Calling all triple negative breast cancer patients in the UK
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Hi all
Just wanted to quickly share some research from a journal article that has been passed my way. I've currently got the little one asleep on me and am on the mobile, so will keep this short and will post properly after Christmas once I've digested the article (and lots of turkey!). Its appears that there is a significant survival benefit to TNBC patients taking aspirin or anti-platelets drugs post therapy. The numbers were quite small, but the effect was very clear. Long term aspirin use does have associated problems, but is obviously a widely used drug and indeed we tell many patients with heart disease to take aspirin on a regular basis.
Anyway, I will have a good read through and post something more detailed info in a few days.
Lots of love to you all and a very merry Christmas.
Tom
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Sylvia,
Nice Christmas greetings and message. Thank you for all of your sound advice and show of concern. I am not eating that ginger candy, instead i am drinking ginger tea.
Mary, thanks for telling me about the gel slippers. I will try to look for them online. If i cant find them, i'll stick to the basins filled with ice water. It's gonna be real cold, it already gives me the shivers just thinking about it but if that's what it takes to avoid neuropathy, then so be it.
Breastcancerhusband,
Thanks for the info about aspirin being effective against cancer. I hope this becomes a real breakthrough discovery and it would benefit many.
Regards,
Gina
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Hi Gina,
I have been icing with Taxol.The nurse fills these plastic bags with ice and they have a pocket that I put my hands
And feet in.I wear gloves with finger tips cut off and socks
With ends cut-so my toes are exposed.I start 15 minutes before the Taxol starts.I have had 3 infusions-one per week-I did miss a week when I was in the hospital.
Rhonda
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Thanks Rhonda. I am glad there's so many ways i can do the icing. Mary told me about the gel slippers and Amanda used the cold mitts. I hope one of these is available at the hospital where i am getting the taxotere. I will try to ask them in advance and get approval from my MO too. Thank you very much
Hugs.
Gina
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HI, Sylvia,
Merry Christmas to you and Raymond, what a pretty card you posted. I hope you have a peaceful holiday and a wonderful New Year! Thanks for your friendship, advice, and wisdom, talk to you again soon!
Love, Mary
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To all:
Wishing everyone here a very merry Christmas and all good things in the New Year. For those going through treatment, special thoughts and prayers. I wish for all of us that we have good health in store for us and many happy days!
Thanks for sharing your journeys and for friendship from around the world!
Love, Mary
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Hello Tom,
It was so nice to have you back on the thread and thank you for sharing that research from a journal article that has been passed your way. I have an image of you with the baby and you typing on your mobile phone. That seems quite a feat. Thank you very much. I shall look forward to more details after the Christmas period.
I remember that in the past there has been a lot of mention of the benefits long term with breast cancer of taking a low dose aspirin daily of 75 mg. Because of the side effects of aspirin I have never tried this.
I do hope you have a lovely Christmas with your wife and children and wish you all a happy, healthy New Year.
Fond thoughts.
Sylvia
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Hello Gina,
Thank you for your latest post. I do hope the ginger tea will help with the nausea.
I do hope you will be able to sort out something with the ice before you start your treatment with Taxotere. I have been told that the cold from it all is no picnic, but if it prevents certain side effects it is probably worth it. Back in 2005/6 my oncologist was against ice caps and told me she was against them because of the fear of infection. Things have probably moved on since then, but with chemotherapy we all know we have to be vigilant and try to avoid infections.
I hope you have a nice day today. Raymond and I shall be spending the day quietly. The weather is very calm and mild for December. On the seafront there is the usual Christmas Day swim in the sea for anyone who wishes to participate. An acquaintance of ours will no doubt do the swim. For the past year he has been swimming twice a day in the sea in Exmouth. He does it to strengthen his immune system to try to keep his leukaemia at bay. His is six years out from diagnosis.
Best wishes, Merry Christmas and a Happy New year.
Sylvia xxxx
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Hello Mary,
Thank you for your festive greetings. Raymond and I hope you have a lovely Christmas and that the New Year will be a good one for you.
I am pleased to have you as a friend. I think we have connected so well for a long time now and I cannot thank you enough for your great contribution to this thread.
Raymond and I are having a quiet day. On Friday I had to go to the dentist's to have a wisdom tooth removed so I am busy doing five salt rinses a day for five days. I have strong teeth but I have (apparently) a genetic form of periodontal disease. It seems that my brothers and I have a kind of allergic reaction to the natural bacteria in the mouth that causes inflammation and the inflammation in the gums causes loosening of the teeth. I had quite a conversation with my dentist about inflammation and the trouble it causes. It is not very encouraging.
I can imagine you having a very busy time today.
Love.
Sylvia xxxx
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Hello everyone, posters and viewers,
I just wanted to wish you all a very happy Christmas and a very healthy, happy New Year. I know that it will be difficult for those of you going through treatment, but try to enjoy your day and tell yourself that next year all will be different.
Gina, Pam, ChrisAsh, Rhonda, Kath and Lamis for your mother, I want you to know you are in my thoughts.
Special greetings to Val and 4everStrong. With your treatment behind you I hope you will have a very good Christmas.
To adagio, I am hoping you are back home in Canada now.
To my fellow Brits, Amanda, Barbed, Maggie, Michael, PeterandLiz and Tom, I am wishing you all the best for Christmas and the New Year.
Very best wishes.
Sylvia xxxx
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Hello Hanieh,
I am just popping in to say that I hope all is well with you.
I suppose you are now back at work. How is it going?
I do hope that you are feeling good and that you are going forward with your life.
This is a bit of a mad time here in the UK with Christmas and the New Year.
Please keep in touch.
Fond thoughts,
Sylvia. xxx
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Hi Sylvia,
Just dropped by to tell you the ginger tea worked for the nausea. I feel fine now, my appetite is back too. I also completed all of my postchemo meds including my Filgrastim yesterday. I just have this itchy throat this time and a little cough. I don't know how i got it, must be the weather. It is always the flu season here during December but I really have not been going out much so i am wondering where i got my cough. Anyway, today i will start on my usual one-week ciprobay antibiotic after each chemo cycle and this should take care of my cough.
I also tried looking for a gel slipper and cold packs in a nearby mall but there's none. I will try looking at medical supply shops, if there's none or if it is too expensive, i will just have to improvise like maybe bring a small basin filled with icewater and cold ice packs ( the ones i use for head fever) for my hands. i am sure the hospital have large gel packs to wrap on my feet but they charge too much for its rental use, it is like buying them already. I have a small coleman ice box where i can place the ice for 6 hours without melting.
Ok, that's all for my update.
Talk to you again,
Gina
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PS,
I forgot to thank you, Mary and everyone for being so nice to me. Thank you Everybody! Here is a Christmas hug from me to all of you...
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Hope everyone had a nice Christmas!
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Omigosh Rhonda. Who is that cute baby you're holding? She's so adorable.
I think she's a carbon copy of her mother. From forehead, to eyes, to cheekbone, to nose, to lips. and to that beautiful smile.
Love that picture!
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Hi Gina,
She is my grand daughter Adaline-3 months old! This is my daughter Rachel,her mommy
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My bad Rhonda Lol! But was it you on the first pic? You dont look like a grandmom, really and there's a resemblance between you and your cute granddaughter.
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Hi Gina,
She is my grand daughter Adaline-3 months old! This is my daughter Rachel,her mommy!
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Thank you Gina!I just turned 58 on Christmas!Must be my fancy new wig-lo
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Hey, Rhonda,
What a cutie, or several cuties! I could have believed you were the mother, you look very young and happy. Thanks so much for posting your family pics! And Happy Birthday to you, my grandson also has a Christmas Day birthday.
Talk soon, Mary
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Hi, Sylvia,
Well, Christmas has come and gone, it was a flurry of family, and wrapping paper, and a lot of food! Also a Church service, and a good time had by all. I'm afraid I missed most of the Church service, we in the choir had to sing so many songs that we were in a flurry of keeping up with all our papers and songbooks and I missed most of the spoken words. I lost most of my voice about halfway-through, fortunately I am an alto and was able to avoid any high notes.
Sorry to hear about your dental problems, I hope you can get that sorted out. I am surprised you still had your wisdom teeth, most people here seem to have to have theirs removed at a young age. Has it been causing you much pain? Do you have bleeding gums? I also have to see a periodontist occasionally, he keeps track of my gum disease, it seems to be in check at the moment. I had not heard of "an allergic reaction to the bacteria in the mouth." How is that treated?
Someone told me that they were in a store right before Christmas and right past the Christmas decor aisle was an aisle full of Valentine candy, the next big thing, I guess, after the ball drops on New Year's Eve!!
Talk to you soon, Sylvia!
Mary
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Hello Rhonda,
Thank you for posting your photographs. You look like a happy family. I do hope you will have a good 2017. I know you are supposed to finish Taxol mid February 2017. That date is not that far away.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I was pleased to know that all went well for your Christmas period. Here in the UK I feel the whole Christmas period goes on for too long. After Christmas Day there is Boxing Day, which is another public holiday. Because Christmas Day was on a Sunday, today, Tuesday 27th, is a public holiday. This will be a short week and then because New Year's Day is on a Sunday, the Monday will be a public holiday. It always takes a long time to get back to normal.
I am fine now after having a wisdom tooth removed. I was surprised to learn that in the US most people seem to have them removed at a young age. It had not caused me any problems until now and as the dentist told me, the problems are not with my teeth, but with the gums, which become inflamed because of the bacteria to which I have a kind of allergic reaction. We know that inflammation anywhere in the body causes chronic illnesses. It is probably at the root of cancer. In fact I often wonder whether the gum problem may have played a role in my own cancer. The two bacteria that are natural to the mouth are porphyromonas gingivalis and aggregatibacter actinomycetemcomitans. These bugs spark the production of proteins suspected of activating problems in the immune system. Antibodies produced to combat these proteins create inflammation and attack patients' over tissue.
I do not completely understand why natural bacteria in the mouth cause problems for some but not others.
I do know that lots of people here have periodontal problems. I have always looked after my teeth but we know this does not always avoid problems.
I read in a magazine the other day about a woman who has been through breast cancer and a bilateral mastectomy. She had always eaten healthily etc. Her husband had eaten a lot of junk but is fine! As we know, nothing is fair in life. My brothers have the same problems with their gums and the dentist is calling it genetic.
There is not really any treatment for periodontal disease except strict mouth hygiene. Antibiotics do not really help and you would have to take them permanently.
I am not surprised that the stores are already stocking up for Valentine's day. It is awful, really. Sugar is a horrible poison to the body and it is everywhere. I think that people are getting less and less healthy, even though they may be living longer.
I am in a bit of a shock at the moment as I learned yesterday that the neighbour in the apartment below us, dropped dead of a heart attack on Christmas Day while on holiday and out walking. He was a great rambler and I cannot believe he has died just like that. He was just 72 and full of life.
Someone said to me today that you are a failure these days if you do not reach 90.
There is a crisis in our NHS with too many patients, too few staff, and underfunding and a lot of waste.
I do enjoy taking to you Mary.
I do hope you will have a good 2017.
love.
Sylvia xxxx
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Hi everyone the Garvan institute in Australia which is expected to have long term great results for tn bc and breast cancer in general. This is the link. They are pushing for trials to start earlier than 5years because the results have been amazing.Here us the link if u want to read it. They are bowled over by results . https://www.garvan.org.au/news-events/news/two-is-....
Cheers Kath.
Ps taxol 10 on Friday. Christmas is Broken Hill was hectic with grandchildren. They spent the day in our pool! Temps hit 40 degrees Celsius so very hot
E
S
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Hello Kath,
Thank you for your post and thank you for posting the information about the Garvan Institute in Australia. I do hope people will take the trouble to have a look at the information. I have had a quick look tonight, but I shall look at it in more detail tomorrow. It usually takes quite sometime to go from experiments with mice to all the various stages with humans and then to actually prescribe a new drug. There is then the problem about the cost and how to fund it.
I do hope all will go well on Friday December 30th when you have your tenth dose of Taxol.
Before you know it the chemotherapy journey will be over.
It sounds as though you had a good, if hectic, Christmas. Make sure you rest before Friday.
I do not know if I could cope with 40C.
Thinking of you and sending best wishes.
Sylvia xxxx
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They say that Meditation is good for Stress relief!
Yup...
Oops!
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10 th dose of paxitaxol done and dusted. Shoulder still achy but have full range of movement. Other than that and a few problems with exposure to sun because of 40 degree heat scared but doing ok wearing long sleeves and big hat but wind very hot so have to stay inside. Finish treatment on 12 th Jan mapping for rads and scan in 16 th for which I'm
Terrified. Then 4 weeks rads start on 30th. Only need breast and boost on suture line as no lymph involvement. Cough has gone but I'm terrified still
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Hello Kath,
Thank you for your post.You must be feeling good to know that you have nearly finished your chemotherapy journey.
I did tell you at the start that you would get through this. I shall certainly be thinking of you on January 12th when you finish.
Be very careful about that hot sun of yours.
There is nothing to fear from the mapping out for your radiotherapy. You will just be placed on a prototype of the actual radiotherapy machine and the area for radiotherapy will be clearly outlined with indelible dots. For the actual treatment you will be placed on the large machine, very carefully. You will be left alone in this room with all the lights dimmed, the radiologist will leave, and start the machine from outside. The actual treatment is over very quickly. I used to close my eyes and count slowly to sixty.
You must take extra care with your skin during this time. You should follow the instructions you are given to the letter and you will be fine. I was told I could shower, but to use un-perfumed Simple Soap or aqueous cream. You should not use any soap with metal in it or talcum powder.
Radiotherapy can make you very tired so you need to rest and stay out of the sun. Most women seem to find radiotherapy much easier than chemotherapy.
The tiring thing is that you have to go every day for five days a week and then have a break at weekends.
I have read the article from the Garvan Institute of Medical Research with great interest. I shall post about it in another post.
I must say that I am surprised that there has been no comments about this important article from anyone on the thread as yet. In fact, this thread is unusually quiet so I am putting it down to post-Christmas syndrome and pre-New Year's Eve syndrome. Are you doing anything special?
I do hope the thread will come back to life, as it is very important to keep up support and information to those going through treatment.
Do not worry about scans to monitor what is going on with you. Remember they are there to help you.
Wishing you a happy, healthy New Year.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I am writing about the link that Kath very kindly posted. I was wondering whether any of you have read it and if so what you think about it.
The title of the paper is "Two is better than one: New combination approach halts breast cancer spread in mice."
"Garvan scientists have uncovered a new way to decrease the spread of breast cancer. The findings could lead to a new combination therapy with the anti-metastasis drug dasatinib."
I cannot go into all the details, but briefly it has been shown that "A well known 'survival protein' (MCL-1) is important in the spread (metastasis) of mammary tumours – and that blocking MCL-1 can decrease cancer spread, importantly blocking MCL-1 can 'turbo-charge' the anti-metastatic drug dasatinib, suggesting possible future combination therapies to combat metastatic breast cancer".
From what I understand researchers knew that the protein MCL-1 "Is well known as a 'survival factor' that can flick the switch between life and death in cancer cells – but until now no one has ever shown that it helps cancer spread".
If I understand correctly, it seems that switching off MCL-1 causes cancer cells to die.
It seems that, basically, blocking MCL-1 and using the drug dasatinib (Sprycel) is more effective than one of them alone.
Since stage 4 on metastatic breast cancer is the hardest to treat, this is encouraging news.
What we need to know is how long all this is going to take to come to fruition. We also need to know how much it will cost and the side effects.
On another matter, in the news yesterday was a relatively new drug that is being used for breast cancer will not be approved by NICE because of the cost. It was quoted as £90,000 per year.
That is all for today.
A happy and healthy New Year to all of you.
Fond thoughts.
Sylvia xxxx
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