Calling all triple negative breast cancer patients in the UK
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Hello Barbed,
Thank you for your latest post. What you have been through is mind boggling. My heart goes out to you and I am sure I speak for everyone on the thread.
I shall write in more detail tomorrow, as I feel tired after another busy day and really shocking dispiriting weather.
I have picked up on what you said about all the chemotherapy drugs and those different regimens CMF and FEC.
I do not see too many CMFs now when I read posts. M = methotrexate and it does not seem to be used as much, but I could be wrong.
FEC is more common and still used a lot I think, though I have never quite understood why some people get just EC (which is what I had) and some get the additional F (fluorouracil). Just looking at that you could have M and F since you have not had these drugs. I suppose it depends on whether they are considered useful.
E = epirubicin is the same kind of chemotherapy drug as A = doxorubicin. The A is used after the name of the place Adriatic (and thus Adriamycin) where it was discovered (my oncologist told me that epirubicin (Ellence) was less harmful than doxorubicin). I was told that the taxanes were very effective against TNBC and that docetaxel (Taxotere) was less harmful than paclitaxel (Taxol).
Keep on fighting your case, more tomorrow.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
I finished to AC and I am quite tired.I have managed to
Walk when the weather is mil but the past two days have been cold,windy and snowy.I start the Taxol and Carboplatin November 30th. I have been napping more
Since Wednesday.
Rhond
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HI, Sylvia,
There was a post sent out from Chris Woollams on Nov. 20. It is a really good one and I'm glad you want to get back to seeing it.
One of the links I posted is for the Symposium I attended in Dallas TX, I am so happy that Chris referenced it. I think you would find something you would like if you watched it. Watching it all would be overwhelming, and there's really no way to do that, since the speakers overlap. I am so glad, I would have liked to share the link I have, but was not able to; the link I have was only for people who attended and it will only respond to my email address. They live-streamed it while it was going on, now they are reaching out further with this.
Talk to you soon,
Love, Mary
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Hello lilyp6 (Pam)
I was glad to know that you are still reading the thread and still managing to work through chemotherapy. I was glad to know, as well, that you have done well on chemotherapy. The chemotherapy treatment is accumulative so I am not surprised that you feel tired after your last infusion. You need to give yourself plenty of time to recover and your immune system to build itself up again.
I hope the clot from the AC treatment will heal quickly.
I do hope all will go well with your surgery on December 2nd.
It may be just as well to have a bit of time between your bilateral mastectomy and reconstruction. Surgery is a big shock to the body and you do need time to recover.
I do hope you will be told soon whether you need to finish off your treatment, with radiotherapy, as is usual to mop up any stray cells. Again, give yourself time to recover from all this.
I did not have reconstruction. I just never considered it. I was told that breast surgery is quite straightforward but that adding reconstruction to it makes it much longer surgery and more complicated.
I was glad you managed to have a break with your husband. It probably did you a lot of good.
Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia and all
After all the air pollution , we finally had our first light fall snow and we are extremely happy. This my daughter in our apartment yard .
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Hello Gina,
I was glad to know that you are doing fine on your chemotherapy journey. You are doing the right things and I do hope all will be well when you are due for your next chemotherapy session.
I was glad to know that you are dealing with the inevitable hair loss in a sensible way. That is the only way to cope.
We shall all be thinking of you on Friday November 25th when you are due for your next three-weekly cycle.
Try to read all of the posts if you can so that you know what everyone is doing and how they are feeling.
We all try to catch up when we can, but it is important to take breaks if we feel we need it. We have to live our lives as normally as possible and not define ourselves by our cancers.
Keep positive.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your posts. I am going to look at the links today.
I am still trying to get back on Chris Woollams' email and Raymond has tried on his email address as well. Have you any ideas how I can do it? I have signed up but nothing is happening.
I am always happy to hear from you.
Fond thoughts.
Sylvia xxxx
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Hello Barbed,
As far as your chemotherapy drugs go, I do hope the 'experts' will sort it out and that you will get treatment for whatever you have. I pointed them out in my previous post, so it appears you still have options. There is also carboplatin which seems to be used a lot now.
It is good to know that you are not BRCA 1 or 2.
My understanding is that with blood tests you do get variations with different labs.
I am not a doctor but if you are suffering from terrible fatigue and weight loss without trying, I would think that you would need to get that urgently checked out. There could be many explanations. Those two things are also symptoms of diabetes 2.
you are certainly doing the right things in not drinking alcohol and eating healthily. You need to find out why you are feeling tired and washed out.
I was interested to know that you say you smell. I remember my breast cancer consultant telling me that tumours that are not treated can fungate and start to smell. An alternative doctor also told me this when I was first diagnosed, so if that were me I would want to get a good check up. Tumours in the breast, so I was told, can grow, fungate, smell and burst through the skin. I do not know about elsewhere in the body.
I am convinced that the NHS is struggling and that each patient will now have to fight their own corner to get treated speedily. The only other alternative is to go privately if you can afford it.
Thinking of you and hope to hear from you with good news.
Fond thoughts.
Sylvia xxxx
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Yay!
After my blood test, several phone calls (although the BCNs never got back), lots of campaigning since I had problem barium swallow, letter to oncologist from GP, my letter to GP - suddenly need to be seen urgently.
Appointment in oncology tomorrow.
*Shouldn't have to be like this.*
Thanks for all your support - Sylvia - I would have probably waited until next month if you hadn't of said to push for something better.
xx
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Hi, Barb,
Yay for you, I am glad you took Sylvia's advice, you did have to put a lot of effort into being seen quickly. So glad it paid off.
I will be thinking of you tomorrow, my heart goes out to you, you have dealt with so much already. You are a very strong woman!
Talk soon, Mary
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Hi, Hanieh,
The sinus problems are chronic with me, and I am pretty sure I have developed allergies to a lot of trees and pollen, probably dust too. I am using self-diagnosis here, haven't been tested. I also seem to be very sensitive to weather changes, cold and warm fronts moving in and out. We had a few cold days, now it is going to warm for a few days and then turn cold again, so I am pretty sure of what will happen to me! Sorry you have the bad air pollution, that is hard to escape from, and definitely can cause problems.
I am also sorry your daughter hasn't recovered yet, does she have the flu? It is going around here too.
It is 2 years in February 2016 since my husband died, hard to believe. I find myself having a hard time letting go of some of the things that were his, and yet at the same time wanting to release it all and turn the page to the next chapter of my life. I am going to Aruba in a couple of weeks, looking forward to a week in the sunshine on the beach. Sometimes I don't want to come home when it's time to leave, when I'm gone I feel like myself without the work and the worries and the cancer fears.
I like the pics of your daughter in the snow, we haven't had any of that yet. I hope we do have some snow this winter, I am in the minority to wish for that!
I am sending prayer and positive energy your way!
And I will talk to you again soon,
Love, Mary
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Hi, Sylvia,
http://www.canceractive.com/cancer-active-page-link.aspx?n=3594
I posted another link to see if you can sign up using it.
I think if you click on the link above and go to the page, there will be ways to sign up. If you scroll down there is a column on the right side of page where you can sign up for all kinds of things, including his newsletter, I think. There is also a pink bubble that pops up saying you can sign up by putting your email there. These areas are on most of the links.
Hope this helps.
Mary
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Hello Barbed,
Congratulations on that achievement. I am so proud of you. It just shows the squeaky wheel gets the oil! I think it is good therapy for us cancer patients, in particular, to kick butt in a while!
We shall all be thinking of you tomorrow when you see your oncologist and hoping for good news. Don not be afraid to speak up in your defence. This is your body and nobody else's.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your help. I am going to try that.
I have just been doing some more proof reading of my cousin's book. It is very tiring.
Talk to you soon.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
I work with agencies to help students adjust to campus life. Many of our students are from Europe and other countries. As a result they can be homesick, and lack basic things like transportation, healthcare. Many are not familiar with the college process of getting housing. We work with the college and their recommended agencies to help them with their needs. As a result I meet very interesting and varied folks. All nationalities. What I hate is the fear and uncertainty they now have due to things promised during this election process. So much venom towards immigrants, Muslims etc and those groups are feeling vulnerable. We had to take some crash courses in the immigration processes so we could help our students. A lot of our professors are nervous as well.
How things have changed, we were a walk up service. Several tables set up in common areas. Now you have to take a number. We are bombarded with requests. A month ago, I had 10 requests for assistance. Yesterday we had 300. Most were how to apply for citizenship, how to make sure their green card is up to date, papers etc. We are now interviewing for more staff.
Hopefully time will help. Nothing I see in the media is calming.
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Hi, Valstim,
Sorry you are having such a hard time since the election, especially with your foreign and/or repatriated students. I think the talk before the election referred to illegal immigration? If the students are here legally, why are they so worried? I can't imagine any scenario where anyone would rush in and remove legally-present non-citizens.
I also think our media has blown up a lot of the chatter, if we learned anything about most of our media in this election, it is how wrong they were about everything. And I can see how easily students who are not avid followers of the political process could be frightened, by just hearing the media's talking points of the day repeated over and over ad infinitum.
It sounds like you are definitely distracted from your cancer worries, that is a good thing anyway. Hope you are continuing to improve every day, you must be feeling much better to be doing this work. Good luck, I do hope things calm down, it seems the universities are hotbeds of unrest. The nearest large university to me is an hour away, and I haven't heard of much going on there.
How was the craft show? Or is that still upcoming?
Talk to you soon,
Mary
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Hi
Taxol no 5 tomorrow and then heading on the plane Sydney to watch my son graduate as a fireman! Can't wait have s runny nose and tickle cough came on last night which is a bit of a worry but hopefully all ok and should be able to have chemo. Mood still very down and teary so I'm really looking forward to seeing my son! So bloody scared all the time! Does this feeling ever ease?
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Hello Kath,
I hope all goes well with your Taxol treatment tomorrow and that you have an enjoyable time with your son. Try to switch off cancer during that time and let your son enjoy his day.
My message to you is the same. Get on with your treatment and deal with any problem that comes up during it. What other choice do you have? Tell yourself and will yourself to get through it. Are you getting some support from friends and family etc.?
As I have also said before, concentrate on keeping hydrated, getting plenty of rest, being strong and positive, eating healthily, having some leisurely walks and count your blessings.
I think the worst illness a person can have is the various forms of dementia or illnesses such as Parkinson's disease and motor neuron disease.
Wishing you well.
Fond thoughts.
Sylvia xxxx
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thanks Sylvia a u are right. I need to enjoy the moment and be thankful for my early diagnosis! Really looking forward to seeing my son and grandsons and so far taxol hasn't been too bad. Just at muscle ache and tiredness. Think positive thoughts
Chwer
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Hello Sylvia,
Thanks for your wonderful support, as always. I am getting the results of my fourth CBC with platelet count plus some other blood tests today, to see if I can do the 2nd chemo tomorrow. Thinking of you and the rest of the wonderful ladies and gents on this thread. I wish you all the best.
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Hello everyone,
I am just popping in to wish all our American friends a very Happy Thanksgiving. I hope you all have a lovely time. It would be nice to have this day in the UK. We are slow to progress but we do have Black Friday. It seems to have been going on for days now.
Gina, thank you for your kind words and I do hope all goes well with your chemotherapy tomorrow.
Hello Val,
Thank you for your post. It sounds as though you are doing a really good job at your public university. I think students need a lot of support as they embark on this stage of their life.
I hope you are keeping well.
Best wishes to all.
Sylvia xxxx
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Happy Thanksgiving to all!
I went to church last night, there was a very nice homily about giving thanks for our blessings, and the priest even suggested writing them down, especially if you think you don't have many. I am showered with blessings, though sometimes I don't feel that way, and I thank God for all of them. I am very thankful for all of you here, this place was a refuge in a very dark time; and it continues to be a place where I can come and visit with friends, and sometimes I can cry on your shoulder. I hope I offer support to you at times, and I am grateful for the support I am offered. I enjoy talking about life and life's events at other times, to you wonderful people from all over the world.
Thank you my friends!
Love, Mary
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To all:
Just a reminder: This is starting tomorrow, if anyone is interested in seeing some or all of it. It is the Ultimate Symposium, 3 days of interesting speakers, most of it cancer-related.
https://go.thetruthaboutcancer.com/uls/?gl=582843138&a_aid=55b1c500a3d65&a_bid=60c3cabd
There is no cost to see this, just requires registration.
Mary
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Happy Thanksgiving!
And a massive thank you for all your support.
Barbed
(Onc appointment went okay - booked for CTs.)
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Happy Thanksgiving my lovely friends. Hope you all had a fab day
Amanda x0 -
Happy Thanksgiving to all of you!
I ended up in the emergency room with a fever,they are giving me IV fluids and antibiotics-they took lots of tests.
Not how I wanted to spend my holiday!
-I have to be admitted
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Rhonda,
I'm so sorry to hear that. I hope you get better soon and please update us on your condition later when you're ok.
Rest well, my prayers are with you.
Gina
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Hello Maryna8,
I just saw the link to the Ultimate Symposium you posted. I haven't browsed thru it yet but it sure is very interesting
I have a suggestion for you, if you dont mind. Why don't you make a separate thread for this link so that others here on BCO can check it out. Since I think you're the original source of this nice link, it is just appropriate that you should get credited for it. You are our "encyclopedia" when it comes to topics like this, that is my personal opinion. You are so generous in sharing information, in fact, i get eyestrain reading your long interesting novel-like posts about symposiums and events. LOL. I love them. That's true. You are an angel just like Sylvia!
I wanted to take the initiative to make a new thread for your link but, respectfully, i think you should do it. It would be a big help and a whole lot of info for all BCO members!
Best Wishes!
Gina
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Hi Gina,
I white blood cell count is really low,so they are Giving me fluids and antibiotics.My chest X-ray was clear,so they are checking for other types of infection.They did give me another shot to increase my blood counts.Hemoglobin and platelets are good.Thank you for the prayers.
Rhond
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