Calling all triple negative breast cancer patients in the UK

sylviaexmouthuk

,Hello Hanieh,


Thank you for those lovely photographs. I think your gardens look lovely.


I do understand what you said about the genetic testing and do agree it would be another source of anxiety for you and your family. Just enjoy every day.


Do your best with the radiotherapy and see what happens when you have finished.


Love,


Sylvia xxx.

adagio

Sylvia - thanks for the lovely photos of your cheerful living space. I love flowers and they are so welcome at this time of the year after long grey days.

I have tried to catch up on all the posts - the one that sticks out is the discussion about iodine and magnesium. I did read several articles years ago suggesting that most people are low in iodine and that is when I started to add iodine as a fairly regular supplement. I take the nascent iodine - 2 drops per day which is about 800 mcg - the dose on the bottle says one drop daily, but I generally take 2 especially if I have been a bit forgetful in taking it daily. I do remember taking even higher doses when I was going through radiation because I heard that high doses of iodine protected the thyroid gland.

I take a magnesium supplement twice a day because I tend to get a fair amount of cramping in the feet and I have heard that magnesium is beneficial for that - and I do notice a difference in the amount of cramps when I do not take it regularly - like when I go away and forget to bring it with me. I have also read that magnesium is good for osteoporosis.

I agree with you that it is hard to know what to believe about what we read, and sometimes I think I would be running out to buy lots of things if I believed all I read. H0wever - we each make our own decision about all of that in addition to what we eat. I do give myself breaks now and again and indulge in a nice dessert and a glass of red wine (not together). My integrated cancer unit says to apply the 80-20 rule - if we eat well 80% of the time, then the other 20% we can ease up - this is helpful especially when we eat out at a restaurant or at other people's homes.

We are finally having warm sunny weather - and the yard is calling my name - time to plant the flowers, veggies, and prune the shrubs.

Hope you are continuing to improve.

sylviaexmouthuk

Hello adagio,

I was glad to know that you enjoyed the photographs. Like you I also love flowers and I never tire of looking around our grounds here and watching different plants bloom.

I was glad to know that the discussions we have been having about iodine and magnesium stuck out for you. I think they are both so very important for the proper functioning of our bodies and as I mentioned to Mary I am beginning to think that breast cancer may be a disease of deficiencies brought on by our modern lifestyle of overly-processed foods, junk food etc. I have also read about most people being deficient or low in iodine, as well as magnesium and of course vitamin D. I remember that Mary is also taking the nascent iodine. What exactly does nascent iodine mean?

I have been using kelp powder for many years now. I mix it in with food after I have cooked it or sprinkle it over it. I also use Clearspring green nori sprinkles, which is Japanese seaweed. I just coat it over any wild salmon or wild haddock when it is nearly cooked and just spoon olive oil over it from what I am using to cook the fish.

I was interested to know that you were taking this iodine when you were going through radiation because you had heard that high doses of iodine protect the thyroid gland. It makes perfect sense and I did not know about it at the time. Once again, we have that lack of full information about side effects and damage from our breast cancer treatment. It makes me so angry and I feel strongly that we should be told these things before we start our treatment, so that the consent we give is a true, informed consent.

The same applies to every aspect of our treatment. We need to know the pros and cons of mastectomies and lumpectomies, not to mention the probability of lymphoedema from our surgery. Lymphoedema only gets mentioned afterwards, if and when it happens.

The same applies to chemotherapy drugs. Patients need to know that the taxane drugs can cause lymphoedema, not to mention peripheral neuropathy and damage to the heart and goodness knows what else.

Like you, I also take magnesium supplements. I take magnesium citrate and take two or three a day. They are of enormous importance in the body and for the health of our bones. I usually take a calcium citrate supplement along with vitamin D and magnesium supplements in the morning to treat my osteoporosis.

With reference to magnesium, I have also read it is very good to take magnesium through the skin. I have a large packet of magnesium flakes – Better You – Original Foot and Body Soak. This is known as a transdermal method, going through the skin. It says on the packet that flakes are ideal for replenishing the body with this essential mineral, promoting overall well-being. It further says that transdermal is the ultimate way to replenish magnesium levels. I have used it to do foot baths and find it very relaxing. This magnesium is magnesium chloride.

I am also using Better You Magnesium Body Butter. I found this got rid of the rash on my left arm and I find it to be an excellent moisturiser for the right arm where I have the lymphoedema.

I tend not to take too much notice of all the hype that goes on about wonderful products. I have carefully researched a lot of skin products and I find the best ones for me are the magnesium butter and a product called dead Sea Spa Magik Rich Moisturiser.

I think you are right about the 80-20 rule. We do have to have some pleasures and treats in our lives. I am still pretty strict and stick to a mixed diet of oily fish, wild haddock, on the shell prawns from cold water oceans, organic eggs, fruit and vegetables, organic where possible, beans, pulses, nuts and seeds. I steer clear of cows' dairy and have Alpro almond drink enriched with calcium or coconut drink enriched with the same. I stick with the bitter apricot kernels and a few supplements. I am not tempted by sugary things as I do not like sweet.

I was glad to see that Hanieh's consultant has told her that her radiotherapy can cause lymphoedema, but I do not know whether he told her before she started it or after she had started it. She has been through so much and I shall be glad for her when she has finished this part of her treatment.

Here in Exmouth, after a few mild sunny days, we are back to a Friday of pouring rain. It is also cold and windy.

I do appreciate all your posts and the fact that you have stayed with us, along with Mary and Pam in the US, Kath in Australia and Hanieh in Iran. In fact, most of the others seem to have disappeared. There are no Brits posting so I need to have a rethink about this thread. It will have been going for eight years on September 12^th this year. It may have served its purpose. There is so much information out there now that no one needs to be an uninformed patient.

Let us look forward to better weather and some warm sun.

Love.

Sylvia xxxx

adagio

Maryna - wonderful news that your MRI shows no suspicious masses - that is something to be grateful for. I am putting off my next mammogram for a few months simply because I do not like getting them. I do not tell everyone that - otherwise I feel judged - but I seem to have had a lot in the past 5 years and fear of the radiation is a huge factor for me.

So sorry to hear that your legs continue to be a source of concern and frustration for you. Pain is challenging to live with - and can wear a person down. Was the injection you got in your knee cortisone? Sorry if you mentioned this already. My daughter had the arthroscopic surgery for meniscal tears in both knees when she was in her teens - she was a competitive soccer player, and having the surgery meant she could continue playing without pain for several more years. She is now in her early 30's and can get knee pain very quickly - so the surgery is not the answer - albeit - it is a big help. If your surgeon suggests a 70% chance of improvement - that is significant - however - you would have to deal with crutches, pain and swelling in the meantime - and then of course, there are no guarantees. I understand the dilemma, and honestly I am not sure what I would do if I were in your situation. I know you do love to walk and if you cannot do that without pain - it might be worth considering. Wishing you well in this regard.

Varicose veins are something which is genetic in my family of birth - my mother had terrible veins in her legs - I unfortunately inherited them from her. When I was younger, the biggest issue at the time was purely aesthetic (which seems silly to me now). So I did have first of all injections, then I had them stripped - both of which helped imminently, but not long term. My right leg has a few prominent veins - fortunately, for me, they never hurt and my legs seldom swell - but they do not look pretty. But I am happy as long as I can use my legs and they are strong enough to let me get in my daily 10 - 15,000 steps. I am sure that as I age, the varicose veins will bother me more as the circulation becomes more sluggish. I wear compression stockings when I travel which are not comfortable by any means but are helpful in preventing the possibility of thrombosis.

Your big Europe trip is fast approaching. I have never been to Switzerland - but it sounds beautiful. I have been to Germany and we did a very short river cruise along the Rhine - it was lovely. Europe does require a lot of walking - would you consider using pain relief just to get you through your trip. Like you mentioned in one of your posts - getting away removes us from our daily struggle, both physically and mentally and emotionally - and while it is a lot of work preparing for the trip it is so worth while just to get away and have space to breathe - if you know what I mean. While I love being at home, I do appreciate getting away - it helps put a different perspective on life. Plus it is wonderful to see how other people live their daily lives in different parts of the world.

We had a lovely trip to New York to visit my youngest daughter and her husband - they are musicians, and after 3 years in Ann Arbor - they were allowed one year to spend in the US, (to look for a job) so decided to live in NY since it is the hub of classical music in North America. They do enjoy it but find the life style there to be a bit frenetic. We took our eldest daughter with us since she had never been to NY and next week she has to return to work after one year maternity leave. It turned out to be a nice partial family reunion and it was lovely for the youngest daughter to see her little niece.

We have had a glorious week in Vancouver after a long wet and cold early Spring. I have started turning my vegetable beds over and today I may even plant some seeds.

Have a safe and wonderful trip - try to relax as much as possible and simply "be". I continually remind myself that life is short and since we are alive we may as well LIVE and embrace as we are able. Take care!

maryna8

Hi, Adagio

I understand your reluctance to have mammograms because of the radiation, it does seem like we accumulate a lot in our lives. Dental x-rays, mammos, an occasional chest x-ray and I have had one CT scan, my acupuncture doc says those are among the worst for exposing one to a lot of radiation. The hospital is quite insistent about on-time mammos, an employee called me 6 months before time to schedule it, which seems odd.

I did have another cortisone shot in my knee 3 weeks ago, it has helped somewhat, I'll take whatever I can get. I do wish the arthroscopic surgery came better recommended, it would be nice to actually fix something rather than have injections. But even the doc who was telling me about the surgery didn't seem too enthused about doing it on me. The most positive thing he said was he didn't think it would make it any worse. If I could count on that I might try it, but I have also been told the opposite.

Varicose veins are not pretty, but I don't think I'm going to mess with mine anymore either. I'm with you, as long as we can walk that's the important thing; although in my case I can't walk as long as I want to. The compression hose are just so uncomfortable, on my last long flight I lasted about half-way and had to take them off. I wanted to try to sleep and they were just making me miserable. I was able to put my feet up so it worked out okay.

Switzerland does sound great, I hope the weather is clear when we are there. We have a city tour of both Lucerne and Zurich, and other side trips optional, I like the sound of the cable car ride up into the mountains. We did walk a lot last year in Europe too, in some of the places the streets were crowded and walking was very leisurely, I can do a lot of steps that way but not if I fast-walk as I used to do.

It does sound as if you had a lot of fun with your family in New York, I haven't been there but do imagine it is a very frenzied place. I am always surprised by the small size and very large price of houses and apartments there. Driving there looks like a nightmare, I guess that's why most people don't do it. How nice that your daughter and her husband are both musicians, do they play in symphony orchestra?

Thanks for the advice to relax, I am looking forward to it, things have been very busy here and I have days when I am just exhausted. I'm looking forward to being elsewhere where there is nothing to fix, or prune, or cook or clean or wash. And you are so right about LIVING: if nothing else, cancer makes one very aware that life is not a permanent condition, so we better enjoy it!

I am off for now, good to hear from you, hope you are having a good weekend digging in the dirt!

Later, love, Mary

Kathseward

hi everyone

I've just come back from 4 days with my boys in Adelaide which was great! No time to feel sorry for myself they kept me very busy ha ha. Hope everyone is well? I'm taking one day at a time and physically feeling better. Still have some aches and pains which don't seem to go away but settle with massage manipulation and dry needling at physio. Mary dry needling is very similar to acupuncture and done by physio. I had arthritis and some degenerative discs prior to chemo and taxol does take a toll as well! No pain just tightness which I can deal with but as adagio says I have to breathe and realise that it's to be expected. Wish I could tell my head that tho ha ha. Does anyone here take glucosamine with chondrotoin?Have start taking that as well and I don't know if it's psycho somatic but it appears to be helping.

Much love and have a great week everyone

Cheers

Kat

sylviaexmouthuk

Hello Kath,

Thank you for your post and I was glad to know you have been having an enjoyable time. It is good to have positive days with your family and to get your mind off breast cancer. You have got through your journey and you must look forward to a happy future. Remember to laugh a lot as this is the best medicine.

Thinking of you.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

Many thanks to Mary, adagio, Hanieh, Pam and Kath for being such strong supporters of our group.

For the rest of you who have now stopped posting, I do hope all is well with you and that you are leading full and happy lives and thank you for your contribution to the thread in the past - Val, Lou, Sarah, Kathy, 4everStrong and of course Marias.

Best wishes to all of you.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

I am just posting a few photographs from the grounds here. It has been a cold windy day today, more like November but the gardens are still blooming rapidly.

This photograph shows a colourful pieris with a skimmia shrub at the back.

These are azalea shrubs just blooming.

Azalea shrubs and at the back euonymus shrubs.

This is a photinia shrub, popularly known as a red robin.

Pieris shrubs.

I cannot remember the name of this at the moment, but it is a small spreading evergreen plant. I have just remembered it. It is a lithodora.

Broom shrub.

Flowering evergreen hebe shrub.

Flowering evergreen choysia. This is very highly perfumed.

Blue flowering evergreen, vinca. This is ideal for growing under trees.

I hope you enjoy these.

Sylvia

53nancy

Hello everyone. I hope this finds you doing well. I have been following this for some time but haven't been on for a while now. I was waiting to see how my appointment with the oncologist, would go today. Unfortunately, though my tumor markers we're down in February six weeks after completing radiation therapy, they are now up and the C15-3 is in the abnormal range. A repeat chest, abdomen, and pelvic CT scan is being ordered, and this time they are adding a CT scan of the brain. Has anyone experienced this, and how concerned should I be? I was told in February that I only had a 4% chance of reoccurrence and I was cancer free. My oncologist doesn't want to say anything more until she gets results. I may have to wait up to a month for the scans

sylviaexmouthuk

Hello Nancy,

What a nice surprise to find your post this evening. I can understand that you have been waiting for an appointment with your oncologist to see how things were going. I was sorry to read that you were told that your tumour markers were up and that this would make you worry. I do not know whether tumour markers are of great significance. I can only say that my own oncologist when I was going through treatment and I asked her about these markers, she told me she did not do them and that they did not mean anything. Apparently they can go up and down.

I can understand your concern that your oncologist has ordered these CT scans. It is difficult for us on the thread to explain this because we are not doctors, but if I were in your situation, I would want my oncologist to explain to me why she has decided to do these scans. It is your body and you are entitled to know. Since she has ordered the CT scans she must have a reason or is she just playing safe? Having to wait a month to have the scans does not seem reasonable to me. It just puts you in a state of anxiety for too long and CT scans do expose you to radiation.

Someone else on the thread may have different ideas.

Please know that I am thinking of you and sending you very best wishes.

Love.

Sylvia xxxx

53nancy

Hello, Sylvia:

Thank you for your understanding. I think and hope the oncologist is playing it safe. If she suspects something more, she did not share, but her nurse reassured me that it would not have been anything I did. I consider myself fortunate that she IS ordering the tests, because it would be almost impossible to get them done through our local hospital, and would mean months of waiting to get into see the oncologist again. We are home again; three and a half hours from her office. She said she will call me when she gets results, and if need be we may have to go back. When I refused chemo last year, she asked us if we would leave the door open for it, if necessary and we said yes. It was such a shock to hear the C15-3 had gone from 21 to 30 in three months. As much reading as I've done, I don't understand what they are about and a lot of the literature says they don't have a huge impact. As for tests, last year proved how slow the system works here in Canada. It was a month from abnormal mammo to needle biopsy; two months after that to surgery; two months more before I got results, and then another seven weeks before I was told of the TN status. from my abnormal mammogram on April 22 last year, it took until October 30 to get in to see the oncologist. I am upset because I just had a mammo last week and it was normal, but it took six weeks of fighting with my doctor to get me in again, when protocol dictates that you have a mammo a year after your last one if cancer is discovered. I will get over it though; just need some sleep. One day, one step at a time, whatever comes, comes. And thanks, always, for your support.

maryna8

Hi, Kath

I'm glad you had such a good time with boys, definitely is a distraction!

Sorry about your aches and pains, I have them too and to me it is strange pain because it does not get better with repetition as muscles should get, but they are always painful if overused a bit. As for joints, I give up. Not sure what to do about that. I find that the acupuncture does not help me much with those pains, for me it is good for whole-body balance, relaxation and just feeling better generally. I usually walk out of sessions feeling energized, and sometimes fall into a good nap when I get home. I am glad the dry-needling helps you.

I do not take glucosamine-chondritin, but have heard good things about it. And if it's effect is psychosomatic, as long as it works that's okay in my opinion.

Onward and upward, and talk to you soon, love

Mary

maryna8

Hi, 53Nancy

Good to hear from you, I'm glad you are feeling well and sorry you have worries. It sounds to me as if your onco is following protocol, since you did not have chemo and did have markers done, she is acting on that knowledge. These would be common areas to check for a recurrence. You are not having any symptoms so she is probably going by the book. Please understand I am guessing here, because I did not have tumor markers done either. When I asked about it, my onco said they are not reliable in BC cases. Nevertheless, many docs do them and I know women who have been upset by rises in numbers, only to find out it is nothing.

I know this will be a worrisome month for you, but try to remember these numbers can be affected by other things from what I have heard. Also, when you are done with the tests and they come back clear, that will be a great feeling! I'm sorry it takes so long to see your doc when necessary, but I'm sure you can always call the office with questions, at least I hope that has results in a more timely fashion.

Talk to you soon, love, Mary

maryna8

Hi Sylvia,

What beautiful pictures you posted, I can see why you are kept busy with keeping an eye on all the blooming flowers, and working with them. Some of them are unfamiliar to me, it probably gets too hot here for them to be commonly seen.

I will be leaving tomorrow, but will try to check in while away. I will post a pic too if I can.

I think you and your thread are still needed, thanks for saying I am a good contributor to the thread. It is good for me too!

Talk soon, love,

Mary

53nancy

Maryna8, thanks so much for your note and encouragement. I think it is just that I have felt so well and had a normal mammogram and this has hit hard. I am weepy this morning but once I get busy, I will be in a better frame of mind. I know that worry does not help. So - one step, one day at a time. Have a great day

sylviaexmouthuk

Hello Nancy,

Thank you for your latest post.

It sounds to me as though the Canadian health service could be going the way of the NHS here. What is the name of your health service in Manitoba. I remember from the 17 years that Raymond and I lived in Canada that the health service is run provincially.

I cannot remember what it was called in Quebec, but in Ontario it was called OHIP. We found the excellent services at the time. What we found very useful at the time were the 'walk-in clinics' that were open in the evening. We put the excellent service down to a low population in Canada. I expect the population has ballooned since then.

Here in England the NHS is collapsing under the huge population that we have here. It is about 70 million and we have not controlled our immigration and all these extra people have had an effect on health care, as well as schools and housing. We have too many patients and not enough doctors and nurses. There is a long wait for everything.

The NHS was created in 1948 for a much smaller population and for much more basic health care. I also think there is abuse of the system because of this idea that it is free. It is not free, it is paid for through taxes and is expensive. I have no idea where we are going with the NHS.

I was wondering where you are in Manitoba and where you have to go on that long journey. This is also happening here with local hospitals closing down and everything being centralised. The long waits that you mentioned during your treatment are also happening here.

I do hope you will manage to relax a little and enjoy the spring and summer and that you will not let your mind get controlled by cancer.

I think that, if there is anything wrong that comes up in your test results, that the oncologist will probably suggest chemotherapy.

Thinking of you.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello Mary,

Thank you for your post. I was glad to know that you liked the photographs I posted. I do enjoy watching the plants bloom and I am proud of the grounds here. Raymond and I have worked hard in them for the more than 16 years we have been here. The grounds were much neglected when we arrived. I have worked with the gardeners and we have a good relationship. So far this year I have not done a lot, because of the weather and because of my arm. It is going to take until next February for the part of the arm where I had a deep excision to regain its strength and muscle. I shall be doing my usual work in the garden very soon but shall have to be a bit vigilant.

I do hope you will have a very good holiday and I look forward to hearing from you if you can, but above all enjoy yourself.

Thank you for your kind words about the thread. I think you have made an enormous contribution here and I hope it has been of help to you as well.

I have just finished reading an interesting book entitled Tripping Over the Truth – How the Metabolic Theory of Cancer is overwhelming one of medicine's most entrenched paradigms by Travis Christofferson MS.

I found some parts of this book difficult to understand but most of it was highly readable. It looks as though researchers are now divided about the cause of cancer. There are those that believe it is all to do with genes and the mutation of genes, and those in this book who believe that the cause is metabolic, that it is all to do with metabolism and how you turn food into energy. The last part of the book, Appendix A, entitled Putting Metabolic Therapies to Work is very interesting. It is all about the Ketogenic Diet and of course there are the inevitable lists of foods to eat and foods to avoid. The belief is in a high fat diet. In this respect it was a bit like the high fat diet in the Dental Diet book. If you get a chance to read some of this book, I would be interested to know what you think. There is a great belief in fasting, but not for days on end.

There is a lot about ketones but have not quite understood this.

There is something called The Glucose/Ketone Index Calculator. Apparently this was developed to assess the potential therapeutic effect of various low-carbohydrate and ketogenic diets for the management of cancer.

It all gave me a lot to think about, especially what I read about diabetics. Apparently diabetics taking Metformin do not develop cancer.

This coming week I am hoping to switch my mind off cancer and read a more entertaining book. It is entitled English – a story of Marmite, queuing and weather, by Ben Fogle.

I am watching a great drama on BBC at the moment. It is an adaption of the novel The Woman in White by the classic author Wilkie Collins, also famous for the novel The Moonstone. Have you read these as I know you are a great reader.

Have a good holiday.

Love.

Sylvia xxxx

53nancy

Sylvia, having come from Ontario and living in other Provinces before I came to Manitoba, I have ALWAYS felt that OHIP is the best in Canada. Here, it is called Manitoba Health Care. Yes, it has it's weakness and there are changes being made that will start bring costs into our lives, but at present our health care is "free"e and, after we reach our deductible amount for medications, they we don't have to pay. We live in Southern Manitoba and have a three and a half hour drive to Winnipeg. It gets harder to think of doing a trip there and back in one day now; my husband is ten years older than I and has heart trouble which tires him out very quickly. This time, we went halfway on Sunday and got a motel, then the rest of the way to Winnipeg yesterday and home again.

It is true that some people take advantage of the system, and it makes it hard for those who are truly in need; however, in 2012 when we we were selling our house up north, we gave a lot of thought about going to British Columbia, and in the end decided we were better off with Manitoba Health Care. My husband definitely did not want to go to Ontario; he has lived in Manitoba all his life. We grumble about the long waits for test results and the next test to come, but are thankful that all our medications, tests, surgeries, etc. were covered. If cancer returns now, we will likely have to pay for our medications until we reach our deductible, which will take about six months from March 31st.

I won't let cancer control my life. The rise in tumor markers is just another stumbling block in the road. Thanks for all your carefor all of us; it is not hard to see that you have put a great deal of energy and research in to caring for us and helping us. I believe that it is because you have been through your own cancer journey, and you understand ours in a way that perhaps even those closest to us can never understand. I would love to know how the chemo was for you; they offered me two drugs simultaneously, but I was told by my Nurse Navigator and Doctor that they are very harsh on the body, given my osteoarthritis, diabetes and tendency to anemia. I still feel my choice to refuse chemo was the right one for the time.

adagio

Maryna - have a safe and wonderful trip. Relax and enjoy. We will miss you.

sylviaexmouthuk

Hello Nancy,

Thank you for your interesting post. I was interested to know that you had come from Ontario. Raymond and I lived in Ottawa for nine years and in London, Ontario for four years. Before that we lived for three years and a bit in Montreal. We always planned to take the train across Canada but we never got to it.

We did fly to Vancouver and then drove through the Rockies, including Alberta. We also went east and visited New Brunswick, Nova Scotia and Prince Edward Island. It was all very interesting and quite an adventure.

I was interested to know about your Manitoba Health Care. I think it will not be long before we have some charges brought in with our health care system. It is free at the point of use, but we do pay heavy taxes for it, but they are not enough now and a lot of the treatment is very expensive. Most people here do not pay for their prescriptions including everyone over sixty. Those who do pay pay a lot for prescriptions.

I do sympathise with that long journey and it must be very wearing. I can understand how hard it is for you and for your husband.

Thank you for your kind words about the thread. It is good to listen to anyone who has done this cancer journey as we can all speak from our different experiences.

I have to break now but I shall come back to you and talk about my own experience of chemotherapy.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello again, Nancy,

From my own experience of chemotherapy I did not find it that difficult and it was largely problem-free for the whole six months. I know that lots of women on here and other threads have had some awful problems.

I had my chemotherapy before my surgery because I had a large tumour 6cms+ and so it is usual to do the chemotherapy first to try to shrink the tumour to make it easier to do the surgery. My tumour seemed to appear from nowhere and was large. Even so, I delayed many months before starting treatment because I had so many doubts about the whole thing. This is not something I would advise other women to do. When first diagnosed, all I was told was that it was not hormonal and the prognosis was not good because they could not give me tamoxifen. There was no mention of triple negative to me and it was something I researched on my own.

The chemotherapy that I had was three months of two drugs combined, known as EC. This was epirubicin (Ellence) and cyclophosphamide (Cytoxan). I had them every three weeks for three months. My only side effect was the inevitable hair loss and feeling tired. I took the few pills they gave me to take for three days after each session and that was all I took from orthodox medicine.

In between the sessions I had a check up with the oncologist to see if the tumour was shrinking.

After three months on EC I then had three months of T, the T stands for a taxane drug, either paclitaxel (Taxol) or docetaxel (Taxotere). My oncologist chose Taxotere and said it was less harmful on the heart. It was while I was on Taxotere that I lost my eyelashes and eyebrows and had a bitter taste in my mouth when eating.

The tumour did shrink but it did not disappear. I carried on normally all the time. I made sure I ate healthily and kept optimistic. I made sure I had plenty of fluids as it is important to keep hydrated.

Throughout my treatment of breast cancer I took prescribed medication from a homoeopathic consultant, to whom my breast cancer consultant had referred me at my request. I stayed with her throughout my treatment and took oral Iscador for five years prescribed by her. This was on the NHS.

I had no problems with low red or white blood cells that a lot of women seem to have.

The long term effects that I do have are peripheral neuropathy in the feet which does not bother me that much and which came on after I had finished all my treatment. My oncologist said it was caused by the Taxotere. I also have lymphoedema in the right arm where I had the breast surgery. It is not that bad and does not affect me that much. Lymphoedema can often occur after any kind of surgery but it is common after breast surgery, especially if lymph nodes have been removed. Chemotherapy can also cause lymphoedema, especially the taxane drugs. Radiotherapy can also cause lymphoedema. Lymphoedema is caused by the three parts of breast cancer treatment damaging the lymph system, so that the lymph cannot flow properly.

I do hope this helps to inform you. There are other chemotherapy drugs but these are the most common. Other drugs are doxorubicin (Adriamycin) and fluorouracil (Adrucil) and the platins.

I can understand that you would need to be careful with chemotherapy drugs because all of them are toxic. If you are advised to have chemotherapy it is something about which you should have a serious discussion with your oncologist because of your osteoarthritis, diabetes and tendency to anaemia.

I think you were right to refuse chemotherapy, especially because of the diabetes. Looking at your details I see that you were stage 0 of DCIS first of all, and then IDC with a very small tumour two months later. I suppose that your medical team were probably thinking about chemotherapy because of the IDC triple negative status and the grade 3. Most TNBC are grade 3 but not all. I would probably have wanted just surgery and radiotherapy had I been in your shoes.

I do not know if you read my last post to Mary, but I was telling her about a book I had just read entitled Tripping over the truth. I was interested to read in there that research had discovered that people with diabetes and who were taking metformin did not get breast cancer. I was wondering whether you take it. I know it is for lowering blood glucose level. There have been a lot of discussions on bc.org on different threads about metformin and its use in preventing breast cancer and metastases. There are women on this forum that are taking it. Perhaps someone will post in to tell us.

That is about all for now but if I can help in any way please let me know.

Love.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

This is what I read in the Guardian on line today. I just do not know what to think.

https://www.theguardian.com/society/2018/may/02/je...

This is on top of other news this week about 2,500 patients getting various treatments (not cancer) that were not suitable for the patients and has all got to be done again.

Obviously I am not very impressed with all of this.

Best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

I do hope that the week is going well for you and that you are getting some nice weather wherever you are. it has been a dry but cold windy day here, but I have spent some time in the grounds and feel so much more energised for it.

Keep well and keep happy.

Best wishes.

Sylvia xxxx

Kathseward

hi Sylvia

Hope all goes s well with u as well and every one else. Winter is rapidly approaching here and things are cooling down rapidly! I feel very apprehensive this time of year because everything aches because if the cold weather. I’m try very hard not to get frightened and hyper vigilant and I know that I have always had aches and pains! I just seem to notice tgem more now. My gp is going to do some bloods RA and other autoimmune disorders which is a bit scary but other than achy joints I feel well. I know I had degenerative disc disease before diagnosis but the just notice it more now. My onco does not want to do bone scans tc because he feels they are not required but I

Hate this fear that’s always there. Sorry to be so down but it’s rainy and cold here so not help much! Think I need to hit the study books again to keep me occupied. Hope everyone is well

Cheers

Kath

53nancy

Hi Sylvia. Thank you for your note the other day. I haven’t gotten back to you as we are getting ready for town wide yard sales this Saturday. But I did want to let you know that I have been taking METFORMIN since 1990, so that would be about 28 years, for diabetes. I have read a lot about it as a possible help to cancer, but it could be for particular types of cancer. I have not heard at all since Monday about my scans, and the oncologist Told me that if I don’t hear anything by 14 May, I should give her a call. I do know from speaking to my nurse navigator that the oncologist did put a rush on those scans. unfortunately here in Manitoba that could be several weeks. Apart from a couple of days of feeling very down and scared, I have been keeping busy and I’m just playing it one day at a time. I am using supplements and essential oils that I hope will help in bringing down my markers- According to the oncologist, the CA15-3 shouldn’t be any higher than 25 and it was 30, but some reading I have done seems to indicate that thirt is within normal limits. I wonder what the standard is in great Britain.Have a great weekend

sylviaexmouthuk

Hello Nancy and Kath,

Thank you for your latest posts. I shall try to answer during the long weekend here. It is early Spring Bank Holiday on Monday and I hope to have more time.

Have a good weekend.

Love.

Sylvia xxxx

maryna8

Keukenhof tulip Gardens, breath-taking

Lovely weather here, the people and flowers appreciate!

53nancy

Mary, those flowers are beautiful. They cheer me up

lilyp6

Happy Sunday Everyone,

Yes Mary, breathtaking is the word for those flowers. It's great to see you out there enjoying yourself.

I've been gong to the dentist, dealing with the end of semester pressure at work, and seeing my surgeon for 2 bumps along my mastectomy scar. She's fairly sure that they are benign, but she took a biopsy of each to verify that. I'm lucky to have such overprotective doctors, but it's so hard to wait to find out. I wish there was a way to speed up that process.

I often wonder if it would be better to know nothing at all, and somehow skip the test anxiety. It sounds like the do far fewer tests in the UK, and I suspect the overall outcomes are the same. I would like to imagine this as a temporarily intense time, with a lot of relaxation and fun coming soon.

My plans are to leave from Ireland and Scotland in a couple of weeks, so I'll be prepping for that, along with prepping my food for the week. I've lost 13.5 lbs on Weight Watchers so far, (which is almost a Stone, Sylvia). It has been nice to wear clothes that were too tight before. The Instant Pot yogurt is incubating now, and I have to assemble fruit mixes to take to work. I'm going to keep moving today, but I wanted to pop in to say hello.

I hope everyone is relatively well today.

Pam