Calling all triple negative breast cancer patients in the UK
Comments
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Honeytagh so good your colonoscopy went well. Sorry for your friend. I know she values your support, and glad you are seeking the support you need.
Rhonda, hope you guys keep your power on, and soon it will be spring
Katheseward I can't imagine how the animals bear the weather, but somehow they do. So glad you are not having side effects from rads.
My prayers and thoughts are with all.
Val
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HI, Sylvia,
I didn't really know that the UK is also mad at Donald Trump, that's the power of the media; I talked to a friend the other day who said she is afraid Trump could become a dictator. I think that's very unlikely, I told her that in my opinion, we are already being dictated to, by the media. Most of them have forgotten how to be journalists, and just repeat over and over whatever is the hot button of the day. I do not listen or watch anymore, and get my news online, except for very local news.
I did find the LBC radio station online, and learned that Nigel Farage's show is on here about 12:00 Noon. I will have to remember that when I am home at that time.
We are having a very unseasonable day, it is about 75 degrees F, and it's odd to see all the bare trees, because it feels like warm spring. It will change tonight though and cool off tomorrow. I have a little bit of envy for Rhonda's snow. She is probably tired of it, but we have had only one snow, and it didn't even cover all the grass. I just think it's so beautiful, and peaceful, during and after a snow, and the moisture is so good for the ground. We have had a couple of ice events, happy to do without those!
i have had a massage today, and feel very relaxed. I have been trying to work more exercise into my life, and it is really setting off the neuropathy in my feet and legs as I do so. I am someone who always liked being active and exercising and it is really hard to put up with this. The massage was wonderful.
I have had no new posts from Chris Woollams lately.
I will talk to you again soon, love,
Mary
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Hi again, Sylvia,
I did see your other post, but I don't know about posting my PM here, it's rather depressing! I would think you would have grown up in an England that had just survived WWII, which part of UK did you live in then? You would probably have been born right after the War?
It seems to me you have had a very interesting life, and probably have lots of tales to tell.
Talk again soon, Mary
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Hi Mary
It's very warm here too. I did a lot outdoors today due to it being in the low 70's. I'm waiting for winter to show it's face again. I don't like that the trees, small plants, and flies are confused. This could really throw off our growing seasons.
I'm in the same boat with the neuropathy. When I move too much it really flares up.
Hope all are having a good weekend.
Val
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Broken Hill Sumset0 -
Hello everyone,
I thought you might be interested in this health poster. Sorry about the small print but it did not reproduce well.
I shall reply to everyone later.
Best wishes
Sylvia xxxx
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Hello everyone,
I got this poster in a natural food store in Exmouth, where I was buying various seeds. Their produce is excellent and reasonable priced. I was admiring the posters in the shop, especially the one I posted, and the man serving me asked me if I would like one. Everything on the poster is part of my regular diet. I eat the raw nuts as snacks and with the seeds I grind a mixture up most days in a coffee grinder I keep especially for this purpose. I put the ground up mixture in a cereal bowl, put some organic soy yoghurt over it and then decorate the top with gogi berries. It is very tasty and very healthy.
You can find the shop on line at www.grapetree.co.uk
The store also does a very interesting and colourful newsletter, which is also on line.
Best wishes.
Sylvia xxxx
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Hello Kath,
Thank you for those really beautiful photographs. They are most appreciated.
Best wishes.
Sylvia xxxx
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Hello Mary,
I think you should put that PM on the thread to show what a survivor you are. It is not depressing, it is the reality of life.
Yes I did grow up in the middle of the London blitz during the Second World War, but I do not remember much about it. I was born in 1942 and was actually born in East Ham because my parents had been bombed out of their home and we had gone temporarily to a different house. My mother used to tell me that life carried on regardless of the war, and that she could be out with us doing her shopping when the air raid warnings would go off and people would run for the shelters. Raymond is a bit older than I am and remembers more of the war. I grew up seeing bombed out buildings etc. but somehow they were there and I did not really relate them to a war. I do remember ration books and rationing and that people were healthier on this ration diet. I much prefer the simple life in London at that time, compared to now. People knew one another, neighbours were good, and I do not like the greed and selfishness of the present UK.
I lived in London until I was nineteen and then left home for university.
I do not look at all elderly and I do not feel it.
I think we all have one book in us at least, but it is finding the time to write it.
Have you heard about the outlandish behaviour of the Speaker of the House of Commons? He should have been sacked!
The poison continues here about Donald Trump, not to mention Nigel Farage and not to mention Jeremy Corbyn, the leader of the Labour Party. The establishment here will just not let up.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary, again,
Like you, I do not take much notice of any of the media. They just give us their own versions of things.
I have been watching a programme with Lucy Worsley, a history professor, entitled The Fibs of History. It makes me realise that we are taught a biased, subjective version of historical events as seen by the victors. If you can see it I think you would enjoy it.
I was glad to know you have found LBC. Nigel is on Monday through Thursday.
I cannot understand what is going on with your weather. It is just changing weather condition. It has been unusually cold here and we even had a few snowflakes over the weekend.
I was glad to know that you enjoyed your massage. I know when I go to the podiatrist that my feet feel good just from her rubbing in moisturiser, so I can imagine what a proper massage must do. I have no answer for the neuropathy problems. I find my feet feel good after soaking them in a bowl of warm water with a mixture of salt, bicarbonate of soda or Epsom salts.
I have not received any new posts from Chris Woollams either. I still have not got to look up his information on things other than breast cancer. I want to find out more about the problems with my gums.
I need more hours in the day. I am still reading What Doctors Don't Tell You, especially the article on breast cancer. I also need time to read more of the Cancer Whisperer book, read a French magazine, try to do a bit of Spanish, and go for walks.
Keep in touch, as I always value your views.
Love.
Sylvia xxxx
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Hello Kath,
I was glad to know that you had got through your second week of radiotherapy and that you are back home for the weekend. I do not know how you are doing all that driving and putting up with all that heat.
It is so good to know that you have not had any side effects from the radiotherapy as yet, but remember not to overdo it as things build up as the treatment goes on. Take good care of your skin.
I was sorry to read that you are still suffering with the peripheral neuropathy in your hands and feet. Try to get through your radiotherapy and then you will have more time to concentrate on these other problems. Perhaps aromatherapy and reflexology will help and you could also see a podiatrist to get advice for the feet.
Keep looking forward and be strong.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
It was nice to hear from you.
Your friend must be relieved to have the mastectomy behind her and she will now need time to recover. You mentioned that one lymph node was involved. Do you mean that cancer was found in the lymph node or that one lymph node was removed for testing? Often several lymph nodes are removed to see what is going on. When I had my mastectomy I had seven lymph nodes removed, but only one, the first one (the sentinel node), had cancer. I am still here! Your friend will need to do exercises to keep the arm moving to avoid lymphoedema, which is a swelling of the arm. She should have been told to start the exercises straight after surgery. If she has bad swelling she might need to see the lymphoedema nurse to be shown how to do manual lymph massage. When nodes are removed the lymph system, which circulates around the body, and acts a cleansing system, does not work properly.
You need to be strong for her and support her through this. If she sees you upset it will frighten her.
Everyone with breast cancer faces the same risks and side effects. It is a mistake to think that having hormonal breast cancer and being on tamoxifen or aromatase inhibitors is an easier journey that TNBC. It is not and there are no guarantees that the treatment works.
That was good news about the result of the colonoscopy.
I do hope a visit to a psychiatrist helps, but probably you will be put on pills! You need to have time to yourself and learn to be thankful for each day. You cannot solve the world's problems.
I do hope all is well with your daughter and husband.
Fond thoughts.
Sylvia xxxx
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Hello Val,
I just wanted to say that I hope you get good news from the vaginal ultrasound. I was glad to know that your knees are much better. Keep up the good work.
Fond thought.
Sylvia xxxx
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Hanieh,
I am so sorry that the cancer has struck your friend again, hopefully she will have a good recovery and be able to get back to her life. I'm sure she is glad she has you for a friend.
I hope the therapy will help, I think it would be good to talk openly with a professional. Sometimes it's hard to talk to family since they just want us to be better. I think you are a sensitive, intuitive person and you are taking the emotions of your friend upon yourself.
I have hemorrhoids too, what a great thing to have in common haha! Glad your colonoscopy went well, that's always a relief. In my opinion it's one of the really good diagnostic tools, and works very well.
Thanks for the congrats on my 3 years since diagnosis, don't know where the time went. Well, yes I do, but it certainly went quickly.
Hope you are feeling better soon Hanieh, love, Mary
(Did you ever get any snow? We did not, Rhonda got it all!)
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Hello Rhonda,
I do hope all goes well with the PET scan on Wednesday February 15th.
If you have a biopsy of the lymph node I hope you get good results. You have not yet had surgery, so I would think that any affected nodes would be removed at that time. Are you going to have a mastectomy? If so, I would have thought this would have taken care of everything. My right breast was very swollen at and after diagnosis. Like you, I had a large tumour, 6+ cms, had chemotherapy before surgery, the tumour shrunk a little bit, but did not disappear and everything was fine after a mastectomy and removal of lymph nodes.
I remember you said you were going to finish chemotherapy mid-February, so is that not now the case? Perhaps they will decide to do surgery straight away and then do more chemotherapy afterwards. My oncologist thought this might have to be done with me after surgery, but I was clear and did not have to have it.
Please let us know how you get on.
Sending you fond thoughts.
Sylvia xxxx
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HI, Kath,
I had to look up the temp since we still use Fahrenheit, wow, so it's over 110 degrees F there! That's awful, I don't like temp extremes at all. I don't blame you for feeling bad for the animals, they will probably be fine as long as they have water.
Glad the radiation is going well for you, you are making a lot of progress. I didn't have rads so can't really speak about it, but sounds like you are dealing well. Sorry about the neuropathy, I do have that and it's no fun.
Beautiful pics you posted, and I hope your weather breaks soon! Keep cool! Talk soon, Mary
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Hi, Rhonda,
You have a lot going on and coming up, I will be thinking of you on the 15th as you have your Scan, and then onward with what comes next. Wishing and praying for the very best results!
Later, Mary
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Hi Val,
I agree with you about the growing things, the last few years they think it is spring too early, and then often end up getting damaged in a late freeze. The weather is different from when I was growing up here, and of course, I think that the weather when I was young is the proper weather pattern. Everyone else here seems to like it to be hot all the time! Not as hot as Kath has it, I hope.
I find the neuropathy really a trial, I just am having the hardest time accepting that it's part of my life now. It still makes me angry and frustrated and I haven't adjusted yet.
Have a good Sunday, I am going to the city with some friends to a play, in a lovely old theatre.
Talk soon! Mary
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Hello Gina,
Thank you for your post. I do think it is a good idea to get to the end of your chemotherapy before thinking about anything else and of course to give yourself time to recover. You can then think about what you want to do next.
Let us know what you decide.
I can understand that you are inclined to use natural means and that is the way I would go if I were in your position, but you are the only one that can decide for yourself.
I know that you have been looking after yourself and really doing what I have been doing ever since I was diagnosed, went through treatment and then post treatment. I do not think orthodox medicine knows that much about nutrition and I certainly ignored the food regime paper that they gave me. They promote dairy products and sugar, though they might have improved lately.
I do not believe in juicing with fruit, as it is too much concentrated sugar. It is much better to eat the fruit. Juicing vegetables may be OK, but not root vegetables. It is so much better to eat everything with as little processing as possible.
In the extracts from the article I posted about preventing breast cancer, from the magazine WDDTY, flaxseed works just as well at controlling oestrogen as tamoxifen and with no side effects. I was told yesterday, when shopping for seeds, that golden linseeds are higher in Omega-3 than the brown ones. I do not know if this is true, but it came from a reputable source.
I would not have thought that eating meat would make you put on weight. It is more likely the fat in it. I remember the Atkins diet from years ago. It was a high meat diet that made you lose weight. It has been revived lately with a new name, but I cannot remember what it is. Today it is believed it is the high carbohydrate diet that makes people put on weight and is causing obesity and diabetes 2. A friend of mine lost a lot of weight by cutting out bread, and potatoes.
That is all for today. I hope all goes well and that you will soon have chemotherapy behind you.
Fond thoughts.
Sylvia xxxx
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I just wanted to say hello to ChrisAsh, Maggie, Lamis, Amanda, adagio, Pam, 4everStrong and Marias.
I hope everything is well with all of you.
Michael and Tom, PeterandLiz, we miss you on the thread, hope all is well with you.
Best wishes.
Sylvia
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Val,
I did find a thread about neuropathy on this site, it is under
"Before, During and After Chemotherapy", and then go to
"A Vent about Neuropathy." There may be others, not sure.Mary
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Hello Marias,
I have just been watching the video in Spanish that you posted the link to, and I found I could read the Spanish very well. First of all I put the sound on and started to listen, but I find the sound on a computer is somewhat distorted, so I turned off the sound and just read the subtitles in Spanish. The main problem was trying to read the Spanish as quickly as the text. I know that Spanish people speak very quickly. I read the Spanish lines for about half an hour and then the text seemed to be repeating. It seems the video is said to last an hour, so I shall have another listen/read tomorrow. I got the clear message about Big Pharma and how it is pushing dangerous drugs such as antidepressants and anti psychotics and the harm that they are doing.
As far as I could comprehend, no mention has been made so far about organised crime, so does that come in the second half?
I have read about all these dangerous drugs before.
Thank you for that. How are you doing?
Fond thoughts.
Sylvia xxxx
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Hello Marias and Mary,
I just wanted to let you know that I Googled the book Medicines that kill and organised crime. This is the link that I found (There are many) and the contents made fascinating reading. I think this book was around in 2014. The review mentioned the book Bad Pharma by Ben Goldacre, which I did read sometime ago. This is on the same lines. It is really hard to believe what is going on in the pharmaceutical industry. Have a look and tell me what you think.
http://www.dcscience.net/2014/04/16/deadly-medicin...
Fond regards to both of you.
Sylvia xxxx
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Hi Sylvia,
When I spoke to my doctor over the phone she mentioned Carboplatin-she wants to add that to the Taxol.I only have 2 Taxols left and carbon isn't given weekly.
I just am concerned with waiting longer before surgery.
I know they do carbo every three weeks for 4 infusions so that is another 3 months.I think the lymph node that is tender and swollen is the same one that was already biopsies.Doctor also mentioned checking to see if it is still triple negative.
Rhonda
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Hello everyone,
Has anyone started watching the Coursera on line class that Inspiredby Dolce mentioned on Calling all TNs.There is a free course and a payable one.
Sylvia.
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Hello Everyone,
I have just completed 4 weeks of radiation. If my skin holds up, I'll have 1 more week, and then boosts. So far it's going well, though I can feel the tightness in my incisions, and can see redness now. The fatigue is not as overwhelming as with chemo, but I'm certainly going to bed earlier after a full day of work, and napping on days off as much as possible.
Both my surgeon and RO said that I am low risk for lymphedema, since only 2 nodes were removed. But I know that the radiation is a risk factor, so I may ask to be referred to a lymphedema physical therapist anyway. I have been doing my stretching quite often, and have gained almost a full range of motion since surgery. I've added as much walking and gentle yoga as possible, and may also look into the recommended massage to get the fluids moving.
Thanks Sylvia, for the recommendation to read about "Preventing Breast Cancer," and especially about the 25 grms a day of flaxseed. These are exactly the kinds of lifestyle changes I like to make. I'm off to do my stretching, exercises, hand wash, wig wash, and everything else to be done before I can get my nap, (!). Best wishes to everyone, wherever you are: in treatment, recovery, or supporting others.
Pam
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Hi to everyone,
I am now back from our short trip to Zihuatenajo, Mexico - it was a lovely time at a very peaceful and relaxing bed and breakfast in the mountain overlooking the bay, My husband had an unfortunate fall on a loose gravel trail which resulted in a very large laceration of his forearm - we had to call a doctor and have it literally scrubbed out because there was so much gravel deep inside - this happened our very first morning while on a hike, so it put a bit of a damper on our water activities since he had to keep the wound dry. However, at least he did not break any bones and he was able to sit by the pool and read lots. I went in the ocean only twice, which was lovely and warm. I am happy to be back home and we will be staying close to home for a while especially since my daughter is pregnant and is due towards the end of March, so I want to be close when the baby arrives.
Kath - so glad that your radiation is going smoothly, and like Sylvia said - keep cool - and hopefully you will not get any radiation burns. Those sunsets are stunning.
Gina - you have been very quiet of late, and I hope that you are doing OK - perhaps the cumulative effect of the chemo is taking its toll. Your blood counts should come back up once you complete chemo - but it can take a while and if you have radiation that can sometimes keep the white blood cells suppressed. Eating a healthy diet as you know is one of the best ways to help boost our immune system, and you seem to be doing that quite well. Let us know how you are doing and when your next chemo is?? I am glad that you get help with your little boy - it must be hard for him.
Pam - glad that your radiation is going well - you are getting so close to the end now. I had special massage done by a lymphodema specialist after my treatments ended - I didn't have lymphodema, but I didn't want to get it, so I found out as much about it as possible and ways to help prevent it. Someone once told me that we can get lymphodema as late as 10 years after surgery - and I found that quite discouraging, and not sure how much truth there is in that?
Sylvia - I had never heard that the golden flax seeds had different qualities to the brown ones. I used to take flax seeds faithfully for years, but right now, I am giving it a rest for a while. I do need to reread about the benefits of it in the various kinds of breast cancers. I had heard that it could be a hormone disruptor, but like I say I need to redo my research and find out the up to date news.
Best wishes to everyone going through treatment, and others who have various issues as a result of treatment. And for those of you who celebrate - Happy Valentine's Day - my husband and I have never made much of a deal of it, but I do know that some people like it.
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Hello everyone,
I have separated off the information in the poster. You should all be able to read the separated items.
Best wishes.
Sylvia
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Hello Pam,
Thank you for bringing us up to date about your radiotherapy treatment. It was good to know that all is going well and that you have just one more week to go of treatment. Radiotherapy does take a toll on a patient, so it is good that you are getting to bed earlier. I admire you for being able to work through all of this.
I think you are wise to do everything you can to prevent lymphoedema. It is a serious side effect of cancer treatment. It is a good idea to have a session with a lymphoedema nurse. She will take the necessary measurements around the arm to see what treatment she thinks you need. I had a little bit of swelling in the fingers and the upper part of my right arm after a mastectomy and removal of seven nodes. I had this even though I started the recommended exercises after surgery at the hospital. I saw the lymphoedema nurse sometime later and she gave me exercises to do, asked me if I would like to wear a compression sleeve and arranged a second appointment. I refused the compression sleeve after trying it on and thought it would do more harm than good. At the second appointment I was told everything was fine, to continue exercises and did not need to come any more. I did however request some physiotherapy at the hospital, went for a few weeks, was given more exercises to do and after about three appointments I was told I did not need to go any more.
After I had finished all my treatment, the breast care nurse who had been looking after me, asked me if I would like to attend a Moving On meeting. I went once, but knew it was not for me. At that meeting I did see women with arms bound up, some with fingers bound up and it was all to do with lymphoedema.
I have read that lymphoedema can occur any time after treatment finishes. I do not know if this is true. There is so much information flying around that I think a person just has to make up their own mind what they are going to do.
In my own case I have noticed that the top part of my right arm is slightly wider in circumference than my left one.
I do have a special brush that I use from time to time to do my own lymph massage. A specialist nurse should be able to tell you how to do this. There are special private clinics here that specialise in it. Here we can usually find them in clinics doing aromatherapy and reflexology.
It sounds as though you are doing everything you can to help yourself with this matter. This is a good thing, in my opinion.
I was so pleased to know that you appreciated the recommendation about reading Preventing Breast Cancer. Did you read it on line? It is interesting about flaxseed (linseed). The title is Look to lignans. "Flaxseed (linseed) is high in beneficial anti-inflammatory Omega-3 fats and fibre, and also contains 100 times more lignans than any other edible food. Lignans are also found in other seeds, vegetables, beans, legumes and dried fruits like apricots and prunes, and give plants their structure.
Lignans also have extraordinary anticancer properties. When oestrogen levels are too high, they block oestrogen receptors (like tamoxifen does) and oestrogen production by inhibiting the aromatase enzyme. Lignans also provide 'Significant protection against the development of degenerative diseases like cancer'.
Trials have shown that flaxseed oil rich in alpha-linolenic acid (ALA), can reduce breast tumour size 33% and slow cell growth, while increasing natural cell death (apoptosis), at least in animals. In an another animal study, mice fed diets containing flaxseed showed significant inhibition (by up to 38%) of tumour growth.
In humans, post menopausal women eating 25g/day of flaxseed or 50mg/day of lignans have the lowest risk of breast cancer."
I have printed all this, Pam, in case there are people who have not been able to read the magazine WDDTY or have not looked on line.
We have to remember that all of this has references on the side of the page to the source and they are reputable sources.
I can see that you are kept very busy making sure you are doing everything right to help yourself and I am sure this will pay off.
Thinking of you and wishing you the very best.
Sylvia xxxx
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Hello Rhonda,
I am a bit confused about what your doctor (oncologist?) wants to do. Since you have only two more infusions of your weekly Taxol, would it not make sense to finish these first and then ask to have the surgery, which will remove the breast and the number of lymph nodes necessary. You will then get a pathology report and find out whether you need to try carboplatin. It really has to be your decision. If it were me, I think I would want to get the surgery done. Is say this with hindsight because I delayed all of my treatment after diagnosis in June and did not start the treatment until November. I think I was lucky that everything then went well. I was trying other treatments in between, but I was told that I needed to have the orthodox treatment. I tend to think that surgery is the most important part of the treatment, but I do understand with larger tumours it makes sense to try to shrink them if it makes surgery easier.
If that were me I would be pushing for quick treatment. I hope this helps.
Fond thoughts.
Sylvia xxxx
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