Calling all triple negative breast cancer patients in the UK
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Sylvia, Hanieh, anyone else out there,
The flowers are so beautiful. Here the very same type of flower is trying to stick it's head up but then it gets cold again. But it is still only February.
I have been rather down in the dumps lately. Since last week when I became so weak in the mall, and heart problems were ruled out when I went to the hospital to have tests, I have been realizing that my neuropathy has just gotten a lot worse. It has gone from just feet and hands to legs and arms as well, not even sure what else. Yesterday I had a man here working and putting finishing touches on my remodel. He was here all day, and I stayed busy cleaning up after him, fixing him lunch etc. By evening I was exhausted, my legs were weak and tingly and my feet were burning badly. The night before that I was awakened at 2 AM by aching pain in my legs, just because I had been at the farm that day and got some light exercise. I just can't take it all in just yet. It seems that after everything I have been through the last couple of years I am not going to be allowed to recover much joy of life. I have always loved being out walking, that seems unreachable now in any extended way. The really scary part is that it seems to get worse with every day. Yesterday I made an appt. with a nurse practitioner at a neurology clinic for next week. It is a 6-month wait to see a neurology doctor. Not sure what the point is, I dread being told I need the drugs I will probably be offered. I guess I am grasping at straws.
Sylvia, I think you have been blessed. You seem to have minimal side effects from your treatment. I know your feet bother you. When it was only my feet that bothered me I felt okay with it, I felt I could handle it. This is so different.
I am trying to find my optimism back.
Mary
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Hi Sylvia and Mary
Mary I'm so sorry to hear you're going through so much problems. It's not fair. Really all this pain and anxiety is not fair. I pray deep in my heart you get better fast and don't need any medication. Let's repeat some positive ideas again and again that we can be all completely healthy again.
My cold has goftten much better. But there is a pressure that I feel at the back of my head that goes to into my ears. Today it made teaching really hard. I feel scared. I don't know what it is for. I saw a general practitioner about it and she said it may be because of ear infection and prescribed some antibiotics. I hope she is right. I keep telling myself it's again nothing serious. Again waiting......
Love
Hanieh
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Hi Sylvia and Mary
Mary I'm so sorry to hear you're going through so much problems. It's not fair. Really all this pain and anxiety is not fair. I pray deep in my heart you get better fast and don't need any medication. Let's repeat some positive ideas again and again that we can be all completely healthy again.
My cold has goftten much better. But there is a pressure that I feel at the back of my head that goes to into my ears. Today it made teaching really hard. I feel scared. I don't know what it is for. I saw a general practitioner about it and she said it may be because of ear infection and prescribed some antibiotics. I hope she is right. I keep telling myself it's again nothing serious. Again waiting......
Love
Hanieh
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Hello Hanieh,
I am trying to finish replying to your previous post, when you mentioned the name of your surgeon. I shall probably have a look at his name at the weekend when I have more time. I was interested to know that he strongly opposes mastectomy unless there is no choice and that he prefers breast conserving surgery. I can understand that because having a breast removed is traumatic as it represents such an important part of a woman's body and is part of her femininity. I know that women can have breast reconstruction but I feel that I would not have liked that and involves a lot of surgery and it can go wrong.
I was reading somewhere else that a consultant thought that breast conserving surgery was less traumatic and demanding than a mastectomy. I can only speak for myself and having a mastectomy because that is what I experienced. My breast cancer consultant surgeon told me that a mastectomy was not considered major surgery, unlike a hysterectomy or hip replacement surgery. She told me a mastectomy took about 45 minutes. I had no pain afterwards and quickly adapted to not having a right breast. I think the patient should choose what type of surgery she wants.
I am wondering what is going on with you and Mary with the problems in your legs and ankles. If I were you I would get to the bottom of this and find out exactly what is wrong and whether it is neuropathy. We all know now that the taxane drugs cause neuropathy, but you, Hanieh, did not have any taxane drugs with your chemotherapy. Why not see your GP and if you cannot get satisfaction ask for a referral?
Did you choose to study German and if so what made you do so? At school I studied French, Spanish and Latin, and then I did French Honours at university with Spanish as my second language. It is all getting a bit rusty now!
Fond thoughts.
Sylvia xxxx
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Hello Mary,
It was nice to hear from you, but I was so sorry to read that you are feeling rather down in the dumps. Roll on spring and summer, which may help to lift your spirits.
I am concerned about the problems you are experiencing in your legs and arms, as well as your feet and hands. Have you been definitely diagnosed with chemotherapy induced peripheral neuropathy? If you have not, get yourself tested as it is a simple test.
It sounds as though you had a busy day yesterday and you probably overdid things. Have you now finished all the work on your kitchen? After all that work I am not surprised that you were exhausted. Make sure you have time for relaxation.
You have to get to the bottom of what is causing all these symptoms in your feet, legs, arms and hands. Could it be any medication you are taking or have taken? Could this be something like arthritis, fibromyalgia or rheumatism? There are so many things that could be causing these pains. Remember, also, that it is early days for you since being diagnosed with breast cancer. Recovery can take years. If I were you I would try other ways of finding out what is wrong. Six months is a long time to wait to see a neurology doctor. Would seeing a rheumatologist be of any use?
I shall try to have a look through my medical book over the weekend to see what I can find. Do you think massage would help? I keep reading how good yoga is, but I do not feel I would be any good at it. I was astonished to see the photograph of a 100 year old woman in one of the newspapers today. She looks so fit and has been doing yoga for years, 30 years in fact. She says she is a yoga addict and that it has helped cure aches and pains. She also said that she used to have trouble from a slipped disc and that yoga had helped her to cope with it. She said that yoga had given her good posture, balance, concentration, flexibility and stamina. We could all certainly do with all of those things. She took up yoga at age 67.
The article about her life is very interesting. The link is:
http://www.express.co.uk/news/uk/646767/Jean-Dawson-grandmother-practising-yoga-100-years-old
There is another article in the same paper, the Daily Express: Wonder drug hope in war on cancer. I was appalled to read as part of this article that 800 new victims a day are being diagnosed with cancer in England. These two articles are by Giles Sheldrick. I shall try to write more details about this over the next few days. The link is:
That is all for this evening. Take care, Mary, and tell yourself you will get to the bottom of all these aches and pains. I shall talk again soon to you and Hanieh and hope that our good friends adagio and Amanda will join in.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia and all.
Sorry I haven't posted for a while, I have dropped by a few times and read but I have been feeling so tired that I didn't feel too positive and didn't want to be a downer! I have been back at work full time for 4 weeks and it has been a huge adjustment. I have managed to exercise regularly until this week when I just felt so shattered physically that all I could do was collapse on the couch. I also wanted to let Mary know that I have very similar symptoms, leg weakness and shooting pains. Mine are in my arms, shoulders sometimes, and joints. My leg weakness makes me feel unsteady sometimes and almost fragile. This is despite being quite fit as I have been walking around 50 km a week. I really think it must be the taxane chemo. My chemo finished mid June 2015. I am seeing my oncologist tomorrow so I will ask him about it.
I noticed you mentioned Yoga, Sylvia. I have started restorative Yoga which is a mixture of gentle relaxation exercises and stretches and I certainly feel better after it. My biggest challenge now is fitting in time for things that are good for me like exercise and not let work consume me. I am really wondering about work now. It is busy and quite stressful. I think to myself, so I went through all this treatment and trauma to go back to more stress? Hopefully work will settle down as I readjust.
Sylvia, I loved the photo of the flowers; you are entering Spring while here in Melbourne we are moving into Autumn. We will still get hot weather though through March. It was 39 just a couple of days ago.
All the best everyone
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Yet another sunrise!
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Hello Joliel,
Thank you for your post. It was very nice to hear from you, but I was sorry to read that you are experiencing these problems with your legs etc. and finding it difficult to adjust to work. I shall write more later as I am getting ready to go to a meeting of the directors in the apartment complex where I live. I am a volunteer director and it is like a full time job without the pay!! What do you do in the way of work? Stress is not what you want and please do not overdo the exercise. It is early days yet since your treatment finished and it takes a long time to recover from all this.
It is definitely the taxanes, either docetaxel (Taxotere) or paclitaxel (Taxol) that is the cause of neuropathy, according to what my oncologist told me in the past. You do need to talk to your oncologist and get a definite diagnosis and make sure it is not something else. You might like to ask her what it is in the taxanes that causes this neuropathy and whether it is just in the feet and hands, or can affect elsewhere in the body.
I shall write later on. Hang in there, take things slowly and let your body recover from all the trauma and toxicity it has been through.
Fond thoughts.
Sylvia xxxx
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Sylvia, Hanieh, Joliel
Thanks for replies, I am going to try to get to the bottom of things; my fear though, from what I have read, is that there is precious little I can do about any of this except pray it goes away.
If you go to the front page of this very website, breastcancer.org, and search neuropathy, you will find info that indeed states that CIPN (chemo-induced peripheral neuropathy), can be not only in feet and hands, but also legs and arms. Not to mention other places, which I won't go into right now because it's too scary to contemplate. I had burning in my feet after my very first chemo treatment; since I was so ill, they split up my drug administration, and later on shrunk my dose because of my side effects. As I stated before, my onc doc blithely stated that "neuropathy will go away after treatment." It did seem to get much better in my feet, it was very bearable and I had high hopes of regaining my strength. I began a walking program and was much more active in spring a year ago. In July one day when I had planned to walk about a mile, I made it to the half-mile mark and suddenly my legs just gave out. They lost all strength and I had to stop. The next night I was sitting in a chair and suddenly a great wave of pins and needles, tingling and burning started in my feet and shot up my legs and into my body. It passed away after a while and I was left stunned and puzzled and thought "Has the neuropathy made a big comback?" I was not able to walk much distance after that, and a few weeks later I started the treatment for the liver disease which made me very fatigued and I did as little as possible. I am almost 4 months past that successful treatment, I feel better than I have in ages but when I try to have a busy day or a busy morning even, my legs will become very weak and I have to sit down and try to recover. Not to mention the burning and discomfort in my feet. As I said, I could put up with the burning feet, but the burning, tingling and exhaustion in my legs is another matter. I feel as if I will be relegated to the couch and I am now wondering how bad this is going to get. I am going to the neuropathy clinic next week. I will see a nurse-practitioner, she can do about all that a doctor can, and can also get one in to see an actual doc quicker than going about it the normal way.
Hanieh, I also am puzzled by your symptoms since you did not do any taxanes. I hope you get some answers and are able to overcome this. The problems in your ears and head could very well be a sinus infection or something like that. If so the antibiotic should help. Yes, it feels very cruel that we have come all this way only to have these added issues; when we only want to have some simple enjoyment from the life that we have. I pray that your problems are not chronic and they will indeed get better as you move farther away from the treatment you did have.
Joliel, your symptoms sound much like mine. When the leg weakness hits, it is as if a large weight is lying on them and they are too heavy to move. Yesterday I did a lot of lying around and watching TV, just to get rest and get my mind off things. It did help the nighttime symptoms, but it is not how I want to live my life! I have always been very active, and am quite low right now when I think of this. Please let us know what your oncologist says.
Sylvia, I did read the articles you posted the links to, the yoga sounds great. Anything where I am not on my feet would probably be good, the problem here is finding a class conveniently located. The Health Center I used to go to only had Power yoga, which sounds too strenuous. I aleady have regular massage, and acupuncture. I read an article this morning on the Telegraph, I tried to link it but failed. It is called, "Don't kill cancer, learn to live with it; say scientists." It says that instead of using high doses of drugs that cause nasty side-effects, they should administer management doses for long periods of time. They spoke as if hair loss was the worst side effect of chemo, which makes me wonder if the article-writers have any idea of what they are talking about. If only that were true!!!
Must close for now, talk soon,
Mary
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Hello Mary, Hanieh and Joliel,
I have read all your articles with great interest and am so proud of the quality posts that you send. I have not had a moment to myself today and am suffering from brain fatigue right now.
I hope we can get to the bottom of this neuropathy.
I am going to have a look at the article in the Telegraph.
I feel that lower doses for extended periods might be better, so I am concerned that platins have now been added to the chemo regimens. All the chemotherapy drugs in use for breast cancer are lethal and can only be damaging our body, but what choice do we have?
i shall be in touch later.
Fond thoughts to you three lovely ladies.
Have a relaxing Friday.
Sylvia
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Hi Sylvia,Mary, Joliel and all
I'm not suffering from neuropathy, but I'm suffering from all the changes that has happened two right after this diagnosis. I have seen some doctors and a specialist about my pains in my legs and ankles. I also have done xray and blood tests to rule out different diseases but nothing has been shown . My body system has changed to the extend that I can't easily get rid of a simple cold and I'm still having a bad heaviness in my head after one week. I'm sure if I had some of these pains before I wouldn't think about them a second time so now we see how much the worry of what ifs can be bothering. Sometimes I feel really angry. But other times I feel grateful to be diagnosed at an early stage.
Lots of love
Hanieh
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Hello Hanieh,
I was glad to read that you do not have neuropathy from your breast cancer treatment, but do hope you have been tested properly for this. Although you did not have either of the two taxanes there are other chemotherapy medications that can cause this problem. I have been reading the neuropathy sections at the front of breastcancer.org and have discovered that it is not only chemotherapy that can cause peripheral neuropathy. "Surgery and radiation therapy may also cause damage to nerves in the chest and underarm areas which can lead to neuropathic symptoms such as pain, numbness, tingling and/or increased sensitivity in those areas". It also says that targeted therapies can also cause neuropathy.
You might like to have a look at the pages on neuropathy. I picked out two different lots which were very easy to read and understand. I looked at the list and found eight results for chemo-induced neuropathy and then took the first two articles on the list. I have not looked at the other six.
In the first article drugs are listed, symptoms, other possible symptoms, managing neuropathy, other causes of neuropathy.
The second article is Cymbalta helps ease neuropathy caused by chemo.
We have what I call the standard method of orthodox medicine. You are given another medication to help ease the problems caused by the first medication and so on and so forth. In the second article you can read about this drug, Cymbalta, and it nasty side effects.
You are probably right that your aches and pains are due in general to the changes in your body post breast cancer treatment. Your immune system will still be recovering and so you are more vulnerable to everything.
Just try to focus on the positive and live your life.
I do hope you will manage to get some relaxation, eat properly, do NOT overdo the exercise and avoid negative stress and negative people.
Have you been taking any interest in the elections in Iran? I read in one paper that young people were more interested in the latest fashions than in the elections.
Take care. Fond thoughts.
Sylvia xxxx
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Hello Mary and Joliel,
I was wondering whether you had looked in detail at the pages to which I referred in my post to Hanieh.
I know that you, Mary, pointed them out to us but I was wondering which of the eight pages you had read, as I concentrated on the first two on the list.
I am concerned that the platins are being added as the fourth drug in the chemotherapy regimen especially as carboplatin (Paraplatin) is being added to the chemotherapy regime or probably other platins.
I was also concerned about the long list of symptoms and other possible symptoms. They are mind-boggling. I think patients should be informed of all these possible symptoms before they start treatment. I was told nothing at all about neuropathy.
You might to have a detailed look at the top two articles of the list of eight and tell me what you think.
I would not want to take the drug Cymbalta that they say helps ease neuropathy caused by chemotherapy.
I choose to believe what my GP, oncologist and two podiatrists have told me, which is there is no cure for neuropathy and I would not take antidepressants.
I do hope you will share your vies on all this.
I think we should all have a good medical check up before beginning any breast cancer treatment and one afterwards to see how our health has changed.
That is about all for now. I am looking forward to a restful weekend and I wish you both the same.
Mary, would you mind reminding me what the article was in the Telegraph. Yesterday there was an article in the Independent about doing much more gentle chemotherapy treatment that will keep the patient ticking over if not completely clearing the cancer and doing long term gentle treatment. You might like to have a look on line. The title is Low doses of chemotherapy offer better prospects for cancer patients.
I found it quite hard to understand, as I thought a lot of patients were now getting low dose chemotherapy on a weekly or two weekly basis, rather than every three weeks which is what I had. This may be something different.
There are so many articles appearing now in various newspapers, but you do not know what to believe. It sometimes seems a bit sensationalistic.
I have just seen that in the Independent on Friday there is an article entitled Does talcum powder cause cancer?
That is all for today.
Sending you both fond thoughts.
Sylvia xxxx
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Hi Sylvia
Thanks a lot for all the information you provide us with. Regarding what you said about elections in Iran I should say we all participated in hoping that the reformists would take control of the country. Of course there are always some young people who only care about fashion and these sorts of things and Iran isn't an exception. What I saw today was how young people were eagerly participating in elections so that they can hope for a better future.
Lots of love
Hanieh
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Hi Sylvia and all,
I think I managed to get the link inserted, it is much the same as the one you linked, Sylvia. The idea is to "manage" the cancer instead of trying to "kill" the cells. I do have a friend who has been living this way for 10 years with kidney cancer. He has had many surgeries if the tumors are removable and get too large; He has had a kidney and gall bladder removed. At this very time he has some spots on his pancreas, which makes him nervous, but they are not operable. He takes some form of chemo at all times, and has frequent scans to monitor the tumors. He does get breaks if a particular medication quits working, and then the docs will scout around and try something else. So far, so good; he has had side effects from some of the drugs; then they usually adjust the dose or try something else. I also know a woman whose breast cancer has metastasized to her lungs. She has been on some form of oral chemo since the diagnosis and expects to be on it for the rest of her life. She is also TN. She asked me what medication I was on and was surprised I was not on any meds for cancer. So I suppose that's the general idea, to "control" the mets instead of trying to get rid of them totally and ruining whatever is left of the patient's life.
I have read the pages on this website referring to neuropathy. As I said before, neuropathy was mentioned to me before I started chemo, but not as anything serious. It was considered a probable side effect that would quickly resolve after treatment. We will never know what would have happened if we would have refused treatment, so this is what we are left with. I have another acquaintance who had to have a defribillator inserted into herself after the Adriamycin damaged her heart. These are such serious drugs, it would be a wonderful day when a better way is found to battle this disease. Using our own immune systems to fight the tumors seems like a very good way; I hope that research progresses quickly to a good result.
The platins and the taxanes seem to be the ones that especially cause neuropathy. Yes, the list of possible side effects is crazy, I guess we have to be grateful for what we don't have at this point! I will see the neurological nurse-practitioner Monday and plan to ask her a lot of questions and try to get to the bottom of whatever is going on with me. I only hope she will not do as rushed a visit as the doctors do, they are sometimes barely in the room and gone again, very frustrating.
When I finished chemo I was in pain all over my body, my GP at that time told me it was neuropathy and it would last about 6 months. And it actually did get much better, the fact that it rebounded later in the form of weakness and tingling in my limbs is puzzling to me. After chemo I was offered many drugs for my condition: Neurontin, Cymbalta, Paxil, Amitriptyline. I tried some of them and realized I would rather be in discomfort than walk around drugged all day. It rather bothers me to read the words of some of the doctors who so blithely talk about suffering through these symptoms and taking these drugs. It is easy to say, not so easy to do. I say this and hope I do not discourage anyone reading this who does take these drugs and finds them helpful. Everyone is different, I find myself very sensitive to all drugs these days and wish there was something I could comfortably take. I would say if they work for you, that is great!
As far as "talcum powder causes cancer", I suppose anything is possible. I am surprised at the large payout the family received, from what I have heard the lawyers usually get the bulk of any money, hopefully they got something. It sounds farfetched but the article did say "a tumor was found in a different patient at one time that contained a tiny amount of talcum". Perhaps the lesson is not to use anything for 30+ years! I still think the most reasonable thing I have head is that our own immune system fights the cancer cells, unless our systems are low for some reason.
Hanieh, I hope you are feeling better from your head cold, and getting some relief.
Joliel, chemo can also cause various neuralgias and myalgias. I would not be surprised if I had a bit of fibromyalgia going on too, but that is quite hard to diagnose. I also have osteoarthritis so another culprit!
Well, in spite of all this medical talk, I do hope everyone has a good weekend and cheerful happenings!
Talk soon, Mary
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Hello Hanieh,
Thank you for your post. You are such a polite young woman and I am glad I have got to know you. Your words of appreciation make doing the thread worthwhile. If there is no feedback I have no idea what is going on with all those who view. Thank you so much!
I was so glad to read, as well, that all you young people are participating in the elections and hoping for the reformists to win. I do not know much about how your government is made up. There were not many details in the article I read. I got the impression there were two parts and one of those was made up of seventy clerics. As far as I know, the results have not been announced.
You are quite right to say there will always be young people whose minds are elsewhere, on fashion for example. It is the same here, but young people are the future of a country and should involve themselves in having a voice by voting. The fashion in the UK is awful, with lots of women all wearing the same clothes of skin-tight thick tights with little tops and big boots up to the knees. They are most unflattering. Men have adopted more or less the same outfits, and they have been around for too long. When I see newscasts of the fifties here I am always amazed at how clean and tidy people looked, and how scruffy they look today. I like to see men in suits and I think tailored trouser-suits are very smart on women.
Elections seem to be in the air. They are taking place in the Republic of Ireland and they are counting the results today. I do hope our friend linali (Lindsay) from the Republic of Ireland will post to let us know what is going on.
Here in the UK we are getting wall to wall coverage of the referendum on staying or leaving the European Union, which is not being held until June 23rd. There is a lot of scaremongering going on from the staying in side.
I do hope you are feeling better. I do know that the Chinese herbal treatment, astragalus, is said to be a good immune booster. I have taken it in the past. Another good immune booster, is pycnogenol. I remember my breast cancer consultant surgeon telling me about pycnogenol when I was first diagnosed and I took it for sometime, as well as taking astragalus. I am thinking of going back to some of it.
I was recently adding up the people that I know around me here that have survived their breast cancer for many years. One was diagnosed thirty years ago and is still in the clear, and another has been in the clear for twenty-five years. Some others that I know were diagnosed fourteen years ago and others over five years. We must hang on to the fact that far more are surviving than not.
I have been reading my BMA medical encyclopedia and have been looking up more about neuropathy. And the different neuropathies. I found from this reading that the neuropathy in my feet would appear to be the cause of my having osteoarthritis in the joint of the big toe on my left foot. It looks as though the one caused the other.
I do hope all newly-diagnosed patients will get all the information together on diagnosis so that they make fully informed decisions about their treatment.
It is very cold here today and not much pleasure to be had in shopping in the town. Nevertheless it was very busy and people were buying cards and presents for Mothering-Sunday which is on March 6th.
That is about all for now, except to say have you ever heard of aduna baobab which I saw in the natural food store today in packets. It is described as 100% organic nutrient-dense African super-fruit that dries naturally on the branch. It says you can use it to boost smoothies, drinks or breakfast. There is also an ADUANA BIOBAB raw energy bar. It firther says that the baobab contains vitamin C, fibre and antioxidants. Importantly, it says one fruit equals 10 million livelihoods for rural Africa.
Fond thoughts.
Sylvia xxxx
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Sylvia,
These came in my TTAC newsletter.
Very interesting, there were a couple more I will get to later.
Mary
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Hi Sylvia and all
I just came here quickly to say my doctor has ordered brain MRI for the feeling of heaviness in my head. I'm having it today. I hope it's again nothing serious. I have been under much stress lately and I really need a relief.
Love
Hanieh
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Hello Hanieh,
I just wanted to say that I do hope all goes well with the MRI scan today and I sincerely hope that it is nothing serious and that it is perhaps sinus problems from your cold.
I hope to hear good news from you soon.
Fond thoughts.
Sylvia xxxx
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Dear Hanieh,
I wanted to let you know I have had a brain MRI, it was normal and that was a relief. I am glad your docs are following through with that so you can have some peace of mind. Hopefully it will be like the one I had, which I joked about because they found nothing there, not even gray matter!
I don't know how your MRIs are there, here they are very expensive. I have had quite a few since finishing chemo, I had a suspicious spot on my back they kept looking at but they finally decided it was a cyst. Apparently we can have cysts anywhere in the body.
Good luck, I certainly hope you feel better soon. I will be thinking of you.
Talk soon, Mary
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Sylvia, just to let you know I did respond to your last long email of Feb. 26. It is posted just above your last long email to Hanieh, looks like we both posted new ones at exactly the same time!
Mary
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Hello Mary,
I have just re-read your long post and it does indeed look as though we were writing about the same link. I also know people who are living for a long time on this top up treatment. A neighbour here died very quickly of kidney cancer so your friend is doing well. I suppose survival depends on just how much treatment a person's body can take. I have a neighbour here who is 91 and he has been having on-going treatment for some kind of chronic leukaemia. He has oral medicines and goes in periodically for blood transfusions. All this has been going on since he was 60.
I was surprised to read that someone you know with metastatic breast cancer to the lungs is on some kind of oral chemotherapy and that she is TN. I was wondering what she might be taking.
I have just read the links you posted about 12 Questions to ask before saying 'Yes' to chemotherapy treatment by Elyn Jacobs. I think those twelve questions are very useful and I liked the easy to understand summary at the end. I wonder if a patient would get twelve answers. As you say, even if we know the details of all the side effects of chemotherapy, are we going to say No? Would we be confident enough to reject orthodox treatment and opt for complementary alternatives? I tried this for three months but had to go for orthodox in the end.
I also found the other link that you posted, How to know if you have cancer by Dr. Leigh Erin Connealy. I also really appreciated the summary at the end.
I would tell all newly-diagnosed patients to get a pen and notebook and write down each part of their cancer treatment through questions and answers, especially about the whys and wherefores of their treatment.
I think we are going to have to learn to live with our various forms of neuropathy unless something new comes up.
As you say, all the chemotherapy drugs are lethal and do untold damage to our heart and every part of our body probably. I cannot see orthodox medicine going for simple prevention, mainly through our food. They have been trained to think that a pill cures everything.
I do hope you get some answers from your neurological nurse practitioner on Monday.
I agree with you that our best defence with cancer is for our immune system to fight it. I really believe that cancer is a failure of our immune system. As I was told by my breast cancer surgeon back in 2005, healthy people end up with cancer because their immune systems have not had to fight and become lazy.
I hope you are having a pleasant Sunday. Here in the UK the latest prediction is that Donald Trump will get the Republican nomination and will fight it out with Hillary Clinton. I cannot understand why African Americans have such faith in her.
There seems to be a trend to turn away from the candidates of the Establishment. There have been upsets in the Irish election and the moderates seem to have won in Iran. Here in the UK we get nothing but the upcoming referendum. I think the politicians should shut up and let the people decide on their own.
I have finished doing household chores and a few other things, so I am going to try to get some relaxation.
Let us all hope Hanieh is going to be alright.
Thinking of you.
Sylvia xxxx
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https://thetruthaboutcancer.com/cancer-causing-foods-2/
https://thetruthaboutcancer.com/ozone-therapy-cancer-treatment/
Also from TTAC, probably stuff we already know, but the ozone therapy is new to me. Turns out there is a practitioner only an hour from me. Also interesting! Will have to study more on that.
Mary
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Hi Sylvia and Mary
I had my MRI scan today and the result will be ready by Thursday. The cost of these scan and especially the injections drugs are too high here as well. But our insurance pays for it completely.
The results of our elections have made us really elevated although our conservatives are angry to death. Time to celebrate.
Love
Hanieh
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Hello Mary,
Thank you for the links. I will look at them tomorrow.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
I do hope that you get good results from your scan. It will seem a long time to wait for the results but try to keep yourself busy. Our thoughts are with you.
Glad you are pleased with the election results and that it benefits you all.
Love.
Sylvia xxxx
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Hanieh,
I hope the time passes quickly until Thursday, the waiting is not pleasant. I hope you are feeling better.
I heard some news about your victorious election. Then I heard a commentator say that this kind of election result has happened before, but nothing changed. I hope that is not so this time and you get a better result, and can continue celebrating. Sometimes the news by the time it gets to us is so watered down and changed I don't know what to believe,
Talk soon, Mary
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Hello Michael,
I have been wondering how you are and hope you are not having health problems.
If you have decided to move on, please let me know as I shall understand.
Best wishes,
Sylvia.
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Hello Mary,
I shall be thinking of you tomorrow and taking a great interest in Super Tuesday. We are getting quite a lot of coverage of these primaries.
The Queen here will soon be having her 90th birthday and all the trashy souvenirs are beginning to be advertised in the newspapers. When will all this nonsense stop and sanity prevail?
I suppose all this stuff takes our minds off breast cancer!
Sending you fond thoughts.
Sylvia xxxx
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Hi Sylvia and everyone,
I have been neglectful in commenting on the thread, but I do read the posts to see what is current with everyone.
Maryna - so sorry to hear about your neuropathy issues becoming worse. That must be so difficult to deal with particularly since you love to walk and keep active. I too would find all of these ailments quite depressing - so no surprize that you feel down in the dumps! hopefuly the nurse will be able to give you some information which will be helpful. I was interested in the distinction between peripheral neuropathy and motor neuropathy - are there tests to distinguish the two, I wonder? So glad though, that the chest pressure did not turn out to be heart related - that is a relief.
I never had a port for my chemo - my oncologist was not in favour unless absolutely necessary - she felt that they were seen as a foreign body to our systems and that our bodies would want to reject them - fortunately I never needed one. It must seem odd having a port inside! Let us know what your doctor says about the port removal.
Hanieh - so sorry to hear about your leg issues and your headaches. I often get dark thoughts of recurrence of the cancer in the form of metastases, and I have to tell myself not to think negatively, but to remain hopeful.
Sylvia - your warm kind words to all of us here are very uplifting - thanks so much. I have been focussing on thinking less about my past cancer diagnosis and trying more to focus on other things - like decluttering my house and going through stuff which I no longer care for and do not want in my life any more. I find this very therapeutic - I am fast becoming a minimalist and I like it. We can get by with so much less. I find that if I think about cancer, I get more anxious about recurrence or metastases.
When I was going through chemo, I was paranoid about getting neuropathy - I took buckets of ice with me to the cancer agency and all throughout my infusions I was icing my feet and my hands. I did get some very mild tingling in my feet and fingers, and my oncologist reduced the dosage for me because she knew how important it was to me. Thankfully, I have not had neuropathy up to this point, and it has been almost 3 years since I completed my treatment. But I never take anything for granted because I do believe that we can have delayed reactions to these harsh chemicals.
Today I went for my mammogram and in two weeks time I see my oncologist - so I am hoping that all will be OK.
We have all gone through a lot of stuff and life is not easy, but we must always have hope and work hard at being positive. Drugs are not the answer to all problems, but they do have a place. The difficult thing is knowing when to take them and when to say no thanks!
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