Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
Have you read link 14 from Michael? I have just printed it out but have yet to read it. I find I am chasing time every day.
When are you leaving for Texas?
I was very interested to know that you play the guitar. What kind of music do you play?
Talk to you soon.
Best wishes
Sylvia xxxx
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Hi Sylvia,
For some reason, I was unable to get to Michael's Post #14. It would not open for me.
I hope to leave for Texas tomorrow. I had something pop up yesterday, however. Back in February I had resumed the treatment of varicose veins that I had to halt when I was diagnosed with cancer. They injected my rt. leg with a schlerosing agent that shuts down the offending veins. I learned afterwards that they are now using a larger dose so as to cut down the times the patient has to return for more injections. Well, it was very painful for a couple of weeks, and has been slightly swollen ever since.. My leg had a dark streak which was the vein dying, to put it simply, which was not alarming because I have seen that before. Yesterday it developed a lump in the vein that I haven't seen before, so I am going to see about that today. Which is annoying because I am supposed to see my acupuncturist. Hopefully I will be told not to worry about it, perhaps they will have to drain it, I don't know. I know one thing, I am about done with having any procedures that involve sticking (except for acupuncture), cutting, injecting etc. It seems everything I have done to try to make things better for myself has only caused more problems.
I do have a guitar, I am not sure I deserve the title of guitar player. I have taken lessons, I have gone through periods where I practiced for at least an hour a day, and I am still not much good. However, I do enjoy getting it out periodically and singing along with my playing. When my family has a largish get-together we usually do end up in a heap with guitars and singing till the small hours of the morning, since we have several musically talented family members.
I suppose the kind of music I enjoy playing and singing is classic rock, country-rock, country, and soulful ballads. I would like to get my nerve up and incorporate my playing into the church choir, but it would have to be simple songs!
That's it for now, I am planning on taking my tablet with me so I will keep up with this group while gone.
Talk soon, Mary
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Mary,
Have a wonderful trip in Texas - that is one state that I want to visit - I just love the Texan way of talking. I have heard that San Antonio is quite lovely!! Which part are you visiting?
Sorry to hear about the setback with your varicose veins treatments? Hopefully it will be nothing too much to worry about. I have some varicose veins in my right leg which I will leave well alone since they do not bother me (apart from their appearance). I have had varicose veins to some extent fo some time - in fact many years ago I even had surgery on them which I would not recommend!
My iPad is acting weird, so I will resume later when I get to my main computer - in the meantime - take it easy and look after yourself.
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Hello Moreshoes.
I was just wondering how you are getting on. I hope all is ok,
Fond thoughts.
Sylvia xxx,
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Hello Mary,
I was sorry to know that you could not get link 14 yesterday. Apparently, when you click on the link, you get to PubMed and then you have to register to be allowed to read it. I have read it but do not quite know what to make of it. I am very sceptical about anything that includes taking more drugs. This all seemed to be about using more drugs for TNBC. Since I believe that a lot of cancer patients die from the toxicity of the drugs and not the cancer, I am a bit wary.
I do hope all goes well with your problems with varicose veins. This is not what you want just before setting off on a long journey to see your brother.
I was so glad to know you will keep in touch while you are away.
I like all sorts of music and have really kept with those that I liked when I was much younger. I love Elvis Presley, Roy Orbison, Buddy Holly, Slim Whitman, Bill Hayley, Johnny Cash, John Denver, Joan Baez, Glen Campbell and many others from that era. I really like Lonnie Donnegan, the King of Skiffle, a Londoner, now dead, and who used to sing the Rock Island Line.
I bet your get togethers are really enjoyable.
I also love arias and some classical, not to mention French singers like Edith Piaf and Charles Aznavour.
Thinking of you and sending best wishes your way.
Sylvia xxxx
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Hello Sylvia,
How thoughtful of you to ask. I've decided to stay in the Netherlands and follow my doctors' advice. Besides, it's the same protocol like the one from MD Anderson. Unfortunately that means that I have to do BMX. I hate the idea, I'm scared, I'm grieving for my breast. I'm trying to keep myself busy, hopefully I can sleep decently tonight cause I hardly slept the previous three nights and I'm tired.
I love all the flowers' photos. It reminds me to plant soon whatever I want, cause it'd be impossible to do anything after the MX.
There's a teacher's week? I'm aslo a teacher and we're treated like dirt over here.
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Hello MoreShoes,
I think you are probably right about staying in the Netherlands as protocols are much the same in Western countries. As for following your doctor's advice, that is a big decision that you have to make, because it is your body. Having a bilateral mastectomy is a big decision, but women on the bc.org forums do have them and they do recover. I can understand that you hate the idea of losing your breast and I can understand that you are going through grief at the thought of this. I know how frightened I was nearly eleven years ago, when I was told I would have to have a mastectomy of the right breast. I remember crying one Tuesday evening, as I never thought I could cry, but afterwards I somehow went through with it and then it did not seem to bother me so much. I now do not really think about it. If you decide to have it you will get through it. Will you have reconstruction surgery afterwards? A lot of the younger women seem to opt for this but I did not want it.
Do you think you have been advised to have this because of the recent diagnosis of IBC?
When you were first diagnosed and had chemotherapy, did you have a taxane drug, either paclitaxel (Taxol) or docetaxel (Taxotere), as these drugs are highly effective, we are told, with TNBC. If not, might it be an option now?
May I ask how old you are? I ask this because TNBC often affects younger women.
You might be being advised to have a bilateral mastectomy because of this gene of unknown type.
Let us know how we can help you to get through this.
Mary, Hanieh, adagio, Amanda, Michael and others are really fine people who have lots of compassion and we all know what this cancer journey is like and how frightening it must be to be going through this for the third time.
After I had my mastectomy of the right breast, I was in hospital for five days while the drains that are inserted cleared. I think in the hospitals here they now seem to send patients home sooner, with the drains, and a district nurse comes in to deal with them. The next day after my surgery a physiotherapist came to see me and showed me exercises to start straight away. I had a little bit of numbness in the upper arm, but this soon disappeared.
I hope this helps. This was my own experience, but we are all individual. By the way, I had no pain after surgery. I did look at my post-surgery scar very quickly and everything looked clean and tidy. My breast cancer surgeon, a woman, did an excellent job.
I was glad to know you liked all the photographs of flowers. I do think they are good therapy on the thread. I hope you get to plant some soon.
Please keep in touch. You can say anything you like here and we shall be only too glad to help.
I was interested to know that you are a teacher. We seem to collect them on this thread. We did have one from Malta and she was a great asset. I am a teacher and have taught 12 to 18. I have taught both French and English as a second language. What do you teach? I think it is sad that education is now taken so much for granted in the Western World. I thought the teachers' week in Iran sounded amazing.
Thinking of you and telling you that you will get through this.
Sylvia xxxx
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Hello Tom,
We have not heard from you for some time and I was wondering how you, your wife and children were getting on. I do hope all is well.
I do hope you are still viewing when you have the time and I was wondering whether you are reading Michael's links and what you think of them.
Best wishes from all of us.
Sylvia.
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Hello Numb, Hello shorfi,
I was wondering how you both were. I hope all is fine.
Best wishes,
Sylvia xxxx
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Hello Mary and Hanieh,
I was just wondering if you have seen the new thread created by the moderators about members' stories and what you think?
Since you, Mary and I all wrote out our stories for Survivors Stories Around the World, i was wondering what you thought the difference is between these two threads?
I suppose the difference is that this is specific to TNBC. I cannot think of anything else.
Keep posting.
Love to you both.
Sylvia xxxx
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Hello Jolie in Australia,
I have had a bit of time to look at some of past posts and realised that we had not heard from you for some time.When you last posted you sounded a bit down and you were adapting to life post treatment and being back at work.
I do hope things are better now and that you have less pain.
I would to hear to hear from you.
Fond thoughts, Sylvia.xxx
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Hello Penzance,
I was wondering how things have turned out for you. I remember you were having a lot of problems.
Remember we are here for you. Did you go back to France?
Let us know there is a happy ending to your story,
Fond thoughts,
Sylvia.xxx
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HI, Adagio, Silvia and all,
I saw the doc about my leg, he said it is a normal thing to happen. I think what did set it off was the fact that I have been doing a lot of physical labor outside the last week+. I was probably supposed to be wearing my support hose since my leg is not finished healing while I was doing this. I had another very busy day yesterday and my leg was rather uncomfortable by nighttime. It was 92 humid degrees yesterday, I could not face wearing the stockings! Today is much cooler, and the doc and his staff advised me to wear the stocking while driving, that I can do. Oh well, as I said before, it will take a lot of convincing before I decide to do this procedure on the other leg.
Adagio, my brother and his wife live about an hour's drive from San Antonio, I am pretty sure they will want to take me there, I have not seen that city and am looking forward to it; the Alamo and the River Walk. I am also going to tell them they don't have to entertain me every minute, I am looking forward to some relaxation time. It seems when I am at home it is so hard to do that, there are always things to take care of and I am always busy. Another really lovely area in Texas is Kerrville, have you been there? I also would like to see the Big Bend area. I used to live in New Mexico, one of the neighboring states. There are some awesome places there as well.
Sylvia, I like your list of favorite singers. I have too many favorites to list, some of the English ones spring to mind since I am talking to you. I remember vividly when the British Invasion started, and when the Beatles first appeared on TV here. I am amazed the Rolling Stones are still performing, I got to see them in concert many years ago, always liked them too. I used to have a huge poster of Peter Noone of the Herman's Hermits on my teen-aged bedroom wall, I think he is still around too. Recently the 2016 Rock and Roll Hall of Fame Inductees show was on TV, really enjoyed that. Hard to believe these bands, Chicago, Deep Purple, Steve Miller, Cheap Trick are all still touring and they are touring a lot! Good for them! I also enjoy watching the Country Music Awards shows. My mother was musical, she played the piano and was the conductor of the school band. Her sister played violin. Sadly, mother died so young; I heard she was going to teach me piano but there just wasn't time and that didn't happen. I don't know much about Opera, except on rare occasions I listen on the radio while driving. I bought a CD once of operatic Ave Marias, I loved it and sadly have lost it. It was about 8 different versions of the song (I love that song, for some reason) by sopranos and coloraturas, I think that's right. I think the only genre of music I do not care for is jazz.
Well, I had better get going, I will talk to you soon.
Greetings to all the people Sylvia is reaching out to, hope all are well.
Mary
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Hello everyone,
There seems to be a lot of conversation about stage of cancer tumour on some of the threads, so I thought I would post the following chart about how these stages are arrived at by the medical experts. We all know, or should know, that stages go from 0 to 4. This is a chart that I have copied from the Merck Manual Home Health Handbook. I hope everyone will find it useful. It is best not to worry about the stage on diagnosis, as your treatment will deal with shrinking tumours or getting rid of them.
Do not mix up stage with grade. Most TNBC tumours are grade 3 but not all of them are. Some are grade 2.
Get used to asking your medical team questions, such as what is the size of my tumour, what is the grade, what chemotherapy drugs are you going to suggest and why, what kind of surgery do I need and why, shall I need radiotherapy and for how long, and so on and so forth? Do not be afraid to ask as many questions as you feel you may need.
Best wishes
Sylvia
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Hello Mary,
Once again, thank you for an interesting post. I shall answer later on today.
I hope you have a good journey to Texas.
Fond thoughts.
Sylvia xxxx
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Hello everyone again,
I forgot to say that in addition to your receptor status, mainly whether it is hormonal or non-hormonal, you should also be asking what kind of breast cancer you have. The most common is IDC, invasive ductal carcinoma, which describes cancer of no particular type. Other cancers might be inflammatory breast cancer, IBC, lobular breast cancer, LBC. These may influence the stage, or such is my understanding. There is also DCIS and LCIS, which some say is a pre cancer status and may not develop into full blown cancer. It is best to discuss all this with your medical team.
Wishing all of you newly-diagnosed or going through treatment the very best. You can do this cancer journey.
Fond thoughts.
Sylvia
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Hello everyone again,
This is another chart that I have been reading in the Merck Medical book that I thought might be of help to everyone, especially those newly-diagnosed and those going through treatment.
Fond thoughts.
Sylvia
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Hi Sylvia, Mary,moreshoes and all
Sylvia, I completely agree with you that having a Teacher's Day is a very good gesture as you feel more motivated and more energised as see all your efforts are being appreciated by all. I had tons of messages from friends, family and others congratulating me on it.
Mary, thank you so much for your kind words. It's so nice of you to say such encouraging words. What lovely pictures you posted. Your flowers are amazing. I'm happy to see you live in such beauties. They must be your great healers.
Moreshoes, I am so sad to see what you are going through. It's really hard on you but as before you can overcome all difficulties. Keep us posted and count on us as your sympathetic friends.
Lots of love
Hanieh
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Hello everyone,
These are some local picture postcards that I bought the other day. I thought you might like to have a look at them.
Greetings from Exmouth.
Best wishes
Sylvia
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Hello Mary,
I was sorry to read you have had so much trouble with your leg and I understand your reluctance to have anything done with the other one. I feel that unless I have something really life threatening, I am going to steer clear of the medical establishment.
I do not think I could stand hot humid heat any more. At least in Exmouth we nearly always have a cool sea breeze.
There have been quite a few shot articles in various papers about cancer.
On Thursday May 12th 2016 there was an article in the i paper under Health by Paul Gallagher, Health Correspondent. It is entitled Fruit in teenage years could 'cut cancer risk'. It is worth looking at if you can trace it. I picked up on one paragraph which said that apples, bananas and grapes are among the best options during puberty and eating oranges and kale in early adulthood was associated with a reduced risk of the disease. These were the findings of a team of US scientists.
An article along the same lines was in the Daily Express on the same day by Giles Sheldrick. The title was Eat fruit and veg to avoid breast cancer. Again, the emphasis was on teenage years.
Another article by Giles Sheldrick was in the Daily Express on Friday May 13th. This article was entitled Radical new treatment to stop cancer spreading. To quote some lines: "Researchers made the breakthrough by halting a process called Autophargy which cells use to recycle themselves.
By doing this they stopped metastasis, the movement of the disease which causes 90% of cancer deaths.
During laboratory tests on mice scientists were able to stop the spread by removing two key genes, Atg5 and Atg7".
There is a lot more information about all this in the article. I do hope you will manage to read it.
Finally I saw a short article in the i paper which said that people with a suspected case of cancer will be given a definitive diagnosis within four weeks under ambitious plans to provide 'world class care in England'. This article is by Ella Pickover and I think it was in that paper on Friday May 13th.
That does not sound good enough to me and I think it has gone backwards since I was diagnosed.
I hope you have arrived safely in Texas and are having a good time.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
It was nice to hear from you. I am sure you deserve every word of praise for your dedication to teaching.
I was glad to know that you like the flowers that Mary posted. I think it is a good idea to post lots of photographs of nature in all its beauty and to cheer us up.
Thank you for your words of comfort and encouragement to moreshoes. She is going through a very difficult time.
It looks as though our group is on the move to foreign or distant climes. Michael was off to Poland, Mary should be in Texas now, adagio was off to Quebec, Canada, and Ann Arbor, Michigan, US. I do not know where Amanda is off to, but I know she likes Dubai in the UAE. Are you still thinking of going to China?
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Just back from Warsaw. I was very surprised at how lively and vibrant that city is. It was very enjoyable.
I think the elections were a mixed result for Labour better than expected in England and a disaster in Scotland and there will never be a another Labour government unless they can win in Scotland. In NI the big surprise that a Republic of Ireland party, People Before Profit, fielded one candidate and stormed to victory.
I went to a funeral today, an 85 year old who I would occasionally chat to in the pub. I think I saw him about three weeks ago and he seemed fine and then I heard that he had died on Wednesday with cancer throughout his body.
Here is link 15:
http://drugtopics.modernmedicine.com/drug-topics/n...
Michael
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Hello Michael,
Thank you for your post. It looks as though you had a good time in Poland.
I shall post more later on today.
Best wishes
Sylvia
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Brother'S back yard, very peaceful. Mary
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Hello Michael,
Please tell us a bit more about Warsaw, Is it very cosmopolitanism and multicultural?. Is it clean and tidy? What about litter?
Thank you for link 15. I shall look at it this coming week.
I do not know what to think about the latest election results, but I do feel a bit dejected about all politics lately. The media blame poor Jeremy for everything, and yet he is such a decent man, always polite and never says a bad word about anyone. I think he is too good for this country. I agree that the results for Labour in Scotland were a catastrophe and that cannot be blamed on Jeremy. I think the Scots at the moment feel that the SNP is to the left of Labour. I think it is going to take a long time to get better results in Scotland, the original home of Labour politics. I think that the Blairites will still to oust Jeremy. Everything seems to be getting nastier and nastier.
I think we should all be very concerned about all the cancer that is being diagnosed. one of our neighbours in the apartment complex died recently at age 91. He had been fighting leukaemia for 30 years, going in and out of remission. He was recently put on oral chemotherapy and I think this is what killed him. He was a very nice man and we shall all miss him.
I keep reading some of the posts on the TNBC threads and am horrified at so many young women being diagnosed with breast cancer. It is just not normal.
Keep in touch.
Best wishes
Sylvia
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Hello Mary,
I just sat down to reply to your psot, only to discover you had deleted it. I hope everything is alright with you.
Best wishes
Sylvia xxxx
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Hello Michael,
I forgot to say that I was most interested in the political party you mentioned in Northern Ireland, People Before Profit. Can you tell us more about this party and their victory. I have just been listening on the radio to a programme about all the rich people and their high living in Monaco. I was so disgusted that I turned it off! There is so mch harm being done in the name of profit and greed. Where is the moral conscience of these people?
Fond thoughts
Sylvia
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hello Sylvia,
I was trying to post a pic and failed, got frustrated and then distracted. I will try again to post a pic of my brother'S back yard where we enjoy watching the birds, rabbits, squirrels et al......so pleasant!
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Hello Sylvia and everyone,
I hope everyone is fit and well.
Sorry I have been MIA . I have been busy at work and torn between looking after my family and the increasing needs of my elderly parents. My father has been diagnosed with chronic heart failure and my mother has had bilateral knee replacements. So I have been busy trying to engage the services they need to keep them independant at home. Unfortunately they live a couple of hours away. Meanwhile, I continue to try and fit exercise in and eat well. I am coming up to my next 3 monthly check with my oncologist and I always start to feel a sense of dread. Does that ever go away? It will also be 18 months in June since I was diagnosed. Sorry I was so long between posts, I shall post more often as I value the discussions here.
Talk soon
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Hi Sylvia, Mary, Joliel and all
Sylvia I haven't decided on whether to go China or not. My husband and I am so busy that we haven't yet discussed where to travel too.
Mary , what a nice picture. That should be the heaven on the earth. I'm so happy you're in such a beautiful place. Enjoy it to the fullest.
Joliel, your question is mine too. I hope one day we get rid of all these anxieties.
Love
Hanieh
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