Calling all triple negative breast cancer patients in the UK
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Hi Beautiful Ladies in the UK!
The Moonshot Program by MD Anderson, (focusing on breast and ovarian cancers, as well as other cancers that needed more treatment resources), is updated here within this video.
https://www.mdanderson.org/cancermoonshots/cancer-types/breast.html
Sending my love and hugs to all of you!
Debra
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Hi, Dolce,
Thanks for the link, very interesting. I had no idea there were so many subtypes within the TNBC diagnosis. That would help if docs could zero in on a specific target. Much better than the "blanket bombing" I and so many others endured only 3 years ago.
I hope you are doing very well!
Mary
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Hi Sylvia and Adagio,
I decided to address this to both of you, the grande dames of this thread; hope you don't mind being called a grande dame! I am slightly less grande, having been here a shorter time than both of you!
I have gone as far as dragging out suitcases and wondering which to take for my trip, I usually overpack and am going to try and avoid it this time. I am also going to try and avoid silly mistakes such as this: when we went to Aruba I took a ziplock bag filled with epsom salts because I love soaking in it. Big error! I'm sure the inspectors thought it was drugs, they opened the bag but did not re-seal it and just tossed it back in suitcase. So when I got to Aruba I had a bag of clothing full of epsom salt! Flying used to be a pleasant experience, no longer. I agree with you, it's necessary at times but drug dealers and terrorists have taken all the fun out of it. How innocent we used to be!
I have not yet had the cortisone shot, I am slated to have it next week. I am hoping to be over this allergy/sinusitis/whatever by then. We did finally have some rain last night, that should help wash down some of the fuzzy green pollen floating around.
We are all suffering from TMI, too much information! Like Adagio, I end up feeling as if I'm not doing enough. . And when I get serious about moving forward to make myself better, something seems to pull me back again; such as my knee, or as in the last 2 weeks, this allergy/sinus/ cold/whatever stuff, or both.
I had my 6 month oncologist check-yesterday. She did her usual perfunctory routine, checked for lumps, asked about other symptoms, and listened to lungs. And then left in a whirl. I am going to ask next time how many patients she sees in a day, it's got to be a lot because I got less than 5 minutes. And then I had asked her nurse a month ago if I was getting my annual blood labs done while there because then I wouldn't need to have it done at my GP. She said yes, they would. Well, nobody took any blood; when I asked about it I got a blank look. They finally did do it, but I ended up being there well over an hour, with the actual doctor visit about 3-4 minutes! I know that there is not much more they can check, but if I ever have a recurrence I will take myself and my records elsewhere. I think. Everyone just seemed in such a rush yesterday, it is really dehumanizing for the patient.
Sophie Sabbage is really something. She has so much tenacity, and energy while seemingly also very ill, with so many different tumors. I haven't checked her out on Facebook yet.
Sylvia, what is the General Election being called for specifically? I could look it up but will be lazy and let you tell me.
As for things taking a long time to really heal, perhaps we have just become more aware of our bodies and healing than we were before? My niece (young) suffered a badly twisted broken leg in December, she is an RN who works in a busy hospital and has to do a lot of walking (running). She was told she wouldn't be back at work for 3 months, she has finally gone back 4 months later and is still in excruciating pain after her night's work. She is now looking for a day shift with less walking because she is pretty sure it's going to be a year before she is really comfortable again. I had an injection above my ankle for a varicose vein, it hurt for almost a year; when I questioned the doc about it, I got no answers. I have just become very cautious about what I allow to be done to myself, nothing is as simple as it sounds, That includes the shot into my knee, although my acupuncture doc has told me that there are very few nerves that are in danger of being interfered with in the administration of that shot, and he thinks it may help. I do trust him, he is very much into "less is more".
As for MOs telling patients they are "cured", I did manage to ask my doc that question yesterday before she ran out of the room; she said she will tell cancer patients they are "cured" after 10 years survival. Hmmmm......not sure I believe that.
I must close for now, I will talk to you both again soon,
I hope Gina is doing well too,
Love, Mary
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Hello adagio,
Thank you for your post. It is always interesting to hear from you and you have kept going on the thread for quite a while.
I think the people in the UK are probably getting weary of elections and politicians. I was not surprised that the Prime Minister Theresa May called an election. There are various points of view as to why she called this election, but I feel she had to do it to get a mandate from the people. After the referendum Prime Minister David Cameron resigned because he did not like the result of the referendum, in which the people voted to leave the EU by 52% to 48% opposed. I think Cameron was confident the Remain vote would win and was shocked when it lost. He stood down immediately, so there had to be a leadership contest for the Conservative Party. Theresa May won that, so she became Prime Minister on a handful of votes from Conservative MPs. She was also on the Remain side, but said she accepted the result and would start proceedings to implement the exit from the EU. She did virtually nothing for almost a year, but Article 50 was triggered recently and the process has begun. It will take at least two years to exit from the EU, and some say many more years. She needs to win the election for the Conservative Party in order to have a strong mandate while she is fighting the EU bureaucrats to get a fair deal when we exit. I believe she will make compromises and that we shall not get the strong Brexit that the people voted for. The main reason for leaving the EU was in order to have control of our borders on immigration. There are thousands of them just walking through and we are losing our identity as a country. We also needed to rid ourselves of the anti-democratic institution that is the EU and it has been making all our laws for us. I do hope this makes the situation a bit clearer. I am not sure what is going to happen. We had a General Election in 2015, in which Cameron won because he promised to let the people have a referendum, but he tripped up because it did not go the way he thought it would. He also was afraid of the popularity of Nigel Farage and his UKIP party. Nigel Farage is the hero of the day because he fought for twenty-five years for a referendum on the EU. He knocks sparks off all the politicians here. Watch this space for the result!
I do agree with you about the importance of getting enough rest. I can imagine that you need a lot more after looking after your daughter and the new baby. I think we all need to take a break when our body starts to tell us that we are doing too much. You are right that we have to know our limits and pace ourselves. I am beginning to learn this because once I get started on something I do not know when to stop.
As for Herceptin, I think orthodox medicine will use it to the full to fight HER2+ receptors. I remember clearly that back in 2005 when I was diagnosed, women here were fighting for it and without it there seemed very little hope. I know that is very damaging to the heart. If I count up the number of women in my immediate surroundings here, there have been six in my apartment complex of twenty-one dwellings to have gone through breast cancer. Of these six, one had triple positive, four had hormonal and I had triple negative. Out of the six two have died, the one with triple positive that became metastatic, and the other a very elderly lady with hormonal cancer in both breasts. She survived the breast cancer, having had both breasts removed and radiotherapy. She died some years later of old age, but I wonder what kind of toll the cancer and treatment took on her. Of the others one with hormonal is alive sixteen years on, one has had metastatic breast cancer for two years and it came back after thirteen. Another with hormonal has survived a year since diagnosis. I have was alone here in my complex with triple negative and today I am now eleven years and ten months since diagnosis. I do not know what we can make of all that. The daughter of a friend and neighbour here, who was diagnosed like me in June 2005 hs had her triple negative breast cancer come back this year. I am not sure what has happened. She has a tumour in the other breast but I am not sure whether it is a new one or whether it has come from the tumour she had in the other breast.
Like you, I do not take in everything from the Chris Woollams newsletter but I think I take in the most important. I feel that taking vitamin D and good probiotic supplements are important, as well as staying away from sugar, dairy products and junk food.
I do not know what has happened to Gina. She may be concentrating on her humour thread. I have been so busy that I have not had time to have a read of other threads. I usually read the most active topics on a regular basis.
Enjoy the Spring.
Love.
Sylvia xxxx
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Hello Val, Mary, Kath and InspiredbyDolce,
Thank you for your posts. I shall answer tomorrow when I hope to have more time.
Hello Rhonda, Lou and Pam.
I hope all is going well with you. Please let us know how you are.
Best wishes to all of you.
Love.
Sylvia xxxx
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Hi Sylvia,
I had my #10/12 last Wednesday but with Taxol only. My MO cancelled Carboplatin because of the constant ringing in my right ear. He is worried that it might lead to permanent damage if we continue. He added it to Taxol last time because my genetic test result is not out yet but since it is negative he decided to discontinue it.
With Taxol alone I am a bit more active. The reason I have not been posting much.
Best regards,
Lou
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Hello Val,
Thank you for your post. I do like it when I hear from the members of our group. It has been very quiet lately. Most have finished their treatment but we still have Rhonda and Lou going through treatment.
It is good to know that you want to be informed about what goes on in the UK. You will see on my post to adagio that I have explained what I think is going on here.
I agree with you that the general public need to be more educated about cancer in general and breast cancer in particular. I am not sure that in the UK we are informed as much as we should be as patients. I believe that we all need to take control of our treatment and tell ourselves all the time that we have to be in control of what is done to us. We must keep asking questions and asking for explanations.
I was very interested to know that you had been a runner.
Time has certainly gone by and it is hard to believe that seventeen months have gone by since you were diagnosed. You have been through a lot, but you have come through it all.
Keep well and keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Debra (InspiredbyDolce),
Thank you for your post and for the link.
It is always nice to have you on the thread. I see that it is not far off five years since you joined. Not many remain with us for this long. It looks as though you joined the same year as adagio.
How is life treating you these days?
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I do hope that you are having a relaxing weekend.
What is the news from Australia these days?
Thinking of you.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I did have a good chuckle about the Epsom salts.
I do hope the cortisone shot works for you.
When exactly are you leaving for your holiday?
I definitely think we are suffering from too much information. There is no way we are going to retain it all. I am sure that in this group we are doing all that we can to help ourselves. You will have read my posts and those of adagio about the most important things in our lives. Eating properly, keeping active, physically and mentally, getting plenty of rest, avoiding stress and just living the day.
I was glad to know that all went well with your 6-month check up with your oncologist. I must say that your check up seemed rather short. It seems that the medical staff here and over in your country have too much to do. I watched a programme on television about the day in the life of a junior doctor in an NHS hospital. It was horrendous. It is no wonder that we are being told that 6,000 doctors enter the profession here every year, and 6,000 leave every year! These are replaced by foreign doctors. I do not think we should be poaching doctors from other countries and we do not know how qualified they are.
Mary, if you read my post to adagio you will get all the details about our General Election.
I do not think oncologists should be telling patients they are cured, even after ten years. Two of my neighbours here had their cancers come back and spread after thirteen years. We can never tke anything for granted.
That is all for now.
Love.
Sylvia xxxx
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Hello Lou,
It is always a pleasure to hear from you. Congratulations on finishing infusion 10 of 12. you are nearly there. I was interested to know that your oncologist cancelled the carboplatin infusion because of the constant ringing in your ear. I would think that Taxol (paclitaxel) is enough to deal with. I do wonder about adding other drugs. Why did your oncologist decide on adding carboplatin in the first place? Has the ringing in your ears stopped? Is it an established side effect of carboplatin?
I have just seen on your post that you had the carboplatin because you had not had the results of genetic testing, but that you now have those, and so the oncologist thought it was not needed.
I was glad to know that you feel a bit more active with just the Taxol alone.
What have you been doing to have a bit of enjoyment after chemotherapy?
Please keep in touch with us as without posts there is no thread.
Sending you my very best wishes.
Sylvia xxxx
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Hello everyone,
I do hope we shall hear from those of you who have not posted recently. We are sadly lacking in posts from the UK.
I do hope all is well with the rest of you round the world.
Greetings to Hanieh, Marias, Gina, Amanda, Jackpot, 4everStrong and any others that I may have forgotten.
I hope you are all having a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello nili
I was looking back through the posts and noticed that you have not posted in a while. I was wondering whether everything is alright with you and how everything was going. It would be nice to hear from you.
Fond thoughts.
Sylvia xxxx
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Hi Slyvia
Thank you. Heading to Dubbo for work next week which is an 8 hour drive. I manage TBservices for the local health district and cover 450000sq kilometres. I run clinics for new immigrants who come from high incidence countries and who have. a tb risk. Then I head to Adelaide for my daughters wedding on the 6 May.
My sutures in the back of my neck are healing nicely and I'm glad I got it taken off. I've had them removed from my nose and leg before cancer and didn't bat an eyelid but now I panic with everything and that awful terror returns.I know I had this before chemo and I think the taxol aggravated it along with a few sunburns during our 45 degree heat. I just hate that horrible feeling u get when u wait for results. My dr was very happy but I'm still absolutely terrified.
Hope everyone is well
Cheers
Kath
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Hi Sylvia,
Yes as per MO, Carboplatin is known for ringing in the ears SE. He is afraid if we continue it might do permanent damage because I am hard of hearing already. I did tell him that it doesn't bother me much though.
I tried to go out as much as possible like before to bring my DS for indoor and outdoor activities either around the neighbourhood or in malls. Other times we go for swimming. He only attends once a week playgroup and he have nobody to play with everyday.
Best regards,
Lou
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Hi Sylvia,
I have have my 3rd Herceptin and Perjeta tomorrow.I have been feeling tired lately.I wanted to take a walk because it was so beautiful and instead I took a long nap.This week I will be busy with medical appointments.I meet with my radiologist on Tuesday and Wednesday I have an echocardiogram.Sometimes I can't believe this is me. Much hair is starting to grow and I am not wearing a wig.My eyebrows and lashes seen coming in and that made me happy.
Rhond
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Hello Kath,
Thank you for your post. I was most interested to know that your work is about TB services for your local health district and am amazed at the kilometres that you cover. It sounds like stressful work to me. In the UK we now have a problem with TB because of the number of immigrants coming into the country and bringing it with them. It had been eradicated, but now we have a virulent strain of it and it is difficult to treat.
I was glad to know that you were then going to Adelaide for your daughter's wedding on May 6th.
I cannot believe the amount of driving that you do.
I was glad to know that the sutures on the back of your neck are healing nicely. I can understand how anything like this sends you into a panic.
Try to relax and enjoy your daughter's wedding.
Fond thoughts.
Sylvia xxxx
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Hello Lou,
thank you for your post. It is a good thing that you have been taken off the carboplatin. You do not want damage to your ears.
It is good that you are getting out as much as possible and enjoying activities with your son.
All this treatment will soon be behind you and you can get back to normal.
Sending you fond thoughts.
Sylvia xxxx
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Hello Rhonda,
I think you did the right thing when you had a long nap because you were feeling tired. Sleeping is good for helping the immune system.
I do hope all will go well this week with all your medical appointments. Be sure to let us know how you get on.
You will get back to normal and with your hair growing back and your eyebrows and lashes coming in you will feel much better. Each step towards a normal life brings back a bit of happiness.
Hang in there.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Yes life is very busy. I am try to relax and my dr tells me all is good but u are right it's very hard. Pre cancer I wouldn't have batted an eyelid and in fact I have had them removed before being a redhead.
Today it's a public holiday in Australia as we commemorate ANZAC day which is the Australian and New Zealand Army core landing at Gallipoli Cove during the First World War . It's quite a moving day and is celebrated all over Australia and New Zealand and commemorates all of those forces in all theatres of war. A very large contingent from Australia also travels to Gallipoli Cove every year. The history behind the landing is very interesting and when they play the last post it gets me every time. The ceremony at Anzac Cove was televised this year and it was great to see people from all nations all over the world there united in peacetogether celebrating the bravery of all of these men.
Cheers
Karh
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Hi, Kath,
Wanted to say that over here in USA we were not taught about the battle of Gallipoli that I recall, my first knowledge of it was in the 1981 movie by that name with Mel Gibson as one of the stars. I was already enamored with Mel Gibson after seeing Mad Max, and so watched this movie and it was a good movie. And thus learned the story of the battle, although dramatized of course, for the movie. I still have a soft spot for Gibson, even after all his peccadilloes of later years. I also like some of your other exported celebrities, like Keith Urban and his wife Nicole Kidman.
Glad you got your skin issues cleared up, I imagine the sun is relentless there, especially for a redhead!
I imagine ANZAC day is similar to DDay for us, when many people travel to Normandy in France to observe the anniversary of the landing on the beach there. It's always so sad to me to think of all the young lives lost in wars, mostly young men, over all these years. What would all of them have achieved in their lives if not struck down so young?
Talk to you later, Mary
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hi Mary
The first mad max movie was actually filmed in Broken Hill where I live ha ha. The car chases were done on Mundi Mundi plain which goes on forever. I remember it well. Nicole Kidman has also been to Broken Hill to make a movie and my husband who is an airport security officer met her when she flew in in her Lear jet.
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Hi, Sylvia,
I read your account of the goings-on in your political picture, and how all are waiting now for June 8 for the next Election. I saw an article this morning that said bookmakers are heavily favoring Theresa May to win. I think you are probably right that no matter what happens, the rolling out of Brexit will be a long painful process, with much foot-dragging and wrenches thrown in the works. I do admire Nigel Farage, I just think he has so much grit to keep on as he does.
Of the people with breast cancer I know, the very large majority have the E+ variety, have finished their chemo and are now taking an AI of some kind. I know several women who had DCIS BC, these lucky ladies had only surgery and no chemo or radiation. I only know one other woman with TNBC, she has been on oral meds of one kind or another since she finished chemo and radiation about 5 years ago. I only know one lady here, a friend of a friend, who has the H+ variety, she is almost finished with her long chemo journey, and is doing quite well. My dear aunt passed away in 2015 of pancreatic cancer, she had BC DCIS about 30 years earlier, the docs said the 2 cancers were not related. Like you, I have no idea what any of this means, except that there are too many women with BC! I don't know any men who have BC, around here the prevalent cancers men seem to have are prostate and bladder.
I really am going to ask my oncologist's nurse how many patients the doc is squeezing into a day the next time I get a chance. I do know they changed my appointment because it was supposed to be this week, but apparently something came up, like a vacation, and they put me last week instead. So probably she was extra busy, but still.....it doesn't seem right that she spent so little time with me.
I am leaving here on May 4, and arriving in London the next day, there for one hour, and then on to Rome. Returning home late on May 16, hopefully with many good memories. I was driving yesterday and listening to the world news, there certainly is a lot of unrest everywhere right now. I had the thought of "what am I flying into?" But there you are, the die is cast, and off we will go! We will be the blind leading the blind, since neither of us have ever been to Europe and I speak only a little Spanish as far as foreign languages go. We have been assured by the ship's coordinator that we will not have a problem, I do know many Italian words, and I have my pocket book and phone app and know north from south. My sis-in-law has unquenchable energy and brilliant charm, It will be an adventure for us for sure.
I need to get my things organized for the trip, I am usually last minute but am trying to do better.
I shall talk to you again soon,
Love, Mary
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Hi Ladies,
Just to update. I had my #11/12 of Taxol yesterday. One more to go to do the happy dance, yippee!
Side effects is mostly the numbness in fingertips and soles of the feet.
My eyebrows and lashes totally abandoned me. I started drawing my brows from day 1 of Taxol when it started to thin out and my helper is praising me that I am getting good at it. I am happy with the compliment but I am wondering when did it grow back for you?
I am not really bothered by it but I am planning for a 2 weeks holiday in Philippines and I wanted to spend most of it in swimming pools and beaches but drawing an eyebrow will definitely be washed off. The bald head is not so bad as my hair is growing a bit even though not filling up yet and I can always use a swim cap to cover it. Going to get extra dose of Vitamin D when I get there.
I also wanted to visit my relatives and didn't want them to see me still looking like a cancer patient. I want them to be happy to see me and not feel sorry for me because then I might feel sorry for myself. I want it to be a happy reunion.
I can't put it on hold because my Sister who is working in Spain will be back also after almost 4 years and not sure when we will get the chance to visit Philippines together again. I haven't seen her also that long.
Best regards,
Lou
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Hello Kath,
Thank you for your post and the photograph. We do have to remember what all these people went through, not just in the First World War but all the others since. Politicians start wars but they expect ordinary people to fight them and make sacrifices.
Fond thoughts.
Sylvia xxxx
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Hello Lou and Mary,
Thank you for your posts. I hope to be able to reply later on today.
Fond thoughts.
Sylvia xxxx
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HI, Sylvia,
I was listening to radio in the car yesterday, Doctor Radio, I like to listen when they are on an interesting subject. They were talking about all things to do with lungs, pulmonology. I perked up my ears since I was a smoker for 28 years. I quit smoking 21 years ago. Also with TNBC, I was told from the beginning that if I have a recurrence, the odds are it would be in the lungs or brain. So the guest doctor was saying that they now have a low-dose screening CT scan that they want to use more widely to try and find very early, very small lung nodules. I thought that was good news, since lung cancer is one of the more dangerous cancers, because by the time one knows one has it, it has usually progressed. However, since nothing is perfect, it also picks up all kinds of small spots and bumps that are not cancerous, thus possibly subjecting a patient to unnecessary biopsies and worry. I thought it was hopeful news; when I have asked my MO about being screened for lung problems, she just said "but you don't have any symptoms." Seems to me by the time you have symptoms, it's rather late!
The regular CT scans give a patient too much radiation when done over and over, and the regular chest x-ray is not effective for picking up early lung nodules.
Okay, I'm off.
Love, Mary
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My first peony bloom, smells so wonderful! Was very windy, couldn't get a good pose. Viburnum bush in background
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Hello Mary,
Thank you for your post. Like you, I have a great admiration for Nigel Farage and I listen to his phone in on LBC all four days a week. He has a great following and has so much to say. Without him we would not have had the referendum. I wish he had stayed as the leader of UKIP.
I was wondering about the woman you mentioned who had had TNBC. I was puzzled about what oral meds she would be taking. Like you, I think there are too many women being diagnosed with breast cancer and at younger and younger ages. There has got to be a reason. I think it is the same scenario with men and prostate cancer. Too many are being diagnosed.
The check up appointments for breast cancer here in England are quite short. They are just a physical examination and the oncologist is looking for everything to be smooth. A neighbour here who was diagnosed last year has just had one of these check ups a year later. Back in 2005, when I was diagnosed, the check ups were every three months.
I shall be thinking of you on May 4th when you leave for London. I do hope you have a thoroughly enjoyable time.
I am sure you will be fine with the language and can probably get by with English.
I shall look forward to hearing about your adventures.
Take care.
Love.
Sylvia xxxx
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