Calling all triple negative breast cancer patients in the UK
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Hi, 4everstrong,
Glad to hear from you, and you are sounding chipper. And I am impressed, you have an onco-geneticist! Sounds like he/she is going to keep digging and see what else is there.
We all have aches and pains and worry sometimes, it is a common theme. I guess it just is part of the whole thing. Good luck with counseling, I hope you find someone good to talk to.
Also good luck with your MRI next week, that is always an anxious moment waiting for results. I will be thinking of you!
Yes, I am very much looking forward to my trip. Going with my sis-in-law, she is already packing and it's 3 weeks away. I am not that organized, plus if I packed now I wouldn't remember what I packed! Trying to get my knee into better shape in the meantime.
Talk to you again soon, Mary
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Hi, Kath,
The only thing I can think of as far as the creepy-crawly feeling is that it's a nerve thing. Some kind of stimulated nerves that hopefully will die down after a while. A rehab nurse I know told me that the best way to handle the neuropathy/nerve damage is to keep distracted from it as much as possible. Now that you are busy working again I"m sure you have a lot to think about! Do you have to drive very far to go to work?
We are having spring and you are getting into winter, I hope you don't get too cold. For some reason I never think of Australia as being cold, but it's a big place!
Talk to you again soon, be well, Mary
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Hi, Kath,
The only thing I can think of as far as the creepy-crawly feeling is that it's a nerve thing. Some kind of stimulated nerves that hopefully will die down after a while. A rehab nurse I know told me that the best way to handle the neuropathy/nerve damage is to keep distracted from it as much as possible. Now that you are busy working again I"m sure you have a lot to think about! Do you have to drive very far to go to work?
We are having spring and you are getting into winter, I hope you don't get too cold. For some reason I never think of Australia as being cold, but it's a big place!
Talk to you again soon, be well, Mary
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Hi Ladies,
Just checking in to update. I had my #9/12 today and 3 more to go. Let the countdown begins.
As usual, I just slept during the infusion.
Last Monday, I received my genetic testing result and it's negative. I am glad to put it behind me and not be haunted that I might have pass it on to my DS.
Yesterday, I also received my chest x-ray and bone scan result, both are negative. I did it after AC and before I started Taxol and Carboplatin. I was not able to do it before I started my chemo because I was pregnant at that time.
Best regards,
Lou
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Hello Mary,
I was glad to know you had a good weekend.
I agree with you that the world situation is chaotic and very dangerous. The way things are going we shall be into WW3 before we know it. I think the Americans and the Brits always have to have an enemy and they are stirring up anti-Russian propaganda. Where is the proof of what they are saying? Donald Trump seems to have forgotten all his promises to those who voted for him. He is now the hero of his enemies and the enemy of those who voted for him! I am fed up to the teeth with all politicians!
As for the last Chris Woollams newsletter, there is not much to say. We all have to make up our own minds about vaccines. I do not get the impression that the group here has that much interest in what he has to say. There is no input from the group about his newsletters except from you and sometimes adagio.
I do hope all goes well on April 20th when you have your injection in the knee.
As you know, I do not believe in exercise except for walking.
Your meal of fresh asparagus and wild cod sounds really nice. I love asparagus and it is just coming into season here.
I have felt somewhat dejected lately as I now have four women in my circle that are dealing with cancer that has come back. One of them has just had a MRI scan on the brain. That is not for breast cancer. The other one does have metastatic breast cancer and has been on and off drugs for two years. Both of these ladies had it come back and spread after thirteen years. The daughter of my friend and neighbour has breast cancer in the other breast after nearly twelve years. She is waiting for genetic testing results. The other day another lady has had her breast cancer come back after seven years and it is in the liver and spine. Her breast cancer was hormonal and she was only given surgery and then put on tamoxifen. I also understand she had cancer in the thyroid in the past. My friend's daughter was triple negative like me, the other lady was hormonal and it came back after thirteen years. It does not make me feel very confident.
On Monday I went to the hospital to pick up a new prosthesis. I hated the feeling of being there.
Sending you my very best wishes.
Love.
Sylvia xxxx
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Hello Kath,
I think Mary has written words of wisdom to you. You might benefit from some massage therapy from a good professional person.
Fond thoughts.
Sylvia xxxx
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Hello Lou,
You have nearly finished that long journey. Those three sessions will soon be over.
I was so glad to read that you have had good results all round. Congratulations.
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia,
I am so sorry to hear about so many of your friends and neighbors having recurrences of cancer. That would indeed be so upsetting, not only because of the empathy you have for them, but also because you have been a sufferer yourself and don't want to be again. It's as if we go along in our lives and feel somewhat normal and when we hear these things it snaps us back to what could happen to us as well. I had a pedicure yesterday, the young woman doing the treatment mentioned that there was so much progress with cancer, especially breast cancer; that it is now just a "bump in the road". I think this is a common thought. While I was going through treatment my youngest step-daughter gave me very little support, I talked to her about it when I was feeling better. She honestly thought that BC was just something that was treated and recovered from nowadays, and that I would be fine, sort of like having a very bad case of flu that makes your hair fall out!
I ran into a man I know at the grocery store yesterday, he was always very large and still is. He had bladder cancer a couple of years ago and went through treatment at one of the big centers in Texas, and the last time I saw him he had made a complete recovery and all his scans were good. Yesterday when I saw him he was bald and I asked him if he had shaved his head as is the current style. He said no, the cancer had come back and was in his liver and lymph nodes. He was doing chemo again and he had been told he had a year to live. We chatted a little more and he went on, I was crying as i finished up in the store. He is younger than I, and it's just upsetting in so many ways, as you know.
I am so cynical about politics. The Russia intrigues started over here and we were told to believe that Russia influenced our presidential election, to bolster the idea that Trump was not the legitimate president. Now it's as if someone has stirred up a big wasp nest, and things seem to be simmering all over; my cynicism (and perhaps a bit of a conspiratorial mindset) tells me there are forces at work behind this, plus the bulk of the media here will say anything to add to the notion that Trump is a bad leader. I don't see how any good can come out of all this,
You and I and Adagio can discuss Chris Woollams, and if anyone else wants to join in, that's fine too. We will just try to live as best as we can and enjoy our lives, and try not to worry too much. Not an easy task at all times, that's for sure! I find a lot of understanding and support in this thread, and hope everyone here does too.
Talk to you again soon, Mary
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Hi, Lou,
Thanks for the update, you are making great progress. Only 3 to go, then you can celebrate! It's also something to celebrate that your scans are all clear. And good news that you don't have to worry about the BC being of the genetic type. Hurrah!
I am going for my 6-month BC checkup on the 25th of April, usually these things are quite brief, which is a good thing.
Talk to you soon, Mary
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Hi Sylvia and Mary,
Thank you both for your kind words.
I just received the confirmation through e-mail from CancerActive that I am now in their mailing list but I haven't received their newsletter yet. Hopefully, I receive soon, so I can also start reading also.
Sylvia - It is so sad to find out about not 1 but 4 persons you know who are having recurrence right now. It is scary to go through it all again but others can still survive metastasis. The only scary part is 2nd time around they don't look for cure but only a way to control their growth and keep it from spreading.
I was actually worried for the bone scan because they ask me to wait outside after the scan and they repeat scanning again in the pelvic area then ask me to wait again. They said, they might do another scan if my BS requires it. I was in the hospital the whole day just for chest x-ray and bone scan. I was the 1st patient there and I was the last to leave.
Mary - I will be in your pocket when you go for your 6-monthly check up. Hoping it will be as brief as can be.
When I met my BS yesterday she schedule me for another 3-monthly check up without test in July. She said she will order the test on the next 3-monthly in October which is about 1 year after my surgery.
Best regards,
Lou
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Hello Mary and Lou,
Thank you for your posts. I shall answer them during the four-day Easter break, when I hope to find time to catch up on everything.
I see that Chris Woollams has just posted another email. I think that two every month is too much.
Have a good long weekend.
Fond thoughts.
Sylvia xxxx
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Dear Sylvia and Mary,
I am lucky not to have any circumstances that bring on more dark fears for the moment. I wanted to reach out to acknowledge how overwhelming it must be to have people in your lives who are struggling with recurrence. You are both such a source of strength for us here, but of course no one is exempt from these worries for ourselves, or from our sorrow for others. You are both in my thoughts.
Pam
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thanks ladies appreciate it! My mind is in overdrive now! Still having lots of problems with my feet and developed a rash on my right toes during rads after wearing New covered in shoes that settled but never really went away. Because it's so cold here I wore socks and boots the other day which were a little tight and aggravated my toe. It's a tiny but red now and I had myself convinced it was something terrible. Still there and I know it's from the pressure of the boots but I still
Panic! Have to stop this is terrible! Will make an appoint for counselling next week and try and think logically! Off to see my grandsons in Melbourne tomorrow! Can't wait! Happy Easter
Cheers
Kath
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on the road for the 3 hour drive to Mildura then flight to Melbourne laden with Easter eggs for my grandsons. Beautiful sunrise!
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emus say hello
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Hello Mary,
At last I have managed to find some time to sit down and post. It is true that all these recurrences have made me feel strange. I do wonder how things will turn out for these four ladies, not to mention the husband of one of these who is also being treated for cancer. It makes me wonder whether there is a time limit for how long these drugs work. I do not think there has been great advances, certainly not since I was diagnosed. The one person that has survived for about thirty years, after just a lumpectomy and radiotherapy in her twenties. I am pretty sure she had triple negative and that there was no other treatment, and yet there she is alive and well! We just do not know how all this will turn out. It seems to be very individual. I do wonder why some women talk of cure when they have successfully finished treatment for primary breast cancer. The doctors do not say 'cure'. They say no visible evidence of disease. Some women are worried when the cancer spreads because they are told 'we can treat you but we cannot cure you'.
You are right about what people tend to think about breast cancer. They seem to think that when you finish treatment that is it. They have no idea what survivors have to live with. Having a bad case of flu is indeed how it is viewed by those who have not been through it.
The woman I know who had triple negative breast cancer received her genetic report and she does not have the BRCA1 or BRCA2 faulty gene, so that is good news. She is going to have a mastectomy for the other breast and the radiotherapy. The radiotherapy is worrying because it looks as though the first lot of radiotherapy to the other breast has damaged one of her lungs.
I do not know whether this is a new tumour or whether it has spread from the other original tumour. That is all a bit vague at the moment. I do not know either what kind of breast cancer has been involved in all of this. People seem a bit vague about all the different breast cancers and sometimes even receptor status.
I was sorry to read about the man you mentioned and how he has been told he has a year to live. I think, if that were me, I would be pulling out all the stops and trying all the other possible alternative treatments.
I cannot see that immunotherapy is the great breakthrough. I have been watching another lady through immunotherapy and it seems as awful as chemotherapy. The drugs are just as lethal. Boosting the immune system sounds great but I do not think it is as simple as it sounds. It seems hard to test whether it is working, and then as we have read the drugs can cause the immune system to go into overdrive and you end up with an autoimmune problem.
I was horrified to read in the paper the other day that drug companies were throwing away cancer drugs in order to bring in new ones and charge more. There is a drug for breast cancer called Kadcyla that costs £90,000 for a complete treatment. Here in England it has been withdrawn from the NHS, but kept on the NHS in Scotland and Wales. They both have very small populations compared to England.
The state of the world grows more dangerous by the day. I think that Donald Trump is out of control and being pushed from behind the scenes. We are not in a good state in the UK and the NHS and education is suffering from lack of funds and yet the Conservative government is riding high.
Yes, you and I and adagio and now Lou, can discuss Chris Woollams. I am about to print off the latest email.
It is quite cool here today but holidaymakers are dressed for summer and buying ice creams in record numbers.
Wishing you an enjoyable Easter.
Love.
Sylvia xxxx
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Hello Lou,
It is true that people with metastatic cancer can survive for years. I think it should be called metastatic cancer and not terminal cancer, which is often used.
I do hope you enjoy the latest Chris Woollams newsletter and that you will let us know what you think of it.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
Thank you for your kind words. They make everything worthwhile. I do hope you are making good progress.
Sending you best wishes.
Sylvia xxxx
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Hello Kath,
I was sorry to read about the rash on your right toes. It is possible that it was caused by the shoes and boots, but if it does not disappear be prudent and get it looked at.
I do hope you will be able to get some counselling soon as it always helps just to have someone with whom you can talk over everything that is bothering you.
I do hope you will enjoy Easter with your grandson in Melbourne. What a lot of driving you have done recently and what a lot of miles you have covered.
Thank you so much for posting those lovely photographs.
With the neuropathy in your feet, why not try reflexology? It is supposed to be very relaxing.
Any strange feeling in the arm may be the after effects of surgery. Even now, every so often, I have a strange sensation in the upper part of my right arm where I had surgery, lymph nodes removed and radiotherapy. I find that a gentle massage with my hand or a gentle massage with a detox brush, helps a lot and it disappears. You might want to get this done professionally. It is called a lymphatic manual drainage. You need to keep your feet and arms well moisturised.
Wishing you well.
Sylvia xxxx
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Hi, Sylvia,
Things do seem to have been hectic, or maybe I am not handling things well. I do know I seem to go from one ailment to another. Now I have what seems to be bad allergy attack, or a bad cold. I probably caught something at the big wedding I attended. Last night it kept me awake from coughing and spitting, gross. My knee is a bit better, what I realize over the last few years is that nothing seems to get better quickly; things get better very gradually and there is not much use trying to rush it. With everything, prevention is the far better course!
I too think that all these cases of cancer follow very individual courses, what works for one person doesn't work for another. The Orthopedic doc I spoke to about my knee went through his wife's discovery of cancer, and subsequent mastectomy. He was rather irritated that the oncologists will never tell her she is cured, even though she is 8 years away from her diagnosis; I don't think they ever tell any of us we are cured because they don't know. I told him his wife was lucky she didn't have to have chemotherapy and radiation.
In reading through Chris Woollams' latest post, he does cite a study that links high blood fat levels with increased metastases and lower survival rate. But then goes on to say that perhaps the problem is in the gut, and with the bad bacteria there. I cannot say I have made it through the whole of his latest post, there are so many links in each article that it is very time-consuming, although interesting.
I agree too that most people I talk to don't know about their type of BC; I usually ask them if they take Tamoxifen or another Al and thus know if they are E+ or E- or HER2.
I'm sure that is correct, what you said about the immunotherapy drugs, there is no drug as far as I know that doesn't have a side effect, or many. We can only hope that a drug will have the side effect of making us better!
I hadn't heard that about the Kadcydla. So it is a drug, actually 2 drugs, that targets the HER2 receptor. I suppose it is replacing the older Herceptin and whatever else they give with that. I suppose that the NHS is still offering people in England the older Herceptin, and offering the new drug to the less-populated countries. The Herceptin seemed to work pretty well on the people who needed it, although it is a year-long treatment course. I wonder if the Kadcydla is on a shorter course. Perhaps England could look at it as if the smaller countries will be the trials for the new drug, since there is probably nothing to be done about it until the price comes down enough to suit the NHS. The patients are at the mercy of the pharmaceutical companies, the health management systems, and the doctors, we are the bottom of the heap!
I agree the state of the world seems to be growing more dangerous by the day. However, please remember that most of the media are trying to paint a picture of a deranged Donald Trump. These problems did not all arise overnight, they are being brought out and highlighted by a media desperate to control the message. These things were going on when our last president was in office, there were drone bombings and attacks, but all was reported in a subdued light or glossed over. I don't believe most of what I read, it is really sad to feel this way; and yes, it is scary.
Did I tell you I bought the Cancer Whisperer? I haven't read it yet, hope to get to it soon.
Our trip is fast approaching, I hope I can get rid of my maladies before the day arrives!
Again, I am so sorry about all the people you know who are suffering with recurrences and setbacks, I do wish them well!
Talk to you soon, love,
Mary
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Hi Pam,
Thank you, I am glad you see positivity in my rambling posts! I see you are approaching your 1 year-since-diagnosis mark, hope you are feeling well and recovering from everything that has been done to you.
The worry about cancer recurrence is one of the worst side effects of having had this disease, when our friends and neighbors are struck and re-struck it brings it all home. We worry for them and for ourselves, but have to keep living as best we can at the same time. I'm glad you have no such reminders in your life now.
Talk to you later, Pam! Mary
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Hi, Kath,
Thanks for showing us the pics of your landscape, and emus! What do they eat? It looks rather bare.
I hope you had (or are still having) a wonderful time with grandsons. Did you use real eggs, or the plastic ones that people use now? I suppose they are more sanitary. When I was a child they used the real eggs to hide, and then after we found them we peeled them and ate them with ham. For some reason, Easter seemed to be the only time we ate hard-boiled eggs. Not sure why, we all liked them. Fried eggs seemed to be the preferred way to eat them.
Anyway, hope all is well, and I hope that counseling is a big help to you. I am a worrier myself and I understand how it is hard to pull oneself out of it. I usually have to divert and distract myself.
Take care of yourself, Kath! Talk to you soon,
Mary
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Kath - thanks for sharing your photos of the sunrise and the emu! They brought back memories of our many hours of driving while in Australia in October last year. Travelling to Melbourne is a long way to go with Easter eggs for your grandsons - I hope you had a fun time with them. How old are they? Is the wedding coming up soon - your life sounds quite busy at this time. It will help take your mind off the cancer issues which I think is a good thing. I am enjoying my new little grand daughter who is now 2 weeks old - she is already growing so much.
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Maryna - I can identify with the increased length of recovery from ailments. I even notice a simple thing like a scratch or red mark on my skin takes much longer to get better than ever before. Is this part of getting older, or is it a result of our chemical treatments? Anyway, it is allergy season here in Vancouver, and when I go for my walks, I notice that I am sneezing a lot. Hopefully yours is allergy related and not a cold which I think would be worse. Glad that your knee is beginning to feel a bit better, and if you get the cortisone shot (maybe you did already), that should help considerably. If I were in your situation with travel and wanting/needing to walk a lot, I would go for the shot also, just to get you through and to make your vacation more enjoyable for you.
I have not been faithful in reading the Chris Woolams articles simply because it is very time consuming and a lot of them make me feel like I am not doing enough, but I am not one for looking for problems with myself - I wait for them to present themselves to me. Not sure if you know what I mean. I do the best I can for now in terms of eating healthy and taking supplements which are important to me. Sometimes I feel overwhelmed by the volume of information out there and my mind somehow cannot process it all.
I do not have the book Cancer Whisperer, but I do follow Sophie on facebook, and I have learned that her brain cancer has come back and she is awaiting insight as to what to do next. She is a wonderful person whom I admire for her sheer honesty and transparency.
You must be starting to pack for your trip - the worst part of travelling for me is the long flights. I find wearing support hose a blessing on the long haul flights.
Have a good week and hope your allergies settle down soon.
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it's good fun isn't it? My grandsons are 3 and 14 months ! Full of energy ! Iv jus been to Dr and got him to look at a small lesion on my neck. He says it's a small bcc that he will cut off on Friday. He assures me it's not related to my breast cancer it's the Australian sun and I have fair skin and red hair but I'm terrified! God I hate thi
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Hello Mary,
Thank you for your post. I do hope you will be feeling better and ready for your trip. I think you are going at the beginning of May. Please let me know the exact date.
It sounds to me as though you need some complete rest for a few days. I think that you are right about taking longer to recover from ailments as we get older. Please take care.
There is no point anyone telling patients surviving cancer that they are cured, because they are not. What they are is in a state of 'no visible evidence of cancer'.
I do feel that we are getting somewhat overwhelmed with all the information coming out of the newsletters from Chris Woollams. There is only so much that our brains can take in. We have to live normally and not become obsessed with everything. It is more important to live a normal life and enjoy our days. I think the worst thing that could happen would be to feel in a state of stress because of all the information. At the moment I am just reading the newsletters and only going further if I think there is something new. I am avoiding supplements as much as I can and eating simple food and keeping active.
Herceptin is the drug of choice for patients with primary breast cancer and HER2+. I think triple positive breast cancer is perhaps more aggressive than triple negative. My friend and neighbour died three years ago nearly from metastatic hormone + breast cancer. She had a mastectomy, chemotherapy and radiotherapy, not to mention tamoxifen and after this treatment she was on Herceptin for about a year. She was then in the clear, as they say, but the cancer came back and spread to the lungs and bone. She was back on Herceptin and then had all kinds of drugs, mainly monoclonal antibodies. Everything got worse, she was in pain with fluid on the lungs. She went to the hospital on a Monday to have this removed, and she died the following Monday, age 59. I think she may have had the Kadcyla. She was a dancer, a swimmer and a great walker. She was tall and thin and probably on a good diet. I went to her funeral which was on my birthday. I felt very sad about her.
I do hope Donald Trump calms down.
Theresa May has called a General Election for June 8th. The country is in a state of hysteria again!
Keep well and try to get some rest.
Love.
Sylvia xxxx
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Kath - don't be scared of the bcc on your neck - I am also fair skinned and get those same lesions and go to the doctor on a regular basis to have them burned off with liquid nitrogen. Generally, if these things are caught early, they do not progress. I try to stay out of the sun when I can and use sunscreen on a daily basis in the summer and on my face even in the winter. It is a hassle, but worth it. I still love the warm sunny days, and try to expose my skin for about 20 minutes in the early part of the day to get the benefit of the rays, then put on my sunscreen. Good luck on Friday, and hopefully it will not be painful for you.
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Sylvia - I can only imagine the stir in the UK about the call for an election on June 8th. What strange times we live in. Sometimes I wonder what the best way is to handle all that is going on in the world. Maybe we can play our small part by being kind to our friends and neighbours and focussing our attention on personal health and wellness. Of course I do believe that we should keep ourselves informed about what is going on in the world - although sometimes I try to avoid the news especially when it is all bad.
I do like your approach to wellness - eating simple but healthy foods, and keeping active. One thing I would add is getting adequate rest - for me this is vital. I have been particularly aware of this in the last couple of weeks while helping my daughter with her new little one. Because I have not slept as much as usual, I have noticed that I do not feel as well as when I don't get good sleep and a rest in the afternoon with a nice cup of tea. I am glad that I have discovered this because I think it is important to know our limits. I love being active and live an active lifestyle, and sometimes I just keep going - now I am realizing that this is not always what is best for me.
I have a friend who is taking Herceptin - she is triple positive - her tumour was 8mm - she has had chemo, radiation and now herceptin and is also on one of the Aromotase Inhibitors. It seems like a lot of treatment for such a small tumour to me - but I guess the experts know what is best.
I am still very ambivalent about taking chemotherapy and periodically 2nd guess myself.
As for WDDTY and Chris Woollams - there is just too much for me to process at this time - like you, I read an article if it is of particular interest to me e.g. Vitamin D levels, supplements etc. But I simply do not read all of his newsletters these days.
I was saddened to read about your many acquaintances with recurrence of their cancer - this is so hard to deal with, and when I hear about this, I invariably think that that could well be me. And I honestly do not know what I would do or what treatment I would pursue and I would be absolutely petrified. I can only imagine that many of us get these feelings often. We are all in the same boat, and I have to remind myself daily to LIVE life to the full since there is absolutely no guarantee of anything. I do hope that you are feeling less dejected - it is easy enough to feel that way.
I am so longing for Spring weather - it has been a long wet and cold Spring here in Vancouver. Wishing only the best for you, Sylvia. Take care.
Where is Gina these days? I am missing her cheery posts.
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Thanks adagio I shouldn't be scared I've had them cut off before on my nose and leg about 10 years ago and i know that I had this before diagnosis and while on chemo but I always think worse case scenario! My dr said it is a bcc and that's all
It is and he is a fabulous dr but still I stress! Yep also got some burns while on taxol
During our 45 degree heat wave. Aches and pains everywhere else are settling slowly and ifeel
Pretty good other than the anxiety . Hope it will slowly settle. Thanks for listening I really appreciate it
Cheers
Kath
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Hi Sylvia and all
I was going to ask you about Theresa May and the situation in Britain. I'm glad you mentioned that for us. So sorry about your friend. How heartbreaking.
I too agree that triple positive breast cancers are so aggressive . Additionally, many are possibly led to believe since tamoxifen and herceptin are part of the treatment plans, that somehow it will not recur. So much more education is needed for the general public. Just my opinion. Mary you said it best: fear of recurrence for our friends and ourselves is the worst side effect.
Hoping the best for you Kath as you put this in your rear view mirror.
Its been 17 months since my dx. Other than needing a knee replacement due to a pre breast cancer injury, I would really be feeling quite energetic. It's difficult with knee pain and arthritis. I've had several sports injuries. I was previously a runner, and suffered some falls during races.
Cortisone shots work, but when they begin to wear off, the pain is awful. Though I was able to go to a resort for a destination wedding. Life is moving on.
Val
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