Calling all triple negative breast cancer patients in the UK
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Hi Mary and Susie,
I love my water exercise class. It is called “gentle aqua” and, although it is low impact, I feel like I get a good workout. We workout in about 4feet ofwater and use different equipment. We use those “noodles” you sometimes see kids play with in the pool. We use them to float and kick. We also use styrofoam “weights” which actually weigh nothing out of the water, but with the resistance in the water, makes you feel like you are really lifting weights!
The instructor also has us stretch, which actually feels good in the water, and also later.
Water exercise is a great workout, especially for people with joint pain.
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Hello Pam, Val, adagio, 53Nancy, Kath and CocoonCat, Hanieh, Marias, Jags, and Sid,
I am writing to say that we do not hear from you that often any more and I do hope you will pop in to support those going through treatment and to let us know how you are post treatment.
I was wondering whether you explore the other forums as well. I regularly look up the active topics, of which there are usually six pages and often I explore some of the threads within the forums and have a quick look at some of the topics within the forums. I always look at lymphoedema as it is a common side effect of all three aspects of cancer treatment and can affect quality of life if not looked after. I also look at the alternative forum to see what is going on.
I hope all of you are well and of course best wishes to Gina who does not have internet connection all of the time.
At long last it is much cooler and it looks as though we may get some rain. I do hope so!
Wishing everyone the very best.
Sylvia xxxx
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Yep, noodles and water weights. The great thing about Aqua is that it feels easier than exercising in air (and no sweat!) and yet actually offers more resistance. My class is almost all old ladies, many of us very hefty. We also have a number of disabled women who need help in and out of the pool but are jumping about once they're in. I recommend it to everyone.
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Someone was saying on Twitter last night that her mother is having chemo at a hospital in Liverpool. When someone has their last cycle, they ring a bell as they leave and everybody applauds.
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I really like that idea Suzie! I have suggested it at the hospital I attended.
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Hello Susie and Helenlouise,
The idea of ringing a bell at the end of chemotherapy treatment and/or end of cancer treatment was mentioned on this thread some years ago now and it may have originated in Germany. I remember an American woman living in Germany and having breast cancer treatment posted about it on this thread and sent photographs. She posted on the thread quite a bit but disappeared when she came to the end of her treatment.
I think it is quite a good idea to mark the end of each stage of your cancer treatment in some special way. It helps you to get through treatment and gives you a sense of achievement and motivation.
With reference to recent posts about the benefits and enjoyment of water exercises, I thought you might be interested to know that in the book Let's Talk Lymphoedema - The Essential Guide to Everything You Need to Know by Professor Peter Mortimer and Gemma Levine, there is an appendix towards the end, Appendix 1: Exercises and it starts with "The non-weight bearing environment of water can be especially helpful for lymphoedema" and there are seven pages of pool exercises with diagrams showing you how they are done. It is worth looking at this as lymphoedema is a common side effect of each stage of breast cancer treatment.
I have often mentioned Professor Peter Mortimer but I think I should also mention Gemma Levine, a well-known photographer and author. She has written one particular book (2012) entitled Going with the flow, an inspirational guide and practical resource to living with cancer following her own diagnosis with breast cancer. Because of this cancer, she has lived with lymphoedema for a number of years.
Appendix 2 in the Lymphoedema book is entitled Nutrition.
I hope everyone is having a good weekend. It is much cooler today in Exmouth and is trying to rain but it needs to get more serious.
Best wishes to all.
Sylvia xxxx
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Hi, Sylvia
Like you, we are also having a cooler weather break; also like you, the rain is all around us on the map but the system seems to fall apart when it gets to us. Hoping we get something wet out of this.
When I was reading about Iscador, the author of the article said it was also good for prevention of cancer recurrence. That always perks up my ears, but I would rather have it offered by someone who knew more about it too.
It was interesting to read what you say about your government, it sounds very much like ours in the respect that most of the people involved don't really want to commit to anything for fear of not being re-elected. We have a big election in November, so we are hearing from people we haven't heard anything from in 2 years, probably because they have been hiding out just hoping no one will notice them. The people who are not afraid to speak out never shut up, now the political darlings seem to think socialism is a dandy idea. If one listens to them speak, it is obvious they have no idea what they are talking about, but never mind; it seems as if they paid no attention in their history lessons if they even had any history lessons.
How do venous ulcers form? Does there have to be an injury first, or do veins give way under the skin? As for the staining, I think too it is more dark brown than red. My husband also got this on his arms, that was not explained either, but he was on a lot of medication and I don't know if that was involved. I think I have had the venous reflux for a very long time, I am pretty sure it was genetic and aggravated by all the jobs I had when younger where I was on my feet in bad shoes for many hours at a time.
I am sorry you had an insect bite that turned nasty on the lymphedema arm, I hope that resolves soon. Even though I have been trying to be more deliberate in my movements, I still have a couple of large bruises. I usually have some cuts, bites and scrapes somewhere on my body. I really do love to work outside and the cooler weather has been allowing more of that.
I am interested in the water exercise, I am going to look out for what is available in my area. I am almost due for another shot in my knee, the last one was quite successful. It did not remove all pain, but made it bearable to be quite active.
Have a good Sunday, and beginning of new week! Talk to you soon,
Love, Mary
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Susie,
I belong to a gym too, the problem for me is it's about 30 miles away, and rather inconvenient. One time I happened into a room where there was a small pool with some ladies sitting around it, they told me I would have to have a doctor's prescription to have exercises there. So I rather forgot about it, but I might look into that some more. I am pretty sure my doc would prescribe it for me since I have been told by 2 docs that would be the best exercise for me. I have a lot of different things going on in my knees, but am not a candidate for surgery yet, so most other things are not great for me, although I do them anyway with a good cortisone shot. When colder weather comes, I will need some form of exercise I can do because now I am outside working a lot.
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Mary, I had a knee replaced 18 months ago. I was terrified, having never had surgery before, but it all went very well and wasn't as painful afterwards as I'd feared. I was using one crutch for a while. I'm sp glad I got on and got it done!
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Hello Mary,
Thank you for your latest post. I am always so glad to hear from you.
It has been a lot cooler here today and we had quite a lot of rain during the night.
I shall talk more tomorrow.
Take care.
Love.
Sylvia xxxx
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Hello Sylvia, Mary and all others.
I've been off boards lately. I had a setback to my onward progress. My knees and my lymphedema have been awful. I'm a few weeks out from another cortisone shot. My lympehdema due to summer and other things has been swelling terribly. Between therapy and trying to stay off my knees, (that are bone on bone) has been a challenged. So much pain.
I've now come off my own personal critical care list. I made things worse a couple of weeks ago by going to a venue that required a lot of walking and then ascending 6 flights of concrete stairs. There was a fire alarm and we could not use the elevator to exit the area. A big mistake, that I'm now paying for.
Enough with my whining. I've enjoyed all the pictures and catching up on posts. I will comment more after catching up.
Val
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Hello Mary,
As promised, I am now answering your post.
I do not know whether Iscador acts as a prevention of recurrence. I just know that it is used in other countries for cancer treatment. Is there really any proof about any product that claims it prevents cancer? I drink green tea and eat bitter apricot kernels, which are supposed to be anti-cancer, but is there any proof? Because there are stem cells in the body, which can hide away and then come back as cancer, I really wonder about any of these claims and I think it is hit and miss whether we get cancer and whether we get recurrence or metastases. As for me, personally, I shall never take anything for granted.
With reference to venous reflux, I am pretty sure that I have it and I do believe what Professor Whiteley says about it all. Since it seems to be a problem with valves not closing in a vein, it would seem to me that the only way to deal with this would be to solve the problem with the valves, so that they function properly and close. I know that varicose veins form because of this. For a long time varicose veins were seen to be the problem and they were stripped out. Now they seem to deal with these varicose veins by using laser or injecting chemicals into them. I cannot see how this is a permanent solution and is probably why the varicose veins grow back.
As for the brownish staining, I think this is a worsening state of the venous reflux. This is what I understand from Professor Whiteley's book and that the next stage is the venous ulcers, which sound pretty nasty.
In all of this I am still left wondering what the venous reflux minimal surgery is that Professor Whiteley introduced. I read very carefully what you said about your own treatment and am wondering whether this is the minimalist treatment, but you have to have several treatments in different parts. What do you think?
As for politicians and governments, I think that most ordinary people coping with everyday life are sick and tired of these privileged people. They get elected on mainly no particular qualifications and then earn huge salaries, get great expenses allowances and subsidised meals, travel etc. They can see only as far as the next election and will promise the moon to get elected.
These politicians are now trying to control social media, because it shows them up for what they are. The politicians are calling information on social media fake news. Well, I wonder what is all their propaganda but fake news.
At the moment the demons, we are led to believe are, Donald Trump, Vladimir Putin and Jeremy Corbyn.
Back to venous ulcers. I think they form from deterioration in the skin. Apparently the skin needs to be kept moisturised, at least twice a day, to try to keep venous ulcers at bay.
I am finding the lymphoedema arm a real nuisance. I have had two bites and they take ages to disappear, but the big fear is that they may cause cellulitis. I have not been wearing the compression sleeve in the heat, but I do not find it makes much difference to the size of the arm. It could be that I am keeping everything under control by keeping the arm active. I shall have to be careful when gardening and probably only do it when it is not hot and sunny and I can keep my arm covered. I need to do this as well because of the problem I had with the mole.
I would think the water exercises can only be beneficial. I am not sure whether I can put them on the thread because of copyright but I would think that the book on lymphoedema is worth buying for all breast cancer patients, because of the risk of it through surgery, chemotherapy (taxane drugs) and radiotherapy.
We have had some more rain this morning but the forecast is for more heat by the end of the week.
Have a good week.
Love.
Sylvia xxxx
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Hello Val,
Thank you for your post and I was sorry to read that you are having so much trouble with your lymphoedema and your knees. I shall write more later.
Love.
Sylvia xxxx
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Hello Val,
I do hope cooler weather will help with your lymphoedema. I have not been wearing my compression sleeve at all during June and July I have not had any problems with swelling. Am I just being lucky? I do measure and compare arms and there is virtually no difference.
I do hope you will get the treatment for your knees. There is nothing more wearing than being in constant pain.
Sending you best wishes,
Love,
Sylvia.
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Hi everyone,
I am new to this forum. My mum got diagnosed with triple negative breast cancer about 6 weeks ago. She is 81, fell down the stairs and broke her wrist - was in hospital for an op on her wrist when nurse noticed some sores on her breast. Since then it was confirmed as breast cancer, full mastectomy and lymph node removal. She has triple negative breast cancer and had 11 out of 21 nodes positive. We are seeing oncologist on Thursday for first appointment and awaiting results of CT and bone scans. Its a very scary time as I am an only child (I'm 49) and we only lost my dad 2 years ago so I am not ready to lose my mum yet ! They have said she will need radiotherapy and to discuss chemo but we have to think about her quality of life too. She is otherwise quite healthy and is young for her age. Any thoughts about just having the radiotherapy and no chemo ? Any support or wise words would be very welcome. Ellen. xx
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Hello Mary,
I am posting the following links for you to have a look at and give me your opinion.
https://www.thewhiteleyclinic.co.uk/prices/
As you know, I like to research thoroughly. Reading through this extra information following on from reading the book about venous reflux, by Professor Mark Whiteley, I think the treatment that you have had for your veins may be the same as is being proposed here. As I have said, it is not offered, so I have been told, on the NHS until ulcers appear and then I am not sure what is done.
The treatment being offered privately will add up to a lot of money and appears to require a lot of visits.
Given that in the book and in these links, it states that the problem is with valves not closing, I do not get the impression something is done with the valves here. I have also learned through these links that varicose veins that are hidden are the most dangerous.
According to what I have read, the first thing you need is a venous duplex ultrasound, which tells you which veins are working properly and which are not. It also states that this should be done by a specialist and not a GP, who may not pick up on things. Have you had one of these?
As you know, I always value your opinion.
How are things going with you?
The thread has gone quiet again but it is summer holiday time.
Love.
Sylvia xxxx
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Hello Ellen,
I was so sorry to read about what is happening with your mum and I do hope we shall be able to offer some comfort and help to you. We do have a lady on the thread, Flora, who is also posting on behalf of her mother who is going through treatment. If I remember correctly her mother is 73. Her mother had had surgery and after getting different opinions it looks as though the mother will have chemotherapy now.
I was very surprised to read that your mother has breast cancer with triple negative receptors, because we keep being told that this affects mainly younger women, but obviously there seem to be many exceptions.
Please let us know how you get on when you have an appointment with an oncologist on Thursday. It seems to be that chemotherapy is often suggested with triple negative breast cancer, but I think age will be taken into consideration with this because it does take a toll on people.
Please let us know what the results of the CT scan and bone scan are.
I can understand how frightening this is for you, especially as you are an only child and your dad died just two years ago. Just tell yourself that there is treatment and try to be optimistic that your mum's medical team will do their best for her.
I understand that you have to think about your mum's quality of life when it comes to radiotherapy and/or chemotherapy. Chemotherapy is systemic so will destroy cancer cells throughout the body and radiotherapy is usually used at the end of treatment to mop up any stray cells.
The decision about whether to have just radiotherapy and no chemotherapy is a hard one to make. Wait to see what the oncologist has to say.
Just this month someone I know, of 92, was shocked to be told she had breast cancer. She has hormonal breast cancer and has had surgery, is on anti-hormonal medication, and waiting to hear about radiotherapy. She told her medical team that she does not want chemotherapy.
She also had a fall not long before the discovery of breast cancer.
There have been posts from time to time here talking about breast cancer following some kind of accident or injury.
I do hope this helps.
Sending best wishes to you and your mum.
Sylvia xxxx
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HI, Val
It's good to hear from you, but I"m sorry you are having so much pain. At least your knee will be fixable, you say you are a few weeks away from another shot, do you have knee replacement plans coming up too? Bone-on-bone usually means it's time for that.
I agree with you, I think the hot weather would aggravate lymphedema. In the summer when it's very hot, I often feel slightly puffy, but I did before all the cancer and its' treatment too. As an example, when it's hot and steamy often my rings (if I wear them) will be tight, whereas in the winter when it's cold they sometimes fall off my fingers. It's probably a better idea, on very hot days, to stay inside in the AC. And I know how hard that is, I also like gardening, and weeding, and messing in the dirt. Often we have to be on our knees for that, and it is a painful position at times. (I'm not bone-on-bone, but have other knee issues.)
What kind of therapy do you do? For the lymphedema or the knees or both?
Concrete floors are the worst, I don't even like walking on them for very long. Standing on them for any length of time is not good either.
I hope you will feel better soon, we have been having cooler weather for the last couple of weeks, I hope it comes to you.
Talk to you again soon, love, Mary
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Hello Everyone,
Ellen, I'm so sorry to hear about your Mom. Sylvia has given you the best possible advice, which is to hear what the oncologist has to say. I can tell you that this can be the very scariest part of cancer - which is the part before you have a plan of action. I was there myself, and managed well during the treatment. As far as I know, I'm doing fine now. I had chemo, a double mastectomy, and radiation, but I'm younger than your Mom. If she gets chemo, I highly recommend the "starting chemo in the month of..." boards here.
To answer your question, Sylvia, that chemo board was a lifeline for me. That group is now on Facebook, and moving forward. At this point, we don't post as often - which is understandable. I also read the Triple Negative boards here. I read the "So...what's for dinner" board as well. I really like that one. It's just a bunch of survivors and others who are going through treatment, and not really talking about cancer at all. It's strangely comforting.
Mary, Speaking of violins in rock bands, I've been thinking about you. My friend left me the ELO "Out of the Blue" double record from 1977. I didn't realize that I was a fan, but I remembered so many of the songs, and I've listened to it more than once. Then there was a massive concert at Wembley stadium, and it just aired over the weekend. They had 2 cellos and a violin on stage. People of all ages there were singing, dancing, and having the time of their lives. It's excellent, if you ever get a chance to see it.
Here's a picture that I took earlier in the summer, before it was too hot to walk to the arboretum on our campus.
Pam
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Hi All,
Thinking of you Ellen and Flora, as you navigate these early days of treatment with your mothers. This thread is a great place to come for support. The women here have been so helpful and many of my questions have been answered by reading through the posts here.
I started radiation treatment this week. Susie, you must not be too far behind me? So far (two treatments in) it hasn’t been bad. I’m only on the radiation table 5-10 minutes. The worst part is the 45 minute drive each way to the hospital. I don’t have any redness on breast yet and have been using plenty of creams to keep it moisturized.
The weather continues to be hot and windy where I live in California. We have many wild fires raging throughout the state. Although the closest fire is 50-100 miles away, the air quality is terrible. We haven’t seen the sun in days due to the smoke and haze from the fires. Too many homes and lives have been lost and some fires are still out of control.
I’m gettin ready to go to my water exercise class (indoor pool, thank goodness) then begin the drive to treatment.
Thinking of all of you,
Monica
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Monica, were you recommended Aloe Vera for your radiotherapy? I spoke to someone a few months ago who had radiotherapy and she swore by it. I have bought a bottle in readiness but am going to attend a 'Preparation for Radiotherapy' class at Maggie's on the 23rd where I hope to get plenty of advice.
Susie
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Hi Susie,
Yes, my radiation center actually gave me a tube of 100% pure aloe Vera at my consultation visit. I keep it in my bag and slather it on my breast right after treatment in the dressing room. It feels very soothing. I also bought a larger bottle for at home and use it several times a day.
I also bought a tube of calendula cream and use that on my breast, too.
When will you be finished with chemo? Will you have your picc line removed after?
Best wishes,
Monica
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Hello Sylvia, Mary and all the members here
Again I have not been here for a while and the thread has been so active that I can not catch up with all the posts.
Sylvia, my Ielts results came and my score band was 8. My speaking and listening were 8 and my reading and writing were 7.5. Now Im considerd very good user of English however Im not totally satisfied with it. Yet, I got the highest mark among all those who have taken this test.
Mary, I have some friends in Canada but no relatives. The economic situation in Iran is getting worse everyday and the lives of people are becoming so desperate that there remains no choice but thinking of settling somewhere else. I think I should try to do my best for the future of my daughter. We all despise our politicians who have made us a hell in our country. We are really tired of all their policies which are the main causes of poverty and war.
I have made myself extremely busy with some extra classes and also taking up French. I have always loved to learn French and now I think the best way to distract my mind from all that has happened to me is by learning something new. I It s not easy at all but I really enjoy it.
This is a picture of me I took yesterday. Sorry for my long delays. Im always thinking of you all and try to read all your posts soon.
Love
Hanieh
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Hello Hanieh,
It was so nice to see you back on the thread. I have been wondering how you have been getting on, especially with the exams you were taking. I feel so very proud of you with the results that you obtained and congratulations on getting the highest mark among all those who had taken the test. There is not much difference in your test results so that shows you know how to speak the language, that you understand it when it is spoken and that you can read and write the language. What more can you ask? Well done!
I am always very interested in listening to people speaking in English when it is not their first language. Having taught English as a second language in France and Morocco, I can almost guarantee the mistakes they will make. Having taught French as a second language it is the same. When I listen to non-native French speakers, especially when their first language is English, I can feel the mistake coming on.
I was very interested to know that you are going to start learning French. It is a beautiful language. If you do get to Canada, especially Ottawa or Montreal, it will be good to know some French. Canada is officially a bi-lingual country, French and English.
What is your next step now?
I do hope you will be able to catch up with the posts. We do have new people all the time and they all need support and tips and experiences from those of us who have made the cancer journey. We have Susie and Flora from England, Monica from the US, and Ellen who has just posted once to introduce herself. I do not know yet where she is from.
I am sure that learning French will take your mind off all the things that cause you stress.
Thank you for the photograph. You look really good.
Try not to stay away too long.
Love.
Sylvia xxxx
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Hello Susie,
I am just popping in to say that I also used Aloe Vera gel when I was going through radiotherapy. I also used Calendula. I found them to be excellent.
Take care.
Love.
Sylvia xxxx
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Hello Pam,
It was nice to hear from you. I was interested to know that you also look at other threads. It is a good way of keeping informed and realising what others are going through. I feel great concern that so many women are being diagnosed with breast cancer.
I was interested to know about the group on Facebook. Some years ago when some of the women on bc.org had decided to have groups on Facebook I was asked to join. I declined because I prefer bc.org which does have some rules and does have the Moderators to keep an eye on everything. I know that for younger people Facebook and Twitter have become a way of life, but it is not something that I want to join.
I was interested to know that you read the thread "So...what's for dinner". I think it is a good idea to have threads like this where members can get away from cancer and have a bit of relaxation. I think on this thread we have a good mixture of this. I often have a look at the thread which is about reading books not related to cancer and the gardening thread if I happen to see them when I find the time to go through the active topics.
What is that intriguing picture that you have posted here?
Take care.
Love.
Sylvia xxxx
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hi everyone
Have had a busy couple Of weeks and a really great time in Melbourne other than hitting a Roo and wiping out the front of my car! Thank goodness no one hurt. Having been doing well but right sided thoracic back pain for the last couple of days has brought me to that dark place again! We are expecting some wild weather here so I’m hoping it’s arbut scares me so much!
Celebrated my 57 th birthday last night with my family which was lovely and I managed to forget for a little while. Off toDubbo next week and have started my pharmacology unit at uni
Hope everyone well
Cheers
Kath
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Hi Monica,
Final chemo session Friday 10th August and my PICC line will be removed right after. I am seeing the on cologist on the 8th and hope to get the dates for my radiotherapy then.
Thanks for the calendula tip. I shall get some.
Susie
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Hello Kath,
I was really happy to know that you have had a busy couple of weeks and that you had a great time in Melbourne. You have to do everything you can to stop your mind going to those dark places.
How was the kangaroo? For me, as an English person, it is strange to think of kangaroos wandering around. Here we have enough trouble with squirrels, seagulls and the occasional fox!
I do hope your weather is not too wild. We do seem to be having extremes of weather worldwide. We are supposed to be having a heatwave again.
Congratulations on your 57th birthday and it is good that you were able to have a good celebration with your family. Focus on all these pleasant occasions in your life and stay away from those dark places.
Concentrate on your pharmacology courses at university and let us know all about them.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Susie,
We shall all be thinking of you on Friday August 10th when you finish your chemotherapy. I would be interested to know how you feel about your chemotherapy journey. It can be such a different experience for each one of us and we can all learn from one another.
I thought you might be interested to know about a rich moisturiser that I have found to be among the best of those that I have tried. It is called Dead Sea Spa Magik Rich Moisturiser – a nourishing moisturiser to re-hydrate all skin types. I use it on my lymphoedema arm in particular, as it needs to be kept well hydrated.
Sending you best wishes.
Love.
Sylvia xxxx
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