Calling all triple negative breast cancer patients in the UK
Comments
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Hello Worriedasworriedcanbe,
First of all, since you are new to the forum and threads, it would be useful if you could address your posts to the person whose post you are answering. I am Sylvia and I am answering your first latest post, which is obviously answering mine. The other post is from Flora, who is posting on behalf of her mother.
You mentioned the drug Danazol which is prescribed for menstrual disorders.
You mentioned that your doctor is male. Is he your regular GP? If so, you might want to request seeing a female GP at your surgery.
Before being prescribed something for pain your doctor needs to find out and tell you what is causing the pain. That is common sense.
What do you think is wrong with you? If you think you might have inflammatory breast cancer, you should tell your doctor and see what the doctor thinks. If there is any doubt you should get referred to a breast cancer consultant and take it from there. You can say that you have had ultrasound etc. with no result and say that you would like your breast area examined under an MRI scan.
Have you still got a rash? Did it come on after you had used a cream from the dermatologist you saw? Could it be an allergic reaction to this? What did the GP say about the rash?
If you feel strongly that you want an MRI, just be assertive and say that you want a referral. We all hear stories about GPs not recognising cancer.
That is about all for now.
Best wishes.
Sylvia xxxx
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Hello Flora,
I was glad to read that you are feeling better. This bug has certainly had a strong effect on a lot of people. It has taken Raymond and me weeks to recover.
Your mother must be so glad to have finished chemotherapy. I do hope she will be alright with the bisphosphonates. I can understand your feeling nervous about the bisphosphonates. All I can say is that I would not take them. I think they are lethal and I certainly would not want to risk jaw necrosis. That is a very small percentage for a lot of hassle.
It will take your mother quite a while to recover and I think three months is a bit optimistic. A year is definitely more like it. She needs to get back to a normal life and put breast cancer in a dark corner somewhere.
She needs to emphasise a healthy diet, some nice leisurely walks, avoiding negative stress and enjoying each day to the full doing what makes her happy.
Take care.
Love.
Sylvia xxxx
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hi flora
i'm so glad your mother has finished chemo, and i do agree with Sylvia in that it will take a while to get over it. my oncologist told me it takes 6 weeks for the drugs to completely leave the body. She said after that any problems had were not chemo-related. i disagreed with that, since i believe chemo has also some long-range repercussions. More for some than others. i hope your mom will make a quick recovery. has she lost much weight?
As for the recurrence fears, I believe it is inevitable to have them, but as time passes they do become less.
I am very glad your flu bug has gone, and you can get back to your busy life. And it was very good of you to post from your sickbed, I hope your husband held up okay.
Talk to you later
Love, Mary
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Sorry, Sylvia, I've been in France for the past few days and haven't caught up with the forum in detail yet.
Still very worried about Gill, though.
Susie
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hi Sylvia
I can report on this week so far; Monday was my dentist visit. Although the cavity i had had not reached the nerve, by the time he finished drilling it out the nerve was exposed. so he filled it but told me if I started having pain I would need a root canal to save the tooth. i was a bit upset, I suppose because my teeth have not given me problems for many years. And I am a bit paranoid of root canal. happy to report so far no pain there!
First day with therapist for shoulder yesterday: a very nice young woman went over my chart then moved my arm several times in ways it hadnt been moved since surgery, and measured my results for baseline. When i was finished she advised me to go home and ice it. I had a driver and we made some stops since I had no pain. By the time we got to the last stop the pain had arrived and I went home and had a quite painful evening. The therapist was right, i should have listened, obeyed and had driver take me straight home!
All this work you do for directors' meetings is probably good for you really, and I am sure you take it seriously and make good decisions. flowers should be looking good soon, not here yet.
i will talk to you later, still one-handed it's tiring.
Love, Mary
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Hello Everyone
Checking in. Catching up on the pages I've missed. I've been dealing with groin/hip pain. Finally got a firm diagnosis of severe arthritis.
I'm scheduled for an xray guided injection in a couple of weeks. It will be a relief. Even if it only lasts a few weeks or months, it will be better than my situation now. My MO says it was made worse by rads. I knew that already, just didn't realize how bad it could get.
Hugs and thoughts to all going through treatment and just finishing up.
Love Val
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Hello Susie,
It was nice to hear from you and I was interested to know that you had been in France for a few days. I was wondering where you went. I hope you had a good time.
I am worried about Gill as well and I have been wondering what we can do to find out if she is alright.
I was wondering whether her husband, Michael, reads the thread. I am not sure how much he participates in what is going on in the thread. Raymond takes a great interest in the thread and has supported me with it since I started it. He is familiar with the names on this thread.
It is good news that Flora's mother is doing well.
Take your time catching up and I shall look forward to any comments that you have.
Take care.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your recent post. You are having a difficult week and I do hope things improve. I did not like the sound of your visit to the dentist. Like you, I have great reservations about root canal work. It gets a very bad write-up. I had it once when I was living in Canada.
It is good that you had a nice young woman to deal with your arm. I was sorry to read that you were in pain during the evening. I do hope everything is better today.
It is true that the work I do as a Director is good for me. I am the active Director of the two of us and liaise with our managing agent. I write the quarterly newsletter that is sent to the residents of our apartment complex, and do the agenda for our meetings and then write the minutes. I make sure all inspections and work are carried out in the communal areas and have got to know lots of different people. Raymond and I have taken it in turns to be Directors, having been voted by the residents for most of the time we have been here. It is a full time job. I do enjoy the gardens here and they are starting to come back to life.
I do agree with you about after-effects from chemotherapy can come and hit us at any time. Everyone needs to keep a lookout for lymphoedema and neuropathy.
That is about all for now. I have another email from Chris Woollams but have not looked at it yet. I have the April issue of What Doctors Don't Tell You and on the cover it says Say Goodbye to the Blues Forever. On the cover it also says PLUS The real healthy heart diet, Ditch opiods without drugs, 8 ways to fend off hay-fever, Heal your ulcerative colitis naturally, Simple exercises to counter sitting.
The Brexit talks get more and more insane!!
That is all for now.
Love.
Sylvia xxxx
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Hello Val,
Thank you for checking in. I am glad to know that you take the trouble to catch up on missing pages.
I was sorry to read that you have been diagnosed with severe arthritis. I do hope that the injection in a couple of weeks will bring some relief.
We do pay a price for our breast cancer treatment and it can be quite exhausting and challenging but we have to be thankful that we got through our treatment and can still enjoy life.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I spent a few days in Toulouse. I spent my year in France as part of my degree near there in the 70s and had been meaning to take a nostalgia trip for a while. It has changed quite a bit, as you can imagine. There's a Metro now, which makes it easier to get about. Much of the city centre is pedestrianised. If they can do it there, when the French love their cars, it's high time we did more of that over here. There were riot police on the streets when I arrived, to deter any gilets jaunes demos. Some of the banks had boarded up frontages where their windows had been smashed.
Whole world's gone mad.
Susie
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Hi Flora,
So glad to hear that your mother has finished chemo. Spring is here and I firmly believe that we build up our strength by getting out and doing stuff. Even if she feels exhausted at the moment, walking a little further every day can do her nothing but good.
Is she to have radiotherapy?
best wishes,
Susie x
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Hello Sylvia and everyone on the thread,
I'm afraid that C-diff is proving very difficult to recover from. Please don't think that everyone goes downhill as quickly as I did. It was the combination of C-diff and the drastic loss of white cells that caused all the drama. Apparently Filgrastin doesn't always work. Now they tell me. I'd also had sepsis after every cycle of chemotherapy, so my body was very weak. As Sylvia often reminds us, we need to listen to our bodies.
I can't remember what I said in my last post, but I know that in the past I've been very frustrated by the NHS and Norwich hospital especially. I have to admit now that I've seen what happens in an emergency, I'm completely humbled. All day and all night doctors, nurses and lab technicians were monitoring my bloods, and my vital signs. The labs were constantly sending in results so that drugs could be adjusted. More to the point, for me, I was told the truth that I was extremely sick. At one stage, my blood pressure dropped to it's lowest point and my kidneys were in danger of failing. The next morning Michael had to be told and that was the worst thing I've ever had to do. He phoned both children and they came down the same day and took it in turns to sit with me.
Later that night, the nurse came in with my latest blood results, white cells were going up, blood pressure going up to safer levels and my kidneys showed no sign of acute damage. They have been through a lot though, so I guess that I might have a few problems in store. Less than a week later I was home. Still have very unreliable bowels. So for now I'm incontinent. Hope wearing nappies is a temporary glitch as it's not very attractive.
For me, Paxlitaxel was just too tough. Lower doses over more treatments wouldn't have been effective for metaplastic as it's so aggressive in most cases. Would I have chemotherapy again? With hindsight I'd have to say that I wouldn't. However, if I've seen off cancer for good, then I could well change my mind.
I have to keep my PICC line in for the next few months in case I relapse. Apparently one in five have a recurrence of C-diff. Since I won't have sepsis at the same time, the impact won't be as bad.
This is all very grim and in writing it, I'm aware that some of you will be undergoing or about to undergo treatment. I do think that chemotherapy is generally worth doing. However, my body fought it right from the first treatment, that isn't common, but neither is it unheard of. I had every opportunity to put a stop to my treatment, but ignored all the warning signs.I guess I was too focused on the cancer to stop chemotherapy when it was obviously sensible to do so.
Triple negative breast cancer generally responds well to chemotherapy. Susie seemed to breeze through her treatments as do many others on the thread. Just know your body and listen to it.
In the meantime, I'm very glad that Sylvia and Raymond seem to have finally shaken off their virus and that Mary's recovering. Flora, my Oncology Registrar has told me that it will take at least a year to recover, so early days for your mum. Glad that the treatment is behind her. So many others I ought to include here. I need to read through the posts and do some catching up as so many have posted.
My hair is like thistle down and stands up all over my head a bit like a Dandelion clock. My eyebrows have completely disappeared, eyelashes too. No nail damage on fingers or toes. No peripheral neuropathy either - as yet. Wonder if the ice on my feet worked?
Love,
Gill X
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Hi Gill,
So glad to hear from you. I'm sorry that things have been tough but relieved that you are home. I sympathise with the hair. Mine looks likes clown hair.
Susie xxx
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Hi Susie,
Fortunately I like my wig, in fact I'm going to invest in a shorter version for Summer. Really wish my eyebrows would grow back though. I just can't get the hang of drawing them in and I'm developing eyebrow envy.
Gill X
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Hello Gill,
I was so pleased to see your post this morning and I am so glad that you have got through all this and are back home. It is unbelievable what you have been through, so take it very easy. What with C-diff, sepsis and the Filgrastin not working to keep up the white blood cells, it must have been a great challenge and I think you showed great willpower and determination.
I was glad to know that you got good care during all this emergency situation.
I think we all know that the taxanes, whether it is docetaxel or paclitaxel, can be a great challenge and have nasty side effects. All the chemotherapy drugs do a lot of harm and whether to have them or not takes a lot of hard thinking. I have read many times that the most important part of all the treatment is to have surgery to get rid of the tumour. We just cannot know how we are going to react to chemotherapy, radiotherapy or indeed the surgery.
I think Susie and I were lucky to get through our treatments without too many problems. Nevertheless, you have to bear in mind the long term side effects, such as problems with osteoporosis, lymphoedema, neuropathy and heart problems. That is why I am always saying get scans and examinations to check out anything you can before treatment so that you can compare the state of your body afterwards. You do need bone density scans (DEXA) and ECGs before and afterwards. Keep reading your body.
Take your time catching up with past posts. The most important thing for you is to take care of yourself and get yourself back to good health. You are right to emphasise tht it can take a lot of time to recover from chemotherapy and you need to be patient.
That is all for now.
Sending you love and best wishes.
Sylvia xxxx
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Hello Susie,
I was interested to know that you had spent a few days in Toulouse, and that you had been on a nostalgia trip. I lived in Toulouse for two years from 1972 to 1974. I am sure I would not recognise it now. I do remember it as a very busy place. It seems that other countries always get on with things more than we do. We do a lot of talking but do not take any action. I also spent a year in France as part of my degree course, but I was in Tulle in Correze. I enjoyed that year very much.
I am always interested in what goes on in France and regularly watch France24 on the television. I loved watching TV5 but the channel was removed. I have been watching the gilets jaunes. It reminds me of the 1968 protests in France, which a lived through there as a teacher.
I am so glad that we have heard from Gill and that she is back home.
Take care. Have a good weekend.
Love.
Sylvia xxxx
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Hello everyone,
It is Friday again and I am just posting to wish everyone a good weekend. It is beginning to feel like Spring here but the mornings are still quite cold.
It should have been Brexit day today but it has not happened. As usual it has been nearly three years of muddle. I have watched quite a lot about parliamentary proceedings and am not at all impressed with any of it. We need to modernise.
Many thanks to those who have posted this week.
Love.
Sylvia xxxx
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Hello Sylvia,
I used to watch the news on TV5 regularly till, as you say, it disappeared from my cable. Masses of travaux going on in Toulouse and I suspect that they are all over-running, just like ours. I found the local accent much toned down since the 70s, which is an interesting phenomenon -- what's been called the EastEnders effect here in the UK, where everyone starts talking like people they hear on TV.
Interesting bit of TV one night during my stay. Big rows going on because the governments would like civil servants to kindly work their 35-hour weeks and not constantly be getting extra time off for, of all things, car boot sales and the like. The unions are up in arms at this attack on their Droit de Paresse!
Susie x
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hi gill happy to. Hear you are in a better place. A friend of mine had kidney failure then developed C diff and has now had part of her bowel removed - she like you had been very ill. I had never heard of it.
I wish you a speedy recovery and no relapse.
Helen xx
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Hi Gill
I am so glad to hear you are improving, you have been through the mill. I also think that you are a very tough lady and are here to stay!
are you able to eat much of anything? It's probably a good idea to try and get in probiotic foods, but I won't nag, just happy to see that you feel up to posting.
Happy Spring!
Love Mary
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Hello Sylvia,
I too have concluded that surgery may well be the best treatment for cancer. It's problematic though as operating times for cancer surgery are often far too long. The NNUH also has a reputation for cancelling surgery at more than the national average rate. There's also the issue of mastectomy versus lumpectomy. I chose mastectomy because I had fairly small breasts and I wanted the cancer free margin to be safe. I was told that if the lumpectomy didn't leave clear margins, another surgery would be required and that would mean another long wait. I paid and was operated on a week later.
I thought that I had understood the likely side effects of chemotherapy and planned for these. No one ever mentioned that the sepsis I suffered from after each round - and the subsequent treatment with a universal antibiotic - could well result in a catastrophic C-diff infection. I hope that by raising the issue here other women will be forewarned.
I would never advise against chemotherapy, but would advise patients to listen to their body. We usually know when something isn't right, I did, but ploughed on regardless and that's something I'll always regret.
Love,
Gill X
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Hi helenlouise,
Thank you for your good wishes.
I was warned that part of my bowel would have to be removed if the C-diff had resulted in a blockage. Apparently the bowel is extremely delicate and can die off very quickly if blocked. I really feel for your friend, it must have come as such a shock as it's life changing. Fortunately my kidneys seem to have survived. I was given some very rapid super fast rehydration at some points when my blood pressure fell through the floor.
As yet I can't be more than a couple of minutes from the bathroom and have to wear these very noticeable pads as diarrhea is not yet a thing of the past - though tight jeans are!
Reading your cancer and treatment history, you seem to have had a very tough time yourself and have had to endure more than your fair share of surgery and chemotherapy over the years. Hoping that you have much better health in the future.
Love,
Gill X
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Hi Mary,
I do manage to eat, though it passes through at speed. I'm having probiotic yogurt in order to restore the good bacteria. Wish there was a pill for just this purpose.
Spring has definitely arrived in Norfolk.The little and not so little Easter bunnies are out in force and the male pheasants are puffing themselves up to twice their normal size hoping to see off rivals and attract a female. The two cats are keeping a watchful eye on all this activity. Unhappily, Ida, the smallest of the cats has begun the hunting season early and sad little mouse corpses and piles of feathers are being left at the door as gifts.
Thanks for the prayers and candles.
Love,
Gill X
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Gill,
My thoughts and prayers are with you. I'm so sorry that you've been through so much and hope that you will have a full recovery sooner than later!
My best wishes and prayers to helenlouise, Kathseward, Mary and others who are going through tough times. I don't fully understand all you're going through because, though I have some side effects from medicines, I'm doing quite well and getting out and about a little more than I used to.
Sylvia, thanks again for the list of bioactive compounds and associated foods. I printed the list out and will go over it with my daughter who is into all sorts of health foods. We are thinking of moving within the next couple of months and have started preparations. So we'll be very busy the next few months and I will check in here on a limited basis.
My sister starts her third round of chemo April 3rd (4th and last one April 26th). Thus far, she seems to be doing well and after a few days doesn't have major side effects from the treatment.
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Hello Viewfinder,
Thank you for your thoughts and prayers. There does seem to be a few of us on the thread who are going through difficult times at the moment. Like you, I'm sending them my best wishes and prayers.
Your sister seems to be sailing through her chemotherapy, thank heavens. April 26th will soon come around and she can have a well earned rest - though from what you said earlier, resting has never been high on your sister's agenda. Maybe getting back to her work is the best therapy.
Good luck with the preparations for moving house. Hope you find the perfect new home if you do decide to go ahead.
Love,
Gill X
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Hello Worriedasworriedcanbe,
I was wondering how you are getting on. Did you have any success with a GP referring you for an MRI scan? It is not good for you to be so stressed and worried all the time and you do need a diagnosis and some peace of mind.
I am thinking of you and please let me know how things are.
Love.
Sylvia xxxx
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Your words are appreciated. I have tears in my eyes for the companionship and support you have given to me. Life throws curve balls at us and our friends. Being able to share is so comforting.
To those who respond directly and all of you on this thread but especially, our steadfast,Sylvia, thank you. Xxx
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Hi Gill,
You sound as if you're in better spirits. I do hope that's the case.
Lovely sunny spring day here in London.
Love, Susie xx
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Hello Mary
Sending healing thoughts your way. Sylvia so glad you are still active with us. You are an inspiration.
Val
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Hi Susie,
Early Spring and September are my favourite times. Yes, definitely feeling more hopeful, I've been told to be patient which would be so much easier during a wet Winter.
Do eyebrows ever grow back I wonder?
Enjoy a sunny London.
Love,
Gill X
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