Calling all triple negative breast cancer patients in the UK
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Hello Gill,
Just a word to say that those vasodilators such as candesartan and losartan belong to the group of drugs known as angiotensinII blockers, as opposed to ACE inhibitors. It is mindboggling where all these names come from.
Love.
Sylvia xx
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Sylvia, Gill, Paula
I have more news this week. Last Tuesday I went for my second chemo infusion, when the Oncologist came in to see me before the infusion, he told me I would not have chemo that day, and would not have anymore chemo. He expained, I had genetic tests arly on, and there were more tests ordered which looked for Gene mutations, but they took longer to get back. Well, the results showed I have something called an EHRG-mutation, and of course I have a rare form which tends not to respond to chemo. So, no more chemo.
There's more, I have also gone from Stage 2 Lung Cancer to Stage 1. At the time of Biopsies there were seemingly 2 tumors, but the Pet Scan showed only one, so the smaller one was not a tumor.
So now the only treatment is surgery to remove the tumor, and that's it. There is only 1 drug for this and it is only for metastatic cancer. At Stage 1 I am not a candidate.
I do wish I'd had this info bfore the 1st chemo, since it has quite worn me out, I don't blame the Doc since he was acting on the best info he had at the time. I have to say I'm glad not to have any more chemo!
Well, what do you think, my friends?
Talk to you later, love, Mary
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Mary -
I’m glad that you will not have to endure any more chemo. As well as it does kill cancer cells it is so extremely hard on one’s body and mind! So glad to hear the staging has gone from 2 to 1. That is so encouraging! I know that lung cancer like breast cancer has a variety of types but my sister in law was diagnosed 7 years ago with lung cancer, no chemotherapy was prescribed, only surgery. She had her surgery and met with her oncologist for a couple of years but she is doing great. She’s a professional singer and even with the lung surgery she hasn’t given up singing she still has plenty of oxygen saturation. There are times she gets a bit out of breath but nothing that keeps her from doing what she wants to do. I think all of the news is encouraging. Do you know when surgery is and how it will be done? Do they know how much of the lung they will remove?
Love- Paula
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Thanks Paula, that is good to hear. I dont know anything about the surgery yet, I have appointments with 2 of the surgeons. The Onco said to go to whichever is ready first, to move ahead with surgery. Apparently all surgeons are very busy.
I'm glad your sister-in-law is doing so well!
One of my consults is 4-16, one is 4-29.
Later, Mary
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Hello Mary,
I have just read your posts with great interest and am truly amazed at what you have had to say.
I am very glad that you do not have to endure any more chemotherapy as that will enable you to start regaining your strength.
It is also good news to know that you have gone from stage 2 to stage 1 with your lung cancer.
All this just shows you how intricate and complicated the human body is.
I do hope you get your surgery soon.
What do you mean by 4-16 and 4-29 with reference to your consultants.
I heard from Gill privately and I have to answer her today. She had told me she had given up posting on the thread. She thinks and I share her view that this forum has been spoilt with all the changes. I was posting on the thread to say I was giving up as well. I am much agrieved by this.
It will be 19 years in June since I was diagnosed. That is not bad since I was told initially that it was a poor prognosis!!!
Take care. Lots of love.
Sylvia xxxx
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Hello Paula,
I just wanted to thank for popping in to support Mary.
I was wondering how you are. How are things going in your daily life in the USA?
Thinking of you.
Sending love and best wishes.
Sylvia xxxx
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Hi Sylvia
I wrote on email since I hadn't seen anyone post here in quite a while. I have set the date for Surgery for May 7. The surgeon will remove my left lower lobe of lung, apparently that is standard when the cancer is contained there. I will be in Hospital for at least 4 days afterwards. I dont know what to expect after, but I will probly learn more next week.
The 2 dates were with different surgeons, my onco said to go with whoever called me first.
I see what you mean about the thread, I posted on April 8 and nobody responded for about 10 days, so I sent you and Gill an email. I would have included Paula but don't know her email. The thread looked pretty quiet, I poked around and didn't see much going on.
I'm very glad to hear from you, I was getting worried. I am Going to post this now before I lose it!
Love to you Sylvia, hope all is well!
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Hello Mary,
I had not heard from you so I decided to check the thread and saw that you posted on Tuesday April 23rd, just a couple of days ago.
I was glad to read that your surgery date has been set for May 7th and I shall be thinking of you on that day. We all know that waiting to find out about our treatment is very stressful and that it is a relief to get definite dates and definite decisions about the treatment.
I know that Gill, like me, does not like the new forum that bc.org has introduced and that we had both decided not to post any more because it was not the triple negative thread that I initiated in 2010 and that had become a very active and very warm and homely place for all of us to come together. I was really upset that they cut off the real number of views that had built up over all these years and nothing has been done to rectify that. It is nonsense to have the posts outnumbering the views. The views should be nine times the posts, judging by past experience.
I know that Gill is also very busy.
How are you feeling since the chemotherapy was stopped?
In order to get back on the forum I just Googled breastcancer.org and was quite surprised at everything that came up. I saw a few questions there that people had asked about breast cancer and what is happening now with treatment etc. I shall probably have a look at some of the answers later.
We seem now to be a group of four, you, Mary, Gill, Paula and I seem to be the surviving warriors.
Take care of yourself, Mary. Relax and know that we are with you and willing you through this!
Lots of love from this strange little island of ours which is nothing like the one that Raymond and I grew up in!
Sylvia xxxx
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Hello Mary, Gill and Paula,
I do not suppose you are keeping count of the comments and views, but I am. The comments are 16,658 (we called them posts). The views are really 102,537 and not the silly 11,393 coming up on the system.
I do not think our thread will ever get back to the haven it was for us.
Thinking of the three of you and hoping you are managing to get some daily enjoyment in this very strange world in which we are living. The news is horrific in the UK.
Love.
Sylvia xxxx
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Hello everyone,
I was just having a look at the thread to see if there was anymore news of Mary and was surprised to find that there had been 300 views in two days. If any new viewers have there story of triple negative breast cancer to relate, I would be interestd to hear from them. It would be beneficial for patients to know how the treatment differs from in the past. it would be useful to know about new drugs.
I am heading towards 19 years since I was diagnosed with triple negative breast cancer and in the UK with this kind of cancer everything seemed quite new.
Best wishes to all of you.
Sylvia xx
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Hi everyone
I will have my surgery on May 7th, and I have been trying to get things ready since I will be activity-restricted for a while. I won't deny I'm nervous about this surgery, I hope the Doc can do small incisions instead of one large incision on my side.
We are having the heavy Pollen season now, it's kind of miserable, breathing the fluffy green stuff and constantly cleaning it off seating areas, car etc. Ready for rain!
As to people viewing thread, I guess everyone is looking for something, but all the Threads look quiet to me.
Talk to you later.
Love Mary
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We're here for you, @maryna8 ! And yes, we're trying to get them more active again. Pollen season can be really miserable, although all the blossoms and green are so welcoming!
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Hi Mary-
I'll be thinking of you tomorrow as you have your surgery. I can imagine the apprehension and the anxiety it would provoke from this type of surgery. Many good thoughts and prayers will be sent your way. I'll also be thinking of the nurses and the doctors that will be taking care of you during and after the surgey. When you feel up to it let us know how things are going and how you are feeling.
Love - Paula
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Silvia & Gill -
Spring is in the air here. We have been getting a lot of rain and the spring flowers are in glorious bloom. I love it! The pollen in the air has been a bit hard to deal with but that is something that happens every year. The bluebirds built a nest in my birdhouse that hangs near my kitchen window and now the babies have flown the nest, the chickadees have taken advantage of the nest now. They are busy going in and out of the the bird house, I have no idea if the babies have hatched and I do not want to disturb their endeavors.
I havent felt very well the past couple of days… either I have a urinary tract infections or kidney stones again. Just not feeling well can bring about anxiety and worry about what is going on. Its a bad time to not feel well, I've got vegetables and flowers to plant and I'm not up to it.
I hope Mary will keep us informed with her recovery from her surgery.
Hope all is well in the UK… I know the world seems very concerning right now.
Love Paula
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Hello everyone,
I was just having a look at the thread to see if there was any news of our friend Mary. I have not heard from her and I was wondering how she got on when her surgery was due on May 7th. Gill sid something about this surgery having been postponed, or I have misunderstood something. Mary, if you are checking the thread please let us know what is happening to you. Gill, Paula and I are thinking of you..
I think Gill is not going to post on the thread. As for me,I do not quite know what to do. The thread meant so much to me and I let so many good and interesting people. it has left a big hole in my life.
I am not happy that the numbers of views were completely truncated from the thread. I still keep an eye on this.
The comments (posts) still seem accurate and they are 16,664.
The views are still wrong and the correct number is 149,976.
People are still looking at the thread and between April 25th and today May 14th, 1,049 people have looked at the thread.
If some of our regular thread people are still looking, and new people have joined, please post and voice whatever you have to say.
Many thanks Paula for your post and kind words to Mary. She needs all the support she can get.
As for Gill, I am sure we would all be glad to see you on here. Thank you for your email. I have had so much to do that I have not had time to reply.
Hello Debra (Inspiredbydolce), how are you getting on these days? I so enjoyed your posts.
Sending best wishes to all.
Sylvia xxxx
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Hello Mary, Gill and Paula,
I have written a private email to Mary to find out what is happening with her. This silence is unusual. I hope she will see this post and added to my private email I hope it will encourage her to get in touch. Gill is still not posting on the thread but I am sure if she hear from Mary she will let me know.
There are still plenty of people looking at the thread but no one has been inspired to post. It would be so interesting to hear from someone going through triple negative treatment right now and compare how much change there has been over the years. I am slowly creeping towards 19 years since diagnosis in June. I think it was June 20th but I would need to check earlier posts. It seems such a long time ago.
Love to all.
Sylvia xxxx
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