Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
I have been thinking of you this week and hope that you have had good news and that you have not been overdoing things.
In the supermarket this week when I was buying my usual supply of berries, I saw a new berry introduced there – kiwi berries. They are green and the size of a small grape. I bought some and found them delicious. They had a similar texture to a gooseberry but much sweeter. They are full of vitamin C. Will they become the next 'superfood'?
This country is in crisis. Boris Johnson, our unelected Prime Minister, is going to shut down parliament. There are protests going on and huge petitions being signed against it all.
Take care, Mary.
Love.
Sylvia xxxx
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Hi, Sylvia
It's been another busy week, yesterday I kept my appointment with the Orthopedic Doc who is working on my shoulder. It has been a month since she injected the site with steroids to bring down the inflammation and fluid that had built up, apparently because a piece of the surgery screw had broken off and migrated to another part of my shoulder, causing irritation, pain and stiffness. So now I can raise my arm, but it doesn't feel good. If I do much of anything I have to sit on the couch with ice packs to numb the area. We decided that I will have another arthroscopic procedure to, hopefully, remove the offending piece of screw without causing damage to anything else. Please wish me luck that she doesn't find anything else wrong in there. Ideally it should be a quick easy process. It is set up for the 19th, since I will be gone next week. Sis-in-law and I are heading for the Southwest to the high desert and mountains of Santa Fe, Taos and other interesting places. This little trip was meant to celebrate my birthday and also to celebrate being pretty much finished with this shoulder process. I guess I will still have my birthday, if not the other thing.
Another thing that happened this week; I think I have mentioned my friend who was diagnosed with lung cancer about 2 months ago. She had about a third of her left lung removed, to get rid of 2 tumors. She was Stage 3 at the time. The docs gave her 6 weeks to recover, then put in a port for the chemo infusions. She was very unhappy with the port, and returned to the MO to complain. She was told it was all good, and she was scheduled to start chemo yesterday. She went through all the pre-chemo chat, and was also told that one of the drugs she was supposed to get had not been approved by Insurance. So a lady came over with papers to sign, the papers stated she was presenting as a Hardship Case, or something like that. They told her she would have the other 2 drugs that were supposed to be administered and they would have the refused drug (Keytruda) in time for the next infusion in 3 weeks. So she had her pre-chemo drugs, the steroid and the anti-nausea etc. Then they started the Taxol and it ran about an hour and a half and the nurse noticed her chest was swelling. The port had failed and the Taxol was leaking out into her body. She was then taken for a CT scan which showed the liquid dispersing out into the area. The doc told her that they would put in another port, but she has refused. Today her niece took her back to the MO to talk about other options and to nail down a new plan. She did not get all the Taxol and got none of the scheduled Carboplatin. And not the Keytruda.
She is so disheartened, they told her if she didn't have chemo she had an 85% chance of NOT being alive in a year. I will call her later and find out what happened today, but it just sounds like a nightmare. I never had a problem with my port, and being around all the other people having infusions I never witnessed anybody around me having a problem, but she certainly did. And for all that failure, she was still kept there from morning till late afternoon. I hope and pray things get straightened out very quickly.
I imagine you are very glad when all the tourists leave, Exmouth must be a peaceful place when that happens. Do you go for walks on the shingle? (Hope I'm using that word properly.)
I hear all the Exercise, exercise and I always feel sad, because the way things are I just cannot exercise the way I used to, unless I get some body parts to be less painful. I find that I am quite envious of all the garden talk, I used to also have a big vegetable garden and about now I would still be canning and freezing things for winter. My flowers are pretty pitiful and my yard looks a mess because my shoulder has not allowed me to do the things I did to keep it tidier.
All that being said, I am looking forward to getting away and seeing some new sights. We will leave here on Sunday and return at the end of the week, and I'm quite sure the weeds will all still be there!
It sounds like you will be spending part of the weekend with Marcel Proust, and Derek Jacobi. I like Jacobi, I recently watched the 2017 version of "Murder on the Orient Express" and there he was, playing the role of the valet for the villain, who was played by Johnny Depp. Kenneth Branagh played Poirot. I haven't seen him in any of his theater performances, that would be good.
I am off for now, but never far away!
Talk to you later, love, Mary
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Hello Sylvia,
I'm sure everyone here will have seen that HRT is in the news again. I had fibrocystic breasts for many years prior to the menopause and was told by a registrar and later by a consultant breast surgeon that I should never risk taking HRT. Fibrocystic breasts are reasonably common and do not cause cancer. My own feeling has always been along the lines of 'don't mess with your hormones', they're far too complex. GPs seem very keen on HRT because the risk of stroke and osteoporosis post menopause outweighs the small (?) risk of breast cancer.
Johnson is as dangerous as predicted. The Eton toffs are now running the country openly from the front line. Just when we need a strong Labour opposition we have Corbyn dithering on the sidelines, what a mess.
The children will be back in school very soon and we shall have our beaches back.
Wishing you and Raymond a peaceful weekend.
Love,
Gill x
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Hi, Gill
I posted the latest news on my shoulder above in post to Sylvia. With any luck at all, the next step will be a simple process with a nice, neat conclusion to it all. Is that possible, I wonder, here's hoping!
For all that you have been through since being diagnosed with BC, I think you are doing very well. This is speaking as someone who knows you through posts only, but I think you have many good reasons to believe you will carry on with life and all of this will be only a dim memory. It sounds as though you keep active, you have husband, family, dogs (cats?) and looks like you live in an idyllic spot. You certainly did go through a rough spot, perhaps it's nice that diagnosis and treatment seem unreal. I have been finding that as my friend suffering from lung cancer is going down that path, it is bringing all my memories of treatment back, and I had really stuffed those memories far away.
"God is a tourist attraction", I wonder what the bishop was trying to say? Perhaps he is trying for the Catholic Disneyland concept? I have my ideas for Vatican Art Auction, and perhaps clearing out many of the clerics who roam around the Vatican, they could be sent to the hinterlands of America to oversee some rural parishes, it would be a culture shock for them! I do agree with you that the problems seem to come from top down, and it seems the Main Clerics are treating it the other way, always trying to twist the parishioners into knots to solve the problems. Oh, well, time will tell.
I look at the news this morning, and we have a hurricane to worry about now, for once there are no errant politicians taking up all the space. Hurricane Dorian looks about to hammer Florida, they are unsure which part of Florida will bear the brunt so far.
Have fun in your garden!
Love, Mary
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Hi, Helenlouise
I'm very glad to see you feel up to going back to work, might be the best thing to be distracted from all the medical hoopla. And I see you are looking forward to spring and things greening up, I forgot for a moment that you are in Australia so spring is right around the corner.
I'm glad the Lyrica is working for you, I have seen the advertisements for it, it seems to cover a lot of bases when it works well. I am sorry the wound hasn't completely healed as yet but things sound promising, you say it is clean and the pressure bandage is off. I don't blame you for not wanting to deal with another surgery right now (grafing), I hope you prove the community nurse wrong and the wound heals up as you get back to living life.
Good luck with everything, and I will be interested to see how things progress.
Love, Mary
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HI Gill
Since you mentioned Hormones in another post, I thought you might be interested in this. My annual visit to the Gynocologist was in May, she tried to examine my (very dry) nether regions, and announced that there is now a fix for dry, atrophied vagina that is safe for those who have had BC. I was very dubious and said I would not use anything not cleared by my MO. She said she would do so, and about a week later a box was waiting for me at the pharmacy. I picked it up. and took it home to find out about it. One of the first things you see is this, "Not to be Used by anyone who has, had had, or think they may have BC." I read on, and find it is not a hormone, but once used, it becomes hormone in the body! So I was afraid to use it, and I did ask my MO again what she thought of it. She said it was thought safe for me to use because it is a microdose, (4 mcg), inserted in vagina twice weekly. AND because I did not have an Estrogen Positive BC. I am still afraid to use it. The name of this product is IMVEXXY. If anyone is curious.
I did use oral hormone therapy after my hysterectomy, for many years. I had stopped usage at least 10 years before BC diagnosis, but had begun use of a vaginal insert. NOT the one discussed above, which is new, apparently.
Thoughts, anyone?
Later, love, Mary
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Hi Gill,
There was a very interesting discussion about the HRT headlines on The World at One on Radio 4 today. It went on for ten minutes, which is a very long discussion for a news programme, and there is a great deal more to it than the screaming headlines.
I suggest a listen on the Radio iPlayer. It starts about 25 minutes in.
Susie
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Hello Mary,
Thank you for your latest post. I do hope that all will go well when you have another arthroscopic procedure to remove that offending piece of screw without causing damage to anything else. I shall be thinking of you and wishing you the very best of luck that there will be nothing else amiss and that you will be fine and able to get on with your life. We shall all be thinking of you on the 19th.
I do hope that you and your sister-in-law will have a good break. You have certainly earned it. I see from my diary that September 19th is a Thursday so it is just under three weeks away for your surgery. If you can, send us photographs of Santa Fe etc. It sounds like a very interesting region.
I do remember that your birthday is in September and that it is very close to mine. Is it September 2nd? Mine is September 1st and I seem to have people close to me with birthdays in the early days of September. Am I drawn to Virgos??
I find it hard to believe all that is happening to your friend who was diagnosed with lung cancer about two months ago.
How awful to be worrying about whether you are going to be getting the drugs that you need. How awful as well that the port failed and that the paclitaxel (Taxol) was leaking out of the port into her body. I wonder what the outcome of that will be? I do not blame her for not wanting another port. What will happen now? I have been reading that carboplatin has really nasty side effects, so I cannot imagine what it must be like to have Taxol and carboplatin together. The name of the drug Keytruda is familiar to me because my friend and neighbour must have had it for her metastatic breast cancer. She seemed to have so many different drugs for metastases that I could hardly believe it.
I do hope your friend manages to sort things out and to get well again.
I did have trouble with a port. I had my chemotherapy before my mastectomy but did not have a port, just a cannula. When I had the mastectomy surgery my oncologist suggested that I had a port installed at the same time because she thought I might need more chemotherapy later. I had it done. What she did not tell me was that it would have to be checked and cleaned every three months. The first time I went to have it checked all was fine. The second time the nurse could not flush it. Consequently I had to stay at the hospital, get the area x-rayed and was told the port had a kink in it and I would have to have it removed at some point under general anaesthetic. I was allowed home but then had to go to hospital for the morning to get it removed. I was so fed up with it and told my oncologist I wanted nothing more to do with ports! I was a bit annoyed about it all because in the end I did not need any more chemotherapy.
Exmouth is not the quiet little town we moved to nearly 18 years ago, there are too many people and too many traffic problems. We do not go to the seafront any more because the powers that be are doing major works there and we do not like it any more. We are not far from it and it is quiet for the moment but there is so much building going on that we feel we are on borrowed time. This country is so overpopulated. The beach is not shingle, it is sand.
Have you had tie to read the latest email from Chris Woollams? Yes, the first article was all about exercise, but remember a gentle walk is good enough.
I did manage to listen to seven parts of the Marcel Proust novel and it certainly took me back to my university days. I have now discovered that BBC Radio 4 will be re-broadcasting it in ten weekly episodes on a Saturday evening, so that will be more relaxing. It starts tomorrow.
That is about all for now. Happy Birthday and take care.
Love.
Sylvia xxxx
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Hi Susie,
I've just finished listening to the HRT piece on 'World at One'. I hadn't realised that the risk of heart disease was so high for those of us who haven't taken HRT. The gynaecologist was very convincing and certainly more rational than the other two women. I don't think the issue of breast cancer and HRT was fully addressed, in fact it was sidelined by bringing in the connection between breast cancer and alcohol, sugary drinks, obesity etc. It was worrying to hear that after possible heart damage caused by chemotherapy we also have to consider the dangers of not taking HRT. Life's hard on women, seems we can't really win.
Enjoy the weekend.
Gill x
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Hi Gill,
I thought that the salient point was that deaths from all causes are lower in women who take HRT, although I do wonder if that's because women taking HRT may be more educated/middle class/able to engage sensibly with their GPs. It's also important that HRT seems to give protection against bowel cancer since, given the choice between breast or bowel, I'll stick with breast thanks!
Susie x
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Hello Gill,
I do agree that we are living in dangerous unpredictable times and that in this country since 1979 and Thatcherism the country has slowly been undoing all the good work that was done by the Labour Government in 1945. I am just glad that I am at the end of my life because I dread to think where this country is heading.
As for HRT, I have never taken it and would never have taken it. There is a lot of scaremongering going on in order to sell drugs in order to make money. My information from something I heard on the radio was that HRT with oestrogen only could cause breast cancer, and that when progesterone was put into the mix then ovarian cancer was more likely. All this pills are foreign to our body and goodness only knows what they are doing. I agree with what you said about not messing with hormones.
I have a friend and neighbour here who was on HRT for a very long time and she attributes her breast cancer directly to this drug. Fortunately she has survived her breast cancer so far.
I do hope you have a good weekend and make the most of disappearing summer.
Love.
Sylvia xxxx
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Hi Susie,
I've just been looking through the British Heart Foundation's various information sites. HRT appears to increase the risk of blood clots and DVT when taken in tablet form. The gels, creams etc are much safer, but prescribed far less frequently. I do think the information given by the three women on 'World at One' was somewhat biased and economical with the truth. Aspirin probably gives more protection from colon cancer, but also has side effects. NHS advice on protection against osteoporosis is clear. While HRT may help while women are taking it, most women stop HRT before the age of 60. It is after 60 that bone loss occurs and the benefit of possible protection is lost.
I do worry about the risks to my heart caused by chemotherapy, but wouldn't take HRT if I had the choice simply because of the risk of a blood clot. I do know many women who have taken HRT and have been very happy with it. I guess it's a case of choose your poison. So much seems to be down to luck and the genes we inherit.
Gill X
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Hello Gill,
I read your post to Susie and I think the best attitude we can have is to try to put what has happened to us and what my happen to us out of our mind and to live each day as fully and as happily as we can.
My oncologist did tell me that the docetaxel (Taxotere) could cause heart problems. I did have an ECG before chemotherapy and all was well and I had another when all the treatment was finished and I was told all was well. Whether it was or not, who knows? There are so many different scans you can have to see if you have heart problems, but if there is a problem post treatment, what can you do? All you can say is that the chemotherapy drugs have probably kept you alive. It is the same with radiotherapy. My oncologist told me that radiotherapy can cause inflammation of the lungs. I still felt I had no option but to go through with it.
I was wondering whether you could post the details again about the bra that you bought at M&S and that you have found so comfortable. I feel that I need to change the particular bras that I have been wearing all this time. The prosthesis seems to be pulling the cup down and making the lower part of the bra fold under me and irritate my skin.
I am having a quiet day today for my birthday. I did not feel like doing anything special.
I hope you have had a good weekend.
Love.
Sylvia xxxx
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Hi Sylvia,
I think you're thinking of me to do with the bra. This is the one I now wear:
https://www.marksandspencer.com/total-support-stri...?OmnitureRedirect=t338094a
Susie
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Hi Sylvia,
Happy birthday Sylvia. I often save the 'doing something special' for a later date when I feel more like going out.
The bra is M&S post surgery sumptuously soft padded full cup A-E £20. It's comfortable and gives those of us with a small bust some sort of shape.
I'll write to you and Mary tomorrow, today has been a bit of a rush to cram everything in.
Love,
Gill x
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Hello Gill,
Thank you for that information. I am going to have a look at the bras.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for that information about the bras. It was good of you to take the trouble.
If you would like to put the post back I shall have a look at it as well.
That kind of information is useful for anyone else looking at the thread.
I do hope all is well with you.
Love.
Sylvia xxxx
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Hello Sylvia,
I've just been re-reading the very alarming news about Boris Johnson, his ongoing lies, the closing of Parliament at this critical time in our history and his plan to deselect MPs who disagree with him. It's very concerning that today he has cancelled a prearranged meeting with these MPs. Even more worrying is the bullying, swearing and threatening behaviour of Dominic Cummings towards Civil Sevants. Does Johnson think he can get away with all this without ever addressing Parliament? I generally dislike politicians being compared to Hitler. However, this is how fascism begins and there are certainly parallels with pre-war Germany here. Most of my friends seem to be Tories which makes life very awkward at times.
There's a piece in the Guardian this morning regarding the late diagnosis of stage 3 and 4 cancer. Apparently there are now one in ten diagnostic posts vacant. Some hospitals no longer give patients a stage, I was told by my surgeon that he hadn't staged my cancer. The medical oncologist at the London Cancer Centre did give me a stage, though I'd already looked it up online.
I do hope that the bra is suitable for you. I also looked at the bra that Susie recommended and it has good wide straps, which I like, also a supportive back.
I've just had Chris Woollams' latest newsletter. The rainbow diet and eating seasonal vegetables is reinforced and there's some information about vitamins. I will have to look at it next week as I'm away on grandparent duties most of this week while my daughter and her husband move house. Looking after a three year old and an 18 month old is a real test of stamina a patience.
I keep wondering how Marias is. I expect many of us here are thinking about her.
Hope that you and Raymond are enjoying the peace now that the children are back in school. I'm looking forward to walking along an empty beach again.
Love,
Gill x
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Almost belated happy birthday Sylvia. I hope you have had a lovely albeit quiet birthday. Sincerely best wishes to you
Much to my (& everyone else) surprise my wound is covered with fresh skin. So no need for water proof dressings and soon to give up nurses and surgeon review. I have a deep cavity that has no real flesh between my scar and chest wall. I did joke with surgeon that it will be tricky when I go topless at the beach (with the sand)! She totally missed the point. I am very happy the wound saga is close to an end. Now to wean off the pain killers and learn to manage my lower back which is much better.
I'm on the countdown to going back to work, so making the most of the sunshine that now has some warmth. I am employed as a trainer in our public vocational education system. I train trainers which I really enjoy but the current mandatory qualification and a organizational restructure has made the work quite challenging. I suppose if it wasn’t challenging it wouldn’t be called work
. My husband and I spend half of Sunday and today trying to erect a small gardened shed. still not done. We are having all sorts of problems interpreting the instructions. I had to giggle much to my husbands chagrin. Whoever wrote the instruction manual really needs learn how to write a more precise task breakdown. It will be very handy once we work it out.
I hope everyone is doing well.
Much love xx
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Hi Mary,
I've been researching IMVEXXY and am very impressed with the list of contraindications! My own feeling is that it depends how much discomfort vaginal atrophy is giving you and balancing that with the risk of oestrogen fed breast cancer which is probably tiny in your case. Having said that my GP offered me an oestrogen cream prior to my last cervical screening and I refused because I didn't want to take any chances with hormones. Ha, then I got triple negative breast cancer.
Hurricane Dorian looks terrifying. I do hope that you don't have relatives or friends anywhere near. I just can't imagine the sheer destructive power of a hurricane, we have nothing quite like it here. However, I do remember 'the great storm' of 1987 when 18 people were killed and millions of trees uprooted. I took my children to look at a huge horse chestnut tree that had fallen and had crushed everything in its path. They were in complete awe and very quiet for once. As always, we are completely defenseless when nature kicks off.
I'm keeping my fingers crossed that your shoulder can be fixed quickly and simply and certainly in time for your birthday trip to the South West. It must be frustrating not to be able to do all the lifting and stretching that gardening requires, but the weeds will slow down and stop growing in a couple of months time with any luck.
It's all very quiet here now that there's no children around. Just the time to go on holiday I thought, but the catteries are all booked up for September and the cats can't really be left for someone in the village to look after for more than one or two nights. You asked if I had a dog, I did have until a few years ago and recently I've been trying to persuade Michael to go and have a look around the local dog rescue. No luck so far, but I'm working on it.
The Anglican Cathedral feels that the helter-skelter and play and pray idea went well, probably because a huge amount of cash was raised. Next Summer a massive dinosaur is to be sited in the knave. At least a dinosaur will be quiet I suppose. I absolutely agree that the Vatican should sell off some, if not all of its art, not just so it has the money to properly fund churches, but also to show a little more humility in the eyes of the world.
I'm keeping my fingers crossed for your shoulder. Try not to overdo things.
Love,
Gill x
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I had an appointment with my oncologist today for the Add Aspirin Trial and took the opportunity of asking her about blood tests which might pick up a recurring cancer before there are any symptoms, which I read about in the Times about a month ago. She says that they're doing a trial for people who have literally just finished treatment (if that applies to anyone on here).
Susie
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Hi Susie,
That sounds interesting. I'm 7 months out of treatment so too late for me, but there could be others reading your post who might want to see if they can get on the trial. I'll ask my surgeon about it when I see him on 13th of this month. Friday 13th!
Gill x
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Now I think about it, she did say that this was being trialled specifically on us triple negatives. Presumably because we're more likely to recur in the short term.
Susie x
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Hi Helen,
So your wound's finally stopped playing up and decided to heal, that's so good to hear after all this time.
A challenging job that stretches you mind without being too stressful sounds perfect. You haven't been left with chemo brain then? I'm an archivist and my stupid brain can no longer cope with the more complex research, which is the fun part. Hope it's temporary as I'm easily bored.
In the UK it's widely acknowledged that flat-packed furniture, sheds, greenhouses and so on are not for the faint hearted. I only ever managed a bookcase and a bed all by myself. Nevertheless we're thinking of a DIY Summerhouse for next Spring, this might be pushing our luck though. Best of luck with your shed.
Hope you continue to move forwards.
Gill x
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Hello Helen and Gill,
I have read your posts but have just not had any time to answer. All this week my time has been taken up with problems in our apartment complex and I am pretty fed up with it all. I shall probably wait until the weekend when I have more time to catch up (I hope!).
I cannot believe the chaos of this country and the awful behaviour in Parliament. It is an absolute disgrace and I think Boris Johnson should be sent to the Tower, along with Dominic Cummings. We must be the laughing stock of the world.
Love.
Sylvia xxxx
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Wouldn't it be nice if the Queen could shout, 'Off with his head!'.
Susie
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Hello Sylvia and Susie,
I watched the debate live. It was entertaining to say the least. I have to conclude that Johnson, despite his Eton and Oxford education is genuinely very stupid and completely out of his depth. An ill mannered oaf and nothing more than a very dangerous bully. Rees-Mogg made a complete fool of himself and should have been held in contempt of Parliament. The biggest surprise was Jeremy Corbyn who had all the facts and spoke with authority.
Johnson's behaviour at the dispatch box yesterday was just embarrassing to watch.
Gill x
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Boris Johnson's own brother, Jo, has quit the government and the party.
Somebody must have cursed us with living in interesting times.
Susie x
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Hello Helen,
Thank you for your happy birthday greetings.
I was so glad to read that your wound is now covered with fresh skin. You must be very relieved to know that your wound saga is now close to an end.
Your work in your public vocational education system sounds most interesting. What exactly do you do? If your work is challenging, in a way, that is good news, as it will keep you fully occupied.
I do understand about trying to erect a small garden shed. Those instructions always seem so complicated!
It is a very cool, windy day here and it was not at all pleasant in the town in Exmouth when we went to get a bit of shopping. We were glad to get back indoors.
Keep up the good work and enjoy getting back to your job.
Love.
Sylvia xxxx
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