Calling all triple negative breast cancer patients in the UK
Comments
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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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