Calling all triple negative breast cancer patients in the UK
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Hello adagio,
It is nice to have you back with us.
I am not surprised that your friends and family have complaints about the NHS. I cannot see how it is going to survive. I heard on the news this week that some patients will have to wait three years to get their appointments.
It is sad that Canada is also having problems. When we were living there the equivalent of the NHS was superb. I do remember that different Provinces had slightly different arrangements, but we had no problem for the three years we lived in Montreal in Quebec and no problem for all the years we lived in Ottawa and then London, Ontario. In Ontario we had OHIP and it all worked fine. We had excellent GPs and their surgeries were never overloaded. I think quality of healthcare and quality of life depend on small populations. When we came back to England we were shocked with the NHS. It was all too busy.
Yesterday we heard on the news that there are now 37 million vehicles on our roads. The population is officially 65 million, but I think it is more like 80 million. There are cars and people everywhere.
That is about all for today. Take care.
Love.
Sylvia xxxx
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Hello Angie,
Thank you for your post. I think it is probably a good idea to have your wound healed before you start radiotherapy as it can be harsh on the skin. I think I waited about three or four weeks before starting radiotherapy after a mastectomy. You do need time to recover. I had six months of chemotherapy before surgery and had a three week wait in between.
You say you will be having six weeks of radiotherapy so that is quite a lot. You will need to take care of your skin. When will you be having the pre-radiotherapy mapping out of the area to have radiation? It is usually done on a prototype machine.
Take care and look after yourself.
Fond thoughts.
Sylvia xxxx
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Hi everybody
I really didn't mean to come back here with bad news. I have had really bad days during recent months. I was stuck between my love toward my brother, the deep and sisterly friendship between me and his wife and the tears of my nieces. My parent's were also so much under pressure that I had no way but to be their rock during all these events. Everything happened overnight and that was so shocking. We had lots of good memories all together.My husband and my brother's wife were like real brother and sister.
How many nights I couldn't sleep a wink as I saw tears in my brother's eyes and the deep sadness of my parents. We tried really hard to reconcile them but they turned all down.
I didn't feel like talking about all these with anybody. I forgot completely all about my own bc. Now I'm just waiting for a miracle. Tomorrow I will see my surgeon. Please pray for me.
Love
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Hi Everyone !
This is my first post here, and i just want to take a moment to commend everyone here for your braving with sharing your personal battle with breast cancer. This site has been very insightful and the most comforting.
My mother just got diagnosed with stage 1 grade triple negative breast cancer over 2 weeks ago. She had her lumpectomy last week which went very well. Her surgeon successfully removed her 2.3cm tumour which was localised, he checked her lymph nodes and they were all clear. With the grace of God he said this is the best outcome.
However due to the grade of her cancer he seems to be leaning towards chemo + radiation. I am little confused and I'm not understanding why she would need chemo she is technically cancer free since the tumour is removed.
I am not getting much information on triple negative breast cancer - apart from the fact its "the worst" BC to have. This has really taken a toll on my anxiety and fear of losing my mother. I feel so bad being negative because everyone here is genuinely so strong and positive and i can't seem to keep my composure even writing this post.
The thought of seeing my mother go through chemo is unbearable, as i watched two of my aunts go through it and i don't know if she's going to handle it.
Her doctor says there is a 30% chance or reassurance without chemo, and 20% percent chance of reassurance with chemo. Chemo is so aggressive so how does it only take away 10% percent.
I am so lost.
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Hi, Loveandlight
Welcome, and I am so sorry you have to find yourself here, and I see you are worried about your mother. It sounds as though she has found herself with a diagnosis of TNBC (triple negative breast cancer), with no nodes involved, and the doctor is recommending chemo and radiation. I think that is the norm for a TNBC diagnosis, because at his time there is no other treatment for it. If she had instead been diagnosed with E+P+ or HER2+ (estrogen receptive, progesterone receptive, or HER 2 receptive), there would have been other avenues of treatment. I know it does not seem like much of a difference in outcome between the 20% and 30%, we all wish it were better! As you read over the posts on this TNBC forum, you will notice, underneath the posts, that the great majority of people have done the chemo and radiation, and mostly the same drugs are used, or slightly different forms of these drugs. I won't lie and say the chemo is easy, but the effects vary from person to person. My advice is to get her to the best treatment center you can get to, and go from there.
Also, I noticed you said you watched 2 of your aunts go through the chemo treatments. Has your mother had the genetic testing that's available? That would be valuable information to have for your whole family.
Don't worry too much about TNBC being the "worst" cancer. Some of the other types have much longer treatment regimens and I'm not too sure there is a "worst". It's all a challenge, and your mother is very lucky to have you in her corner. You can all get through this.
I hope you will come back and let us know how things go. I'm sure Sylvia will be along to greet you soon, her diagnosis was 11 years ago.
Talk to you later, Mary
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Hello LoveAndLight88,
Welcome to our group. I was sorry to read about your mum. You are bound to be upset because this is all new and we all go into shock when first diagnosed. You need to be strong and positive for your mother at this time. She has already had surgery for a lumpectomy and got through that and she will be able to cope with the rest.
You must not focus on all the negative comments that you can read about breast cancer with triple negative receptor status. You do not say what kind of breast cancer your mother has. The most common is invasive ductal carcinoma (IDC) and this is used to describe breast cancer of no particular type. You do not mention the grade, either. Most TNBCs are grade 3, but some are grade 2. The fact that your mum is stage 1 is good, and also that no nodes are affected.
Because your mother's receptor status is non-hormonal, the hormonal drugs used for this are of no use. These drugs are not without problems and I always felt glad that they were of no use to me with my triple negative status. I always saw being negative as a positive thing. I am now over twelve years since diagnosis and I had a large tumour.
If that were me in your mum's situation, I would follow the advice of my oncologist. You and your mother need to have a good discussion with your oncologist. Chemotherapy is a systemic drug, meaning when it is injected it goes throughout the body killing off any stray cancer cells. The chemotherapy drugs are much the same, whatever your hormonal status. A common combination is epirubicin, cyclophosphomide, and a taxane drug, either docetaxel (Taxotere) or paclitaxel (Taxol). It must be your mum's decision. You will need to weigh up her general state of health etc.
as for radiotherapy, that will concentrate on a particular part of the body, the breast area, and, again, is used to mop up any stray cancer cells.
On this thread we are all proof that patients can get through this treatment. I think it is important to go through it with a positive attitude and deal with any side effects as they occur.
As Mary said, with two aunts in the family having had cancer, has your mother been offered genetic testing? This would be useful to see if she has the faulty BRCA1 or BRCA2 genes. Were you aunts positive for these?
It is not true that your mother is technically cancer free, just because the tumour has been removed. There may be stray cells elsewhere.
You do not need to fill your head with lots of information. All you need to know is how breast cancer is treated and it is basically surgery, chemotherapy and radiotherapy. All breast cancer is a serious disease, no matter what the hormonal status is. Please try to be positive for your mother's sake. Give yourself time to recover from the shock and then do everything in your power to reassure your mother.
On this thread we shall try to do everything we can to help you and your mother. Come here and express all your fears and anxiety and then be there, strong and positive, for your mother.
A final thing about chemotherapy. The women here all seem to agree that it is easier to get through if you have your infusions weekly, rather than three weekly.
Which country are you from and how old is your mother?
Sending you fond thoughts.
Sylvia xxxx
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Hello Hanieh,
I just wanted to say that I shall be thinking of you today as you see your surgeon. Let us know how you get on.
Love.
Sylvia xxxx
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Sylvia, I have been in and out today, checked and read your post and I apologize for saying you were 11 years past diagnosis. I already forgot I have congratulated you on 12 years!
I will be back later with more.
Love, Mary
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Hi Sylvia and Mary,
I cannot thank you enough for your kind words and all this information. Sylvia my mother has grade 3 as you said, but I'm not sure about the type though.
I have one aunt who is currently finishing chemo - she was stage 2 not sure of her grade, and my other aunt passed away 10 years ago after being in the clear for a few months after her mastectomy and chemo+radio. I would like to think medicine has advanced in the last 10 years. This is where my fear is coming from, I had an aunt who did all the right procedures and she's not here today.
As for the gene test - her surgeon actually mentioned on thursday it would be worth testing. May i ask what benefits she would get from testing for it at this point ?
Best
X
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Sylvia,
We are in London and my mother is 61 years young !
I am seeing how chemo seems to be the best option for her "stray cells" . Has anyone ever looked into alternative medicine?
My parents are very big on Homeopathic medicine, I have already bought her b17 vitamins, CBD oils as i heard its good for appetite and nausea/pain. Are all these gimmicks but do they work with cancer ?
I have also found a very respect dr in NYC who works mainly with cancer patients she uses sort of a localised infrared light ( onnestsu ) to target cancer, she seems to have a very high success rate. I still have to look into more I'm just trying to have as many options as i can!
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Hello you all.
Well I was very very tired for a lot of days. This two cancers are a lot.for me.
I will have the Tyrone surgery next Tuesday at noon. I can change the clinical this time will be in Imbanaco. I hope everything goes ok.
In this clinical I had an interview with the anesthesiologists and with the nurse. Last time I only talk with the nurse and she didn't care about I was taking celecoxib.
Here in Colombia every clinical use his own protocol even when the law says you have to have an interview with the anesthesiologists before the surgery.
I just been a year I didn't go to work. I had been really sedentary lifestyles. Today I did ten minutes of elliptical yesterday I did only 5.minutes. I hope I can get again a good physical condition.
This is a really crazy country. A big part of.the people live in extreme poverty and the parliament has been fighting because of the fARC. And do nothing about the poverty and the big corruption that eat all of.our sources. A lot of the man who are in the parliament are in investigating about corruption. And the notices in the tv talk more about the FARC than the big corruption.
I hope.everyone of you is getting bette soon and take the treatment with out any suffering.
I'm really sorry about Hannah I think our country's are really emotionally and we.lost our point of.view of our health. So I hope she take with all the strongest hers treatment really soon to take out this new cancer.
Abrazos
Marias
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Hello Marias,
Thank you for your post. I am not surprised that you have been tired for many days. It is difficult enough having to go through breast cancer. It must be so much more difficult having to cope with thyroid cancer. I do hope that everything goes well for you on Tuesday. We shall all be thinking of you and waiting to hear from you to tell us that the surgery has gone well and that you are fine.
I saw from the internet that Imbanaco is a medical centre. I think it is very good that at this clinic you had an interview with the anaesthetist as well as with the nurse. It is so important to be well informed before having any treatment.
It must be very difficult for you not going to work. Going through breast cancer treatment is very tiring and you need to rest a lot, so it has probably been better for you not to be working. I do hope that you will start to recover after the thyroid surgery and that you will get back to work.
You need to take care of yourself and have a healthy lifestyle. On the thread we all know that we need to follow a rainbow diet/Mediterranean diet and keep away from junk and processed foods. We know the importance of fruit and vegetables, nuts, seeds, beans and pulses. We know to stay away from dairy products and too much meat. We are told to eat oily fish, such as wild salmon for omega-3. We know that sugar is off the menu along with alcohol. We can at least be in control of what we eat.
I know that you like walking, so when you can have a gentle walk and gradually build up your exercise. You do not have to do complicated exercises. Are you doing any swimming? I know that you like to do this.
I was interested in what you had to say about your country, Colombia. How does the health service work? Do you get help from the state when you are ill?
I have heard a lot about the FARC, but I thought that this organisation had made peace now. It seems that in all countries there is corruption and abuse by those in power and that the rich do not care about the poor. The level of poverty may be relative, but it is still there. It is difficult to find people in power to fight to get rid of poverty and to promote justice, equality and liberty.
In my own country there are lots of poor people and we have millions of children living in poverty and yet we keep being told that we are the fifth richest country in the world. At the moment we have a big scandal going on about tax havens where the richest people hide their wealth so that they do not pay tax. These are very rich people who could help their country by paying their taxes, but they must be devoid of a moral conscience. What do they want with all that money? Death will come to them like all of us and they cannot take it with them when they go! Our government should do something about these tax havens, but they are not interested. We also have a scandal going on in Parliament about sexual misconduct.
That is about all for today.
Abrazos
Sylvia xxxx
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Hello LoveAndLight88,
Thank you for letting us know that you are in London and that your mother is 61.
I was interested also that you were asking about alternative medicine.
I think we are all interested in other ways of helping ourselves. You might like to sign up to the email from Chris Woollams, founder of Cancer Active, which is a charity in this country that believes in integrative treatment. They have a big website on line. They have a magazine called icon, to which you can subscribe. I first discovered this magazine at my hospital when I was going through diagnosis of breast cancer. I was very reluctant to have orthodox treatment and I delayed my treatment for about three months while I looked into other possible ways of treating my breast cancer. In the early posts on the thread I posted quite a bit about this, but I would not advise other patients to delay their treatment.
I read my first icon magazine and read from start to finish a book by Dr Rosy Daniels, The Cancer Directory. That was in 2005 and the book was newly published. This book enabled me to make up a list of questions to ask my breast cancer consultant. From the reading of the magazine and the book, I learned of a herbalist, Gerald Green, and contacted him. He was quite well known and lived in Sussex. He is now deceased but someone else is in charge. Through him I took wormwood (artemisia) and astragalus, which he prescribed. I also picked up a few tips about diet, but I was eating healthily anyway.
In the meantime, I spoke to my breast cancer consultant and she referred me to the Royal Bristol Homoeopathic Hospital to see a breast cancer consultant who practised homoeopathy. She told me I needed to have the orthodox treatment, but that I could be a patient with her throughout my orthodox breast cancer treatment and that she would give me homoeopathic treatment at every stage. I stayed with her for five years.
I need to take a break now, but I shall resume later and tell you more about all this.
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia
I don't think the NHS or other Healthcare systems of the world will improve much, they will only get more cumbersome as they get more overloaded, barring a miracle of some sort. I was reading an article about Medical experts here talking about why our healthcare system doesn't seem to be working very well for all, and they made a pie chart and the main problem, they say, is higher prices. They don't delve into the causes of inflation or what to do about it except to say that unnecessary medical procedures need to be curtailed. Nobody seems to have a good answer.
I also skimmed an article this morning saying that Brexit will probably not happen before the end of the year (!) and that Theresa May is losing more popularity among the MPs and it sounds like she is hanging on by her fingernails.
I hope your hospital gets rid of its' norovirus soon, that is a problem. When I was in the hospital with neutropenia, my GP told me he would have me leave as soon as possible because it's the worst place for someone with lowered immune function.
Now that I am wearing longer sleeves again because of the colder weather, I can tell sometimes that my right arm feels the tiniest bit tighter in some sleeves than does the left. Then sometimes I think it's my imagination. It makes me wonder what having surgery on my shoulder would do to me if my lymphatic system isn't up to snuff. I have been reading things about stem cell therapy to repair rotator cuff, and wondering if that would be an option for me.
I will talk to you again soon, suddenly there are lots of postings here again.
Love, Mary
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Hi, Angie
I just wanted to say that I didn't have radiation at all, at the time I finished chemo I was having so much arm, shoulder and back pain that they decided the effects would not be worth the risk of further pain. I don't think delaying radiation will harm you, have you asked the docs what their reasoning is?
I am glad your open wound is healing well, it's very likely that's why they are waiting to do radiation.
Don't worry too much, and take care of yourself!
Mary
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Hi, Hanieh
Again, I am so sorry about the troubles of your family. I think what you have to realize is that there is nothing you can do about the actions of other people, you can only deal with the repercussions. Sad to say, it will probably be very difficult to maintain a relationship with your SIL, but hopefully you can keep up a good relationship with your nieces.
Now you will have to get back to taking care of yourself, what did the doctor say during your appointment? Sylvia is right, it's better to have a local recurrence than a distant one.
Thinking of you, Hannah, and I just said another prayer for you.
Love, Mary
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Hi, Marias
I imagine you must be so tired, and also you must be very strong to be getting through all this, it's a lot. I do hope your thyroid surgery is a great success. I do know people who have made very good recovery from thyroid cancer, it seems to be a cancer that is quite curable when caught early.
I am also more sedentary than I was before the cancer and chemo. I cannot walk as much as I did before, and I have much more pain in more places. I hope you can get back to swimming after your incisions heal.
In every country and government there is corruption, the people at the top seem only concerned with themselves and their friends, and they are all very comfortable. If only they had to live as some of their poorest constituents do for a while.
I will be thinking of you Tuesday, Marias. Please let us know how you are when you feel up to it.
Talk to you soon, love,
Mary
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Hi Sylvia !
Thank you SO much for all this information honestly I really appreciate it - I will look into everything you suggested.
The more research I do , I feel the orthodox treatment might be the only way to help mum as i read her Ki 67 is 88% ( most daunting thing i read today )
I am confused though, because if there is high rate of reassurance, wouldn't the doctor have suggested a mastectomy ? he was very happy for her to only have a lumpectomy.
Xx
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Hello LoveAndLight88,
I shall try to continue with my saga. I was surprised that my orthodox breast cancer consultant referred me to the breast cancer homoeopathic consultant, but apparently she did that sort of thing. I had a long appointment at Bristol and I went there regularly for consultations for five years, and the consultant there always sent a report back to my breast cancer consultant in Exeter. While I was waiting to make up my mind about orthodox treatment, I was given homoeopathic anti-cancer powders to take. I was still with the herbalist, Gerald Green and stayed with him until October of 2005 when I decided I would have the orthodox treatment. He dealt only with patients who had not had orthodox treatment.
I had my first chemotherapy treatment in November 2005 and this lasted until the end of April 2006. During that time I took oral Iscador prescribed by the homoeopath consultant and I continued to take it for five years. I had no real problems during my chemotherapy. There was the inevitable hair loss after the first session, but I did not have the ice cap to prevent it. My oncologist was not in favour of it as she was afraid of infection. I was somewhat fatigued but largely carried on as normal. I had no nausea or sickness, no weight gain, nor weight loss. I had no vomiting and no problems with low white or red blood cells.
After six months of chemotherapy I had a mastectomy of the right breast on May 17th, and was in the hospital for five days until the post surgery drains were clear. I took homoeopathic powders during this time, if I remember correctly, prescribed by the Bristol consultant and I would have been taking the oral Iscador.
After surgery I was told I had an excellent pathology report and there was no evidence of disease.
I think I started radiotherapy about mid June and I had three weeks of it. The routine is five days a week with a rest at weekends. Again, I took homoeopathic powders during this time and had no real problems with the treatment.
It was only after finishing radiotherapy that I noticed the soles of my feet did not seem right. I mentioned this to the oncologist and she said it was caused by the taxane chemotherapy drug, docetaxel (Taxotere). I still have this problem, peripheral neuropathy, but it does not bother me that much.
I do not think that I would have survived my breast cancer without the orthodox treatment. My homoeopathic treatment was considered a success and the consultant felt I could be discharged after five years. Who knows how big a part homoeopathy played in my treatment, but it did not seem to do me any harm.
I did have one consultation with a well known private nutritionist, again in Bristol. A lot of what she advised as to healthy, anti-cancer eating, I was already doing. I did add on her recommendation green tea and bitter apricot kernels (B-17). I have continued to drink green tea and really love it, and have continued eating the bitter apricot kernels for over twelve years now, despite some controversy about them. I am the sort of person who makes up my own mind about what I will and will not do.
I stay away from dairy products, alcohol and sugar, and find it easy to do so.
I do not know much about CBD and whether it has anti-cancer benefits. I have seen it in the local natural food stores here. It is very expensive. I asked about it and was told it is very good at relieving MS and Parkinson's disease.
Back in 2005, again through icon and Cancer Active, I did learn about light and treatment of cancerous tumours. There is a doctor in Harley Street and Hampshire who does all this, but, again, it is very expensive. I did phone him all that time ago, but he said it was only effective for small tumours. Mine was large.
There you have it, that is my story. I think patients have to make up their own mind and do what they think is best for their bodies.
Another thing I remember is reading about the Penny Brohn Centre in Bristol. I remember my breast cancer consultant telling me about this centre and how they were treating breast cancer with the immune system booster, Pycnogenol. Off and on I have taken this over the years and from time to time I do take astragalus supplements, another immune booster.
I do hope this will be of some help.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I have just read your post to me. I shall answer tomorrow, as I like to put a lot of thought into everything and I have spent a long time trying to help LoveAndLight today.
Thank you for being such a strong poster.
Love.
Sylvia xxxx
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Hello LoveAndLight88,
Thank you for your latest post. Try not to worry about those numbers. I am not sure how important they are. No one in my medical team ever mentioned them to me and I think I had the dream team. I had three dedicated women, my breast care cancer nurse, my oncologist, who was also in charge of my radiotherapy as well as my chemotherapy, and my breast cancer consultant surgeon, who had star quality. I saw the consultant recently about my lymphoedema, more than twelve years on, and she was the same impressive woman.
Your mother's consultant probably decided on a lumpectomy because the tumour was small. I think a lumpectomy is done and then if there are not clear margins a second one is done. After that, if there is any doubt, a mastectomy is recommended.
A mastectomy is recommended for larger tumours and often in this case chemotherapy is carried out before surgery to shrink the tumour and make surgery easier. This is known as neoadjuvant chemotherapy.
Take care and try not to worry.
Love.
Sylvia xxxx
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Hello Sylvia. Here the health became a "good business" . In 2001.the health became private before that the healthcare was in the hand of the state. The rich people can pay the private service and the other goes to the "seguros sociales"
Now is a lot of health company which didn't offer a good service to the people so they can not get the treatment on time. This health company are really bad and they are intervened by the State then it changes the name but the capitalist partners remain the same and the services they offer are getting worse.
I have the health of the university so I can say I privileged.
In the parliament are fighting for the law that the farc need to be under. This law need all the group's who were in war talk with the true about what they did. Here are the paramilitary this group was founded with the help of Alvaro Uribe. They kill a lot of "campesinos*" to take the land to their friends. They don't want the country knows about the bad things they do. So they don't want the JEP. Across the sing of the parliament.
But a lot of this parliamentary are involved in this killing and take away of the campesinos a lot of land and money for the state
I hope you get better of your arm really soon. Did you read about the Nordic walking it may you and your arm in movement.
I hope you can understand my English.
I did wash on BBCa a film about Martin Luther and Thomas muntzer. Really interesting.
https://www.bbc.co.uk/iplayer/episode/b09b5154/ref...
Abrazos
Marias
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Happy Sunday Everyone,
Sylvia, You are doing such a great job keeping up with all of the responses and help you provide here. I wanted to get back to you about something simpler. My favorite acts in the 80's were considered "New Wave," bands, including The Beat, ("The English Beat" in the US), The Smiths, The Cure, Duran Duran, Wham/George Michael, Tears for Fears, The Human League, Adam Ant, and the Thompson Twins. I was also a big David Bowie fan, but his career was not really contained within that genre.
Angelica25, Thanks for sharing your acupuncture treatment experience for neuropathy, especially the fact that you have no issues with treatment on your surgical arm. I'm glad to hear that you thought that it helped.
Mary, Thanks so much for your good wishes about my latest tests. I see that your acupuncturist avoids your right/surgical arm. I wonder if we'll ever know for sure when we need to avoid these things. Like I said before, I got different advice from every doctor I spoke with about the proper precautions to take. I can imagine very well that the 20 minutes to be left alone to breathe, sleep, or meditate, are so valuable. I get very similar benefits from my yoga classes.
I shouldn't say we don't have any bookstores left, because we still have the best one of all, The Last Bookstore, in downtown LA: http://lastbookstorela.com/.
Adagio, Thank you, too. Yes, not knowing the results of my CT scan was like not being able to breathe. I've cultivated a lot of anti-stress tools, but even while practicing them, it was very hard to put that out of my mind.
Hanieh, It's good to have you back, though I'm so sorry that you have been going through so much, and then got such bad news. I hope you can share the outcome of your appointment, and the next steps. I tell myself that there is so much that can be done for us, and that I am in good hands. The thing that helps me most is to try to be grateful that they can find these things and treat us, rather than me not knowing, and therefore not getting treatment. I also understand that it's awful to find yourself back in the world of treatment, no matter how grateful for it you may be.
Marias, I'll be thinking of you and wishing you the best possible outcome for your surgery on Tuesday. I hope you can give us an update when you're ready. A woman I overheard early in my treatment was telling another, to "never, never give up," I assume because she had survived a very serious health scare. I still remember that when I'm struggling, and I see that you are not giving up.
Loveandlight88, You found a great place on behalf of your mother here. There is plenty of great info and support.
Sending strength and love,
Pam
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Pam - This has to be hands down the most comforting and informative forum i have come across ! so much love and support
Sylvia - what a very small world, my mother knew of Gerald Green and spoke so highly of his work! I told her your experience with him and she is very keen to get in touch with whoever is running his ship now. I want to get a hold of all the homeopathic herbs you have taken and present it to our homeopath here in london and see what he thinks.
Apricots are out of season, but i managed to drive out to a farmers market and got my hands on racks of african apricots, the fresher the better - i do believe in the power of b17 and apricot kernels i think do play a major role in prevention. No harm in consuming them in moderation i say. The b17 kernel capsules were too strong and made mum feel very nauseous and lethargic for days. So fresh fruit kernel it is
Wormwood and Iscador are next on my shopping list tomorrow morning !
Hope everyone is having a blessed sunday
Xx
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Hello LoveAndLight88,
I was interested to know that your mother knew of Gerald Green. I think he was very well known. I spoke to him on the phone, had a couple of letters from him and a little booklet on nutrition. He used to send me the artemisinin (wormwood) and astragalus through the post.
If I were you I would only do things through a homoeopathic practitioner. The homoeopathic consultant I had in Bristol was Dr Elizabeth Thompson and I got things on prescription through her. There was a homoeopathic hospital in London, but I am not sure what name it has now. As for oral Iscador, I think that needs to be prescribed as well. The nutritionist I saw was Dr Nicola Hembry. You can probably find all this on line. Please remember that both doctors told me I needed to have the orthodox treatment.
You really must talk to your mother's consultants about chemotherapy and radiotherapy.
I was a bit confused about what you said about fresh apricots. Yes, apricots are a very healthy fruit, but what I was taking are Bitter Apricot Kernels. You buy them in tubs or packets. I have been buying Creative Nature Bitter Apricot Kernels on line from Amazon and they come from the Himalayas. I am still taking them every day. It is best to eat a few a day and after meals, not on an empty stomach. I do not know whether the prevent anything or not. I have read a lot about them and think they cannot do any harm. The same goes for green tea.
I think these things are good adjuncts.
Please make sure you listen to your medical team.
Thank you so much for your very kind words in your PM to me. All of us on the thread will do all that we can to support you and your mum through all this.
Fond thoughts.
Sylvia xxxx
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Hello Pam, Marias and Mary,
I wanted to say thank you for your latest posts. They are always interesting and I learn a lot.
I have had a very busy day today and I have just not had the time to reply. I am going to do my very best to reply tomorrow.
To Hanieh, please let us know what is going on with your treatment.
Hello to adagio, Val, Rhonda, Kathsward, Lou. 4EverStrong, Galway, and 53Nancy. If I have forgotten anyone, pop in and let us all know how you are.
Hello Kath, how is your sister getting on and how are you coping?
Best wishes to all.
Sylvia xxxx
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Hi Mary - Thanks for sharing your experience. Because I had a lumpectomy my docs want me to have radiation. Ideally 3 to 6 weeks after chemo is optimal, and after nine weeks, the benefits decrease significantly. I'm nervous because today I am 7 weeks pcr. I'm praying that they will map this Friday and starts rads next week. The docs said they want to wait for the wound to completely heal because it may open up during radiation
Hannieh - I'm making dua for you and hope that you get a game plan soon
Marias - Nice to hear from you. I miss your beautiful pictures that you post. I hope next Tuesday goes well for you. Keep up with your elliptical machine, and stay motivated.
Pam - I just had my second acupuncture this week, and the tingling in my toes is better, it's more intermittent than constant.
Sylvia - I do hope your arm is doing better.
Love - wishing the best for your mom
Angie
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Hello Mary,
I agree with you about the health systems. Nothing seems to work and they are too bureaucratic. I think as I have said before that they are underfunded but there is a lot of waste with money as well. I think neither the medics nor the patients treat their health systems with responsibility. Too much medication is being given out and there are far too many scans.
I am studying intently what is going on in my own case with lymphoedema and getting back into the system. I have just received a letter from the lymphoedema clinic to inform me that I have an appointment on December 5th at 2 pm. That letter came last Friday. On Saturday another letter arrived, exactly the same one as I had received the day before. That happened also with letters about my appointment to see the consultant. I had five letters about that appointment and four were all identical. This is such a waste. Imagine this going on with the millions of patients. In addition, some kind of agency is being used to phone me to tell me I have an appointment. I think that happened twice and I have been informed it will happen again. I think this is because patients are not turning up for their appointment out of forgetfulness!!! I think these patients should be fined. When I go for my appointment I doubt it will be on time and I shall have my arm measured and be told wait for another appointment. This is not bad when my information tells me that with lymphoedema. "Time is of the essence. Wasted time doth waste the body." This wisdom comes from an article in icon magazine of 2004.
In the meantime, my arm is not changing much, but I have been concerned over the past few days that it becomes pink on the palm side and that intermittently both my hands go blood red. This morning I phoned the surgery to ask to see my GP and was told that she is fully booked for some time ahead. I told the receptionist my problem and she said I could not see my GP but would have to wait to have a phone call from the duty doctor and take it from there. I phoned at 9:30 am and I am still waiting for a call.
The NHS is a very expensive organisation to run and it needs a complete overhaul.
As for Brexit, it is definitely not going to happen this year. Officially we are supposed to be out of the EU on March 31st 2019, but they have now added a transition period that could last for years. I think we should walk away from those unelected arrogant nasty officials in Europe. I think no deal is better than a bad deal. We should have walked away the day after the referendum. The EU officials just want money out of us. I think the EU is going nowhere and I am horrified at the latest news about their plan to form an EU army. I think the gang of men that form the present Conservative government are taking advantage of Theresa May because she is a woman.
I think with reference to lymphoedema that we all have a bit of swelling where we had the surgery, but it is not that noticeable.
I would be very wary of any surgery after breast cancer treatment. We have to remember that we have a faulty lymphatic system and that it can easily be set off in a way that has happened to me. I am quite fed up with it.
That is all for now. We are a busy little group here and it is quite difficult to keep up.
Love.
Sylvia xxxx
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Hello Marias,
I do hope all is going well with you today.
I am glad that you have health coverage through the university. It seems that whether you have a private system based on insurance or a state one, based on taxation, neither seems to work in the end. In the UK there are just too many people for the system to be able to cope. People need to look after themselves more and stop treating their bodies badly. I saw that in the UK we have the worst obesity problem of the whole of Europe. There is too much junk food around. The food industry has a lot to answer for. They cannot stop adulterating food.
I think with the health system it is the drug companies that are making all the money and are encouraging doctors to medicate whole swathes of the population. People find it easier to pop a pill than to eat some fruit and vegetables. Drug companies are creating expensive pills that just treat the symptoms. They do not get to the cause of a disease. There is no money in that.
I think all countries waste money on war. War solves no problems, just creates more wars. I do hope your country will sort itself out, but it is a very hard struggle for the masses of people to defeat the establishment. Land belongs to all of us and the big bullies have claimed ownership of it in order to exploit the rest of us.
I do hope that in your country a peace and reconciliation will take place.
We do not get much news about your country here in the UK, so keep telling us all about it. Do you get much news about the UK? At the moment there is nothing but scandal.
Yes I did read about the Nordic walking. It was interesting. At the moment I am concentrating on doing the manual lymphatic massage to keep the lymph moving and exercises that involve raising the arm high.
Thank you for the link about the BBC film.
Take care.
Abrazos.
Sylvia xxxx
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Hello Pam,
Thank you for your post. I was interested in what you had to say about the bands that you like. I know some of those, but I am older than you are and had switched off a lot of music by then. I do remember that Duran Duran was very popular and of course George Michael and David Bowie were both very famous. I grew up with Elvis Presley, Roy Orbison, Buddy Holly and the Comets.
There seems to be a discussion going on about whether we should have injections in the arm of the side where we had surgery and radiotherapy. I would be very cautious about having anything done in the arm of the operated side. I was told definitely not to use my right arm for injections, blood pressure or anything else. I would certainly not risk trying it. We have to remember that where we have had surgery and radiotherapy we have an impaired lymph system that is not flowing properly through our system.
When I was first diagnosed and went to a pre chemotherapy treatment clinic, I was told not to have any injections during chemotherapy because of the fear of infection. Remember, I had chemotherapy before surgery. I told the nurses I was having Iscador and I had to have it orally, because I was told not to go the injection route. After surgery with lymph node removal I was told never to use the right arm for any injections etc. It is my own personal feeling but I would not have acupuncture in my right arm. I do not believe there is a cure for neuropathy in the feet. My oncologist told me there is not. My GP told me there is not, two podiatrists have told me there is not. Fortunately my neuropathy in the feet does not bother me too much.
I did have a bit of lymphoedema after surgery and radiotherapy. I did not notice it that much, but I had a bit of puffiness in the hand a little swelling on the upper arm. I had two sessions at the lymphoedema clinic and some physiotherapy. After that I have never had a problem with lymphoedema until recently. It could be due to the flu jab I had in October, after twelve years of not having one. It may have had a reaction on my lymph system. It was either that or straining it vacuuming. I am now concerned about the long wait for treatment.
I have just received the latest email from Chris Woollams from Cancer Active. It looks most interesting. The main heading is "New findings about sugar and cancer and a lot more 'latest news' items". I think you may find it interesting. Have you signed up for his email?
The link is:
email: chrismeanshealth@gmail.com
web: http://www.chriswoollamshealthwatch.com
I hope you are having a good week.
Love.
Sylvia xxxx
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