm going to follow Fern's updates about the oophorectomy. I'm plan on pursuing this, due to my age 43 at diagnosis.
I haven't had any problems taking Metformin, and I started with Brand Name only. I had read different stories on people having good or bad side effects depending on specific brands, so I decided to start with Brand Name.
So far no side effects .... except ... I don't have my sugar cravings. And for the first time in history, I'm not starving. When I started exercising last year, I couldn't keep my hunger away, and not matter what I did, I was always hungry. I wonder if I did need this then all along. Since I have gone on it, I feel fine, just not starving, and no cravings for sugar. For me, this is very valuable and I finally feel normal in that department. I can eat, and I can even eat more than my husband.
Hi Michael, thinking of you and wishing for good results. Hope you find out soon!
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Hello susaninicking,
Thank you for your post. Just like Michael, you have given a very detailed account of a stay inside an MRI scanner!!!! This is invaluable for all of us, as forewarned is forearmed. I t does not sound like a very nice experience and I hope I never have to have one!
I do agree about mammograms. They are certainly not a very nice experience.
I have never had a stereotactic biopsy and in fact had never heard of it. I have just researched it and I must admit it sounds awful. Since I always like this thread to be a learning experience I am posting the following link for those who want to know more to have a look.
http://www.nlm.nih.gov/medlineplus/ency/article/007433.htm
Thank you for all your input on this thread.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello FernMF,
It was so nice to hear from you and I am sure I speak for everyone when I say that.
I was glad to know that all is well. I can understand that everyone needs to take breaks, get on with a normal life and switch off cancer. However, in order to keep threads going, and keep them alive for new patients, who are probably feeling distraught and shocked, we do have to have some who keep going for the sake of others.
I do hope that someone will post to help you with the scheduled prophylactic hysterectomy/oőphorectomy. I cannot help you with this from personal experience, as I have never had either of these procedures.
I do know that laparoscopy procedure is also known as minimally invasive surgery and that recovery is normally quite quick from such procedures. Let us see if anyone posts to give us details of these procedures.
Keep well and keep happy.
Best wishes.
Sylvia xxxx
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