Calling all triple negative breast cancer patients in the UK
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Hi Susie,
The Norfolk and Norfolk Breast Clinic seems to be run by surgeons too and they seem to have a very big say in their patient's treatment. I had a massive fight to get anything at all done once my surgery was over. Depends on the surgeon, but I'd prefer oncologists to have an equal say.
Nothing's happened to my big toes yet. No roughness and no neuropathy, though I might be tempting fate here. Wonder if sitting with my feet in a bowl of frozen peas during chemotherapy helped?
Gill X
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Hello, Gill,
My neuropathy started immediateloy after my last cycle of taxanes so if you haven't got any you may have got away with it. I wonder if the frozen peas helped. You can eat them now that you've finished.
Susie xx
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hi Sylvia and co,
Met with oncologist today who confirm stage IV with the skin mets although my scans are clear for all other organs. This is in conflict with what the surgeon said: stage III only local reocuurance. But I felt if it's in the lymphatic system and metastized to skin it is more than a local issue. No mets elsewhere, at this stage, is a silver lining.
My MO arranged a surgical biopsy for tomorrow to confirm the receptors. If positive, which one test showed, but not enough sample to confirm. Hence the procedure tomorrow. If positive we will hit it with more IV chemo and possibly herceptin. If negative we will look for trial of immunotherapy. Either way he indicated this is now a battle. Being Easter it will most likely be 10 days or more before we know.
I am not surprised but a bit numb. At least they are not mucking around. Once we know the treatment pathway I can make plans and settle into what the next part of the journey will be.
I hope this message finds you well.
Thanks once again for your care and concen. Xx
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Hello Gill,
I do hope the probiotic supplements will help. I do hope you do not develop colitis.
I do not know too much about immunotherapy and think perhaps that the name makes it seem more wonderful than it is. I saw two of my friends here get progressively worse on immunotherapy drugs. One of them had triple positive breast cancer and after standard treatment of surgery, chemotherapy, radiotherapy and then onto injections of Herceptin, for HER2+, seemed to be fine. Within about a year the cancer had returned and spread. She seemed to have all kinds of immunotherapy and monoclonal antibody drugs, some orally and some administered in the same way as chemotherapy. The cancer spread to all different parts and she died.
The other friend here had malignant melanoma that spread to the liver and she had immunotherapy drugs administered like chemotherapy. They had a terrible effect on her and she went from being active and a walker to barely able to move around her apartment. She was told they had not worked and she was really just abandoned. She died quite quickly and in her last weeks was not even able to drink a cup of tea.
Here, within my complex, I saw two tall slim women active and able just die.
What is the repurposed drug that you mentioned?
I suppose hospitals may differ in their aftercare with breast cancer. After standard treatment I alternated for five years between my oncologist and my breast cancer consultant surgeon. I started with every three months and then went to every six months and then to once a year. I was discharged from the breast cancer consultant after five years but stayed with the oncologist for another five years and saw her once a year. they were all just physical check ups and I had an occasional mammogram.
If that were me I would not think about any reconstruction for a while. It is a lengthy surgery and I would be worried about spreading cancer cells.
That is about all for now.
Love.
Sylvia xxxx
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From what I have read immunotherapy is not an easy option. It has unpleasant side effects, the same as chemotherapy does. At present they seem to be using it when they ave exhausted other options.
Susie
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Dear all,
I wanted to pop in just to say the following:
Gill- I was so pleased to hear you’re alive and well( relatively- I do understand that you have frustrating bowel issues, which may persist). I was worried once you disappeared from the board that you had succumbed to the C-Difficile.
What a horrible time you’ve had. I suppose that things can only get better from this point - really hope so anyway.
Although my mum never caught a Superbug like you, she was hospitalised for neutropenic sepsis several times, and I remember trying not to think too much about what this might lead to. Chemo has left her with atrial fibrillation( at least for now - we need to fix out if permanent) so she too is feeling she’s not quite the person she once was, and not just because of the cancer diagnosis.
Mary-good luck with the recuperation and don’t overdo things.
Helen Louise-I’m so sorry that you’ve been diagnosed with skin mets. As ever in such situations, “sorry” doesn’t seem an adequate word really.
You must be feeling very numb and still slightly in shock about it all. What a battle you seem to have had.
Please hold onto the silver lining that it is , (for the moment and will hopefully stay that way) not in any other organs. That is certainly a “better than not” as my mother would say.
And it sounds as though the oncologists are swinging into action straightaway- reassuring to know that everything that can be done is being done.
Take care, and hope you can find nice things to distract you a bit from everything while on your break from work.
My mother is now about a month away from chemo, feeling a bit more energetic but also still experiencing all the taste/mouth issues and slight queasiness. She knows not to expect these to go away quickly, and is trying to cultivate patience.
She has put on a bit of weight during the taxane chemo, which she feels annoyed about, but I think it’s quite a good thing! She lost half a stone on the AC, and didn’t have that much to lose, having always been slim.
Anyway my best wishes to you all. I will continue to pop in from time to time to see how everyone’s doing.
I am now feeling quite a bit better from my flu/chest infection episode( someone kindly asked-thank you) though not quite 100 per cent. Sounds as though that’s the same for you too, Sylvia. Hope the styeclears up- I used to get those a lot when younger.
Happy Easter
Flora x
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Hello Flora,
Good to hear from you. I found that it took some weeks for the bad taste to finally fade after my last cycle of taxane. I mean, the really vile taste went after a couple of weeks but nothing tasted quite right for a while, maybe a couple of months.
Is your mother to have radiotherapy now?
Happy Easter.
Susie x
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Hello helenlouise,
Thank you for your post. It seems to me that the skin mets should be in the hands of your oncologist and it is the oncologist who confirms the stage. My information is that any cancer that has travelled from the original site is classed as having metastasised and that is stage IV. It all seems a bit confusing. My oncologist told me that a rash on the mastectomy scar line is a sign of recurrence and that does not seem the same as mets, but something that is localised. Who has used the term skin mets? You need to get that sorted out.
It is good that all your scans are clear for any sign of metastases in other organs.
We are not doctors here, and reading what you say I personally feel a bit confused. You mention Herceptin which is used for HER2+, so does this mean that skin problem is HER2+? What immunotherapy is being suggested in a trial?
I do hope you can get this sorted out and that you can have a clear picture of what it is you have and how it is going to be treated and why.
I can understand how numb you must be feeling. I do hope you will be able to get this treated promptly and ten days seems a long time to wait.
We are all thinking of you here and hoping all will be well. I cannot believe all that you have been through since 2013.
Love.
Sylvia xxxx
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Hello Mary,
I have missed you on the thread this week and I am hoping that all is well and that you are not having problems, but just taking a rest.
Hello everyone,
I just wanted to wish you all a good Easter break.
Hello adagio, 53Nancy, CocoonCat, Marias and Hanieh. I think you have moved on and are not regular posters any more, so just want to wish you all the best.
To Kath and Val, thank you for popping in when you can.
Best wishes to everyone.
Sylvia xxxx
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Hi Susie
Yes, I watch Game of thrones, and Sunday night's episode did not disappoint. As usual, there were surprises and reunions. I haven't quite figured out hoW Cersei thinks she will ally with White Walkers if the North doesnt defeat them, or what will be left to be Queen over. Also cant wait to see how Daenyris will react to news of Jon's royal heritage.
Did you read the books? I have, and am a bit miffed that Mr. Martin never put out his last book. The producers have done a very good job being faithful to the books, in a condensed way. if he publishes this last book, which is the story being told now, i would definitely buy it.
Hey Gill
So glad you are feeling so much better, are you eating rather bland food? I find homemade chicken soup one of the safest things to eat if my innards feel off. Also yogurt, bananas and dry toast. i think probiotics will help with your situation too. I can see that sauerkraut would not sound attractive right now.
I see my surgeon today for 6-week post-op visit. i think i will be told to wean off the sling, and will be able to use arm more, i have a feeling things will start to get more painful, thank God for ice bags!
Dreadful about Notre Dame, all the events it has survived until now, I hope we hear how this happened.
Hi Sylvia
as I mentioned above, i see doc today. I'm afraid i overdid things yesterday moving items for donation out to car and other things. i did not use operative arm but feel as if I did. I am trying to go thru Chris W.s latest post, and I received 2 issues of WDDTY in 2 days; one issue was very late, and one was early. So much to go over in that mag.
I have to cut this short, must get ready to go. I will post more later.
Love to all, Mary
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hi Helen Louise
I am so sorry to read your news, i agree with sylvia in thinking recurrence in scar should be considered local recurrence. I am so glad you do not have distant recurrences, and also glad it is being promptly looked after.
Now you will be back to going through the process, you can do this and get it behind you.
We are all here for you!
Love Mary
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Kew Gardens was busy this afternoon - not surprising on a beautiful, warm, sunny afternoon in the school holidays.
The Chihuly glass sculptures are a delight, rising among the flowers.
Did you know that tulips came to Europe from Turkey in the 16th century? Me neither.
Apparently one display had to be roped off after a woman tried to put her baby in one of the glass bowls to photograph it. I despair sometimes.
Happy Easter, everyone. Treat yourself to chocolate eggs.
Susie xx
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Hi everyone,
Sorry I haven't posted in a while but as I wrote previously, I'll be very busy for some time so will post only occasionally. I just wanted to stop by and wish everyone a blessed Easter and, for those still going through so much, I wish you peace and healing.
PS SusieW5, I really enjoyed your photos of the Chihuly glass sculptures. I thought you might find this picture of the Chihuly Museum interesting. I took it when I visited Seattle in 2014. My sister and I were very busy so we never went into the museum. There was so much other stuff to see and do.
Here's one of his creations at the Atlanta Botanical Gardens (Georgia, USA).
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Sylvia, Maryna and everyone else,
I have not left the thread, but my life is incredibly busy with one thing and another. I am due for a mammogram any day now, a bone density scan and annual blood work - the mammogram I never look forward to, but it has been 2 years since my last one! Somehow the thought of a mammogram creates anxiety in me. The bone density is for my own curiosity - since I do not take any drugs for my osteoporosis , I simply want to see if it is is stable or getting any worse? On April 23rd it will be 6 years since I completed my treatments - I am filled with gratitude for this. My general health is good and I am keeping up with the rainbow diet and many supplements. I have abstained from wine during the season of lent and I have not really missed it at all.
My husband is slowly improving from his spinal cord injury - the specialist does not think surgery is necessary at this time so we are very happy about that - he said that it can take up to 9 months for the spinal cord to recover from a big jolt. His left arm and hand are still not fully functioning, but he has started physiotherapy which he finds beneficial.
Maryna - so glad to hear that you are managing with your shoulder in spite of the sling - it is a long recovery process, isn't it? Praying that the pain will decrease and that the mobility will return in due course. It sounds like you are not letting it hold you back too much. Will you be singing in the church choir during Holy Week?
Wishing everyone a Happy Easter weekend.
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Thanks Viewfinder,
I didn't know that there was a Chihuly museum. I fear that I shall never make it to Seattle but, if I do, it'll be on my lsit.
Susie
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hi flora
Thanks for well wishes. Big day today, doc said to cast off sling and let arm out in the breeze! It feels quite strange, and doesnt bend very well. I thought I might be able to style my hair but it does not go high enough to do that, not yet. I have a feeling therapy will now begin to get more painful.
i completely understand how your mother feels; it is disappointing to go thru what we do and then feel like a stranger in one's own body, at least that's how i felt. I hope the A-fib won't bother her too much, I do know 2 women here who had the same side effect. I'm glad she is gaining some of the weight back, despite the bad tastes in mouth.
i'm also glad you feel recovered, that flu can really hang on, such a feeling of lethargy it leaves behind.
Spring is here, hopefully will be a tonic for us all!
Love, Mary
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Susie
You asked about Game of Thrones and I responded, do you enjoy watching it?
Mary
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Hi Mary,
Yes, loved it and hate the idea that it's about to end. I have read the books too, though I found those a bit plodding.
Susie xx
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Susie
I think the books are tough because there are so many more people in the books, and the story lines go on much longer, I would get the people mixed up. I did read them all a second time, that helped. i skipped the parts Ramsay Bolton was in the second time, couldn't stand any more of him. Whoever did casting did an awesome job, I thought the the actors and the characters they play all really fit well.
I hate that it's ending too! Mary
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Hello Mary,
I am responding to the post where you said you had been moving lots of things about to the car for donation. You also said that you were trying to catch up with Chris Woollams and two issues of WDDTY. Just take your time. It seems that we may all be doing too much. I seem to be living with never-ending lists of things to do, shared out with the director's work, the thread and personal things. I always seem to leave my own personal time to the last.
Love.
Sylvia xxxx
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Hello Susie,
I just wanted to say thank you so much for the lovely photographs of the Chihuly glass sculptures. I really enjoyed looking at them.
Happy Easter.
Love.
Sylvia xxxx
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Hello viewfinder,
Thank you for your post and for the lovely photographs.
How is your sister doing?
Happy Easter.
Love.
Sylvia xxxx
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Hello Flora,
Thank you for popping in. I was glad to read that you and your mum are doing better.
As far as your mum is concerned, it takes a long time to recover from treatment. The chemotherapy drugs put our bodies through a lot of trauma and recovery is slow. As for you, I am glad you feel better. It seems that this year this awful bug has taken a big toll on many people and the bug is still around and people are feeling awful. It took Raymond and me four weeks to shake off the bug and another four weeks to recover. During recovery I suddenly had a problem with my right eye and was told it was a stye. Six weeks since then (March 11th) I still have strange red mark on my lower outer lid on the right eye that just will not disappear. I am going to see the optometrist on Wednesday about it. I have tried antibacterial drops and antibacterial ointment, which helped but not completely. In addition my GP says I have developed blepharitis, a redness on the eyelids and rims of the eye. I have to clean them with warm water.
I have heard from a lot of people that they have AF, not as a result of chemotherapy, but I do know that doxorubicin, epirubicin and the taxanes all cause heart problems. AF is an irregular heart beat and orthodox doctors like to put you on anticoagulants, and/or beta blockers. I do not know whether it can be cured.
That is all for now. Happy Easter to you and your mother.
Love.
Sylvia xxxx
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Hi all and thank you sincerely for your encouragement and support. I am yet to have all the answers. Yes confusing info on stage. No distant metastizes that the important point right now.
I had bleeding and serum oozing from the surgical biopsy on Wednesday but they were right on to it and now have a negative pressure bandage that removes (sucks) the fluid. All new here and the surgeon said since they have used (October 2018) not a single seroma after mastectomy - which is great news! The product is called Prevena! Just proves how quickly things are moving. And we in Australia maybe behind other parts of the world. I had seroma from my mastectomy in July that required draining four times. Nasty business. This time my risk is another seroma or ulceration. So I am wearing this bandage that will prevent that and help the wound heal.
Another round of waiting. But since my oncologist has confirmed we are in for a battle I feel somewhat relieved. Now it's a matter of knowing if my bc has changed to positive or remains negative. Once we know that he can advise treatment pathway..
On a different note we have had a wonderful Good Friday with a gathering of family and friends which makes me appreciate just how lucky I am.
Wishing you all a happy holiday and good fortune xxx0 -
Hello adagio,
I was so glad to see you on the thread and to get up to date with your news.
I understand how busy you are and I am glad that you have found the time to pop in.
I understand your anxiety about mammograms. I have not had many but hated them. When I was discharged from my check ups in 2015 after ten years I decided I was not going to have any more mammograms. I probably have had only three mammograms in all. One was on diagnosis, and just two during all my check ups.
I shall be very interested to know the result of your DEXA, bone density scan. As you know, I have osteoporosis as a result of a combination, I think, of chemotherapy and an overactive parathyroid gland (cured 2009 after surgery). I think I have had only two bone density scans in all. One was after finishing the cancer treatment and the other a couple of years later. On the NHS I was told I no longer qualified for any more because of age. I try to get my calcium from my diet bit do take 4,000 IU of vitamin D capsules and every now and again a Solgar Bone Support supplement, along with some magnesium.
I do hope all your blood work is normal.
I shall think of you on April 23rd as you reach six years since you completed your treatments.
I shall reach 13 years and 10 months since diagnosis tomorrow April 20th, so I am just two months away from 14 years.
I was glad to know that your husband is slowly improving from his spinal cord injury and that he will not need surgery. I do hope that he will make good progress with the physiotherapy on his left arm and hand.
That is all for now. Have a happy Easter weekend.
Love.
Sylvia xxxx
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Sylvia, thanks for asking about my sister. To be honest, she is not doing well right now.
She texted the other day and said she has a rash and "they don't know what it is." She brought home five prescriptions from the pharmacy. I asked for more details (eg types of medicines) but she's so tired she didn't respond to my text. We usually speak on the phone every day but she hasn't even felt up to talking. Whatever energy she has is used to do a little work each day for her job.
She's been sick on and off for months, ever since she had breast surgery (two in the same breast thus far). It seems to have gotten worse since she started chemo...in the beginning she was doing so well, just fatigue for a few days after treatment. It bothers me that the doctors don't know what it is.
I hope she's up to speaking later today.
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Hello helenlouise,
It was nice to see you on the thread. I was very interested in that product called Prevenal. That is good progress because I think that a lot of women going through breast cancer treatment do get seromas.
I do hope that you do not get a seroma or ulceration now that you have this pressure bandage, that sucks fluid away.
I do hope you get to know soon whether you are negative or positive so that you can start treatment.
I was glad to know you had a wonderful Good Friday. I do miss those family gatherings. They seemed for me to come to an end when my parents died and I do not see much of my two younger brothers.
Enjoy the Easter weekend.
Love.
Sylvia xxxx
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Hello everyone,
It was nice to see our group coming together again.
Many thanks Mary, viewfinder, Susie, Flora, adagio, and helenlouise.
To Kath, I hope we hear from you soon and have a good Easter.
Val, 53Nancy, and Jags 56, best wishes to all three of you.
Cocooncat in Australia, Marias in Colombia, Hanieh in Iran, good health and happiness wherever you are and whatever you are doing.
I do not think I have forgotten anyone, but if I have, please let me know.
Sylvia xxxx
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Hello viewfinder,
I was sorry to read that your sister is not doing well and I do hope she will improve. She does need to get plenty of rest, even if she feels she does not need it. Her body has been through trauma and the chemotherapy drugs build up more fatigue etc. as you go through treatment. Has she finished chemotherapy? Is she going to have radiotherapy?
I do hope her doctors will find out what the rash is. I would think it might be some kind of allergic reaction to the drugs, but I am not a doctor. Surely her doctors can sort that out? It seems to me that five prescriptions from the pharmacy is a lot. Are they all connected to the rash?
Let us know if you get any more information.
Thinking of you.
Love.
Sylvia xxxx
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Hello Gill,
I do hope you are feeling better.
Happy Easter to you and your husband.
Love.
Sylvia xxxx
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