Calling all triple negative breast cancer patients in the UK
Comments
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Hello Rhonda,
Thank you for your post and the lovely photograph.
I do hope the drains have now come out. I do hope, as well, that the Herceptin and Perjeta chemotherapy treatment will go well. I do not know very much about the drug Perjeta. What is it targeting exactly? I know Herceptin is widely used and my friend and neighbour was on it to treat triple positive breast cancer.
When will you start Xeloda? Six months is a long time. Will you start it after you have finished the Herceptin and Perjeta or will you have it in combination? When do they want you to start radiation? Will all this be happening at the same time?
The radiotherapy should mop everything up.
It is good that you have with you your cousin from India and that you are able to go walking together when the weather permits.
Thinking of you and sending all my support as you go through all this.
Sylvia xxxx
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Hello Kath,
I hope you will now be able to settle down and live normally in between your three-monthly visits to the oncologist. It is good news that all your bloods and liver functions are normal and you should be happy about that. You must always concentrate on the good news. It will take a long time for your body to heal, so try to be patient.
You might like to try to get the Spring 2017 issue 31 copy of the free magazine from Breast Cancer Care or if not have a look at Vita online at vita.org.uk. You might also like to email at vita@breastcancercare.org.uk. You could tell them about your anxieties and fears. On their Inbox page in the magazine they say they want to hear from people.
I have just received my latest copy and I thought of you as I was reading the article on pages 12 and 13, under Healthy Living, entitled When worry gets out of control (Senior Clinical Nurse Specialist Rachel Rawson explains how to spot the signs of anxiety and explores some simple ways of coping). Have a look in particular at page 13, 9 ways to reduce anxiety. I shall just give you the headings and leave you to look at all this in more detail.
1. Talking
2. Breathing.
3. Keeping a diary.
4. Exercise.
5. Reassure yourself.
6. Yoga and mindfulness.
7. Big tasks.
8. Talking therapies.
9. Certain types of medication.
There is a phone number to call free the Breast Cancer Care helpline on 0808 800 6000. I do not know if you can do this outside of the UK.
I would urge everyone to read Vita. It is written in an easy, relaxing manner. There are good articles where Breast Cancer Cares experts answer readers' questions.
This should all be available online.
I hope this helps, Kath. Try to sit back and enjoy life.
Thinking of you and sending you all my support.
Sylvia xxxx
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Hello Mary,
I loved your most interesting photograph of nature coming to life. It can snow in April.
When I was 13 I went on a school trip to Paris at Easter time. It was cold and, yes, it snowed.
How are you getting on? I cannot believe another email came from Chris Woollams of Cancer Active. I am now working my way through that as well as the magazine What Doctors Don't Tell You and Vita magazine. In Vita you will be interested to know that on the page of book reviews, there is The Cancer Whisperer by Sophie Sabbage and a book entitled One Step at a Time: Getting through chemotherapy with breast cancer, compiled by Alison Bailey. Both are reviewed by Breast Cancer Nurses.
I hope to hear from you soon.
Love.
Sylvia xxxx
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Hello adagio,
I am just going to have a bit of a break and then I shall answer you post.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
Thank you for your kind words. It is always nice to hear from you and it does not always have to be about breast cancer. We need posts otherwise threads disappear. I am amazed at all the threads that keep being created and just disappear. A lot of these threads can be dealt with in the existing ones.
It must be an exciting time for you with the birth of the new baby. Is this your first grandchild? Olivia Annabelle is a lovely name. I am sure you will be very busy helping your daughter with the new baby.
Keep well, take care and very best wishes.
Sylvia xxxx
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Hi, Sylvia
I did see another post from Chris, this article on Vitamin D is from it and is very long; I posted it here in case anyone is interested. I'm sure everyone knows Vit. D is important, but this article has just a lot of information on the subject.
http://www.canceractive.com/cancer-active-page-lin...
I shall post more to you a bit later, I am supposed to go to physical therapy for my knee this morning, not expecting a whole lot out of that; do I sound defeatist?
Talk to you soon, Mary
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Hi All
Hope everyone is doing well.
2 years ago in May I had my mastectomy after enduring 8 session of chemo followed by 15 rounds of radiotherapy. For me the chemo was the worse part , I didn't work for a whole year and spent a lot of time in bed feeling really ill.
I wanted to share this photo with you. It's not glamorous or at all attractive, but it's not ment to be. I have just done a 3 mile run .... I never thought I would be well enough to do this again. I thought I would share this to give a bit of hope and encouragement to those who are still going through treatment.
Love Amanda
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Amanda - good for you to be back running - you look fabulous. Continue to take good care of yourself - it is so worth it
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Hi Amanda,
I just recently finished treatment, but it feels like it will be a long time before I regain my conditioning. Thanks so much for posting that picture! It does give me hope and encouragement.
Pam
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hi all
Got my genetic testing back today and no BRCA 1 or 2 or PABL thank goodness. Theydid note a faulty P10 gene which is currently of unknown significance with familial cancer and have recommended routine screening on a regular basis for myself and my girls which we will be doing anyway. How is everyone today. Winter is coming very quickly to Australia now and I have 5 weeks until my daughter gets married. I will make sure I post lots of pics
Cheers
Kath
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Hello Amanda
Thank you for your post and for the photograph. Congratulations on being nearly two years out and back to running.
I was very pleased that you did an outline of your treatment and how you experienced it. It was almost as if you had read my thoughts. I was thinking yesterday that it would be a good idea for all those active in our group and who have finished treatment, to write a short synopsis of their experiences and how they are experiencing life post treatment. I think this would be a great help and I am sure you are going to inspire and motivate others. Thank you for doing that.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello Kath,
You must be very relieved not to have BRCA1 or 2 faulty genes. Please look forward with optimism to your life post treatment.
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia,
I actually did purchase "Cancer Whisperer" on your recommendation, I have not yet read it; it's on my nightstand on a stack of books I have been working through. I have been so tired at night that I fall asleep quite quickly once in bed.
The latest post from Chris Woollams looks as if it is not too bad to get through, but I am not finished. I still have not read the article on Vaccines. I also have not read the one on Hyberbaric Oxygen, I would have to drive a ways to get to such a device, but I will read about as soon as I can. I posted the article on Vitamin D in case anyone is interested.
I did also receive the DVDs of all the speakers at the TTAC Symposium I attended in October '16, in case I haven't already told you that. I didn't watch all those yet either, and they are now on loan to my acupuncture doc, he was interested to see some of the speakers. By the time I watch it, it will probably all be new to me again!
My grocery cart is always full of produce too, a challenge for the check-out people who have to look for all the little codes. It has been quite easy for me to not eat pasta, bread, white potatoes or white rice on a regular basis. Probably because I am cooking only for myself. Over the last few years my ability to exercise has been hampered, and I have controlled my weight mainly by diet. Fresh vegetables, fruits, salmon, some chicken and venison are my staples. When I eat in restaurants I will go off the routine sometimes, it usually doesn't taste as good as I remember, and I am glad to eat my own cooking again. I am looking forward to eating on the cruise ship we are going to sail on, the restaurants are supposed to be "Primo" and so good that we will not want to eat onshore. Although we will do that too!
As far as the state of the world: one wonders if there is anyone that really understands what is going on with all these issues. Brexit just gets more muddied all the time, with Scotland wanting to "Stay" and now Gibraltar wanting to "Stay" with UK while also "Staying" with EU. Crazy, sometimes I think the opponents just want to keep things stirred up until something else big comes up and it is pushed to the back of the line. Here things stay roiled up, some want California to secede, and I have heard Hawaii as well. I don't think either thing will happen, not anytime soon anyway. As for all the Russia talk, I am sure we all spy on each other all the time, the problem here seems to be that our National Security people were spying on Russia and listening to conversations, but also listening to the Americans involved in the conversations, and then outing some of them in leaks. That is not legal, Americans have protections from that under our laws, from what I understand.
I saw your post to Amanda that included you saying you think it would be good for us to share our post-cancer journeys, I will think about it. Sometimes I think my journey might be discouraging to some!
My physical therapy was an evaluation yesterday, trying to see what is my problem, and what I have to work with. I was quite sore last night, better this morning, I have to do certain exercises twice a day now and go back twice a week for a month, then see what's what.
After about a 9-month drought, we are now having rain almost every day; Things have greened up and blossomed again after the last freeze, and now they say tomorrow night will be at the freezing temp again! It should be almost over for the freezes, I hope.
I will talk to you again soon, Sylvia,
Love, Mary
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Hi, Amanda,
Thanks for posting the pic of yourself, looking strong and radiant. Good for you that you are running marathons again, that must feel so awesome! I'm sure it will give people hope that are right now feeling as you did at one time.
Later, Mary
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Hey, Rhonda,
Ah, now I understand, the Herceptin/Perjeta is because of the H+ in lymph nodes. Somehow I missed that part of your story. I do know a couple of women who took the H, they said it was easier than the other chemos they had been given, I hope it will be easy and efficient for you!
Glad you had such a good visit with your friend from India and hope spring comes to you soon, you in the East had a worse winter than we did here.
Love, Mary
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Adagio,
Congratulations on your new grandchild, Olivia Annabelle! And how wonderful that your daughter could have a beautiful home birth with no drugs, that is fabulous. Your daughter is lucky too that she has you to help her now, just good news all around.
I am in Physical Therapy now to see if they can help my knee before my trip, my walking was already hampered by neuropathy, so I am hoping I can make some improvement. I will take Ibuprofen, but probably not anything stronger, most of the stronger drugs just constipate me! Which is also more miserable away from home.
Have fun with your little girl (s)!
Talk soon, Mary
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Hi Sylvia,
Perjeta is used for Her 2 positive which was found in my lymph node. That in conjunction with Herceptin is the gold standard for her 2 positive cancer.I started these two drugs a couple weeks before surgery.Radiatioj should be in a couple of weeks and Xeloda for triple negative is after radiation. Xeloda is a pill so it's a little easier to deal with. I feel 100 percent better since the drains are out and only have mild discomfort and numbness under my arm. I am going to have my daughter help me
Edit my profile-I don't know what I am doing wrong.
It is going to get warm next week so we will feel like spring is really here.I feel like the weather has been dreary and rainy.
Love
Rhonda
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Hi Sylvia and Mary,
Thank you for your kind words.
I was busy this fast few days. Everyday going out and living life as normal as possible for my DS.
Done with #8/12 yesterday. So far doing good. I had some mild numbness at the sole of my feet and fingertips the day before infusion but I don't have it now.
Amanda - You look great and thanks for posting. I feel inspired knowing I can feel normal again after all this treatment.
Best regards,
Lou
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Hello Mary, Rhonda and Lou,
Thank you for your posts. I have not had time to answer them, but I shall make it a priority tomorrow to do so. I have never known such a busy week here in Exmouth for a long time. I am hoping to have more time for myself tomorrow. I shall try to get to all of you, as well as going through the latest email from Cancer Active Chris Woollams. His emails have been coming thick and fast these past few weeks.
Thinking of the three of you and everyone on the thread.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia, Mary and all
I finally managed to come here and say hello to all dear friends here.
Three weeks have past since the beginning of our new year and It's been only a few days that we came back to our normal lives. We paid lots of visits to friends and relatives and took a trip to the North. Although the spring had started we still had lots of snow and cold weather. But now we are enjoying all the beauties of the refreshing season.
I've fallen behind a lot of posts but from what I understood Mary is going to take a trip to Europe. It sounds amazing. Mary I hope your knee gets better fast and you have your best trip ever.
adagia, congradulations on your grandchild. She must be lovely. I really look forward to being a grandma one day.
Amanda, you look great. I really loved your picture. It's full of liveliness and strenghts.
Sylvia, my days are good but I always have some strange pains that I really hope leave me alone. Thanks for being here and all the support and help.
Love
Hanieh
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Hello Mary,
I have just printed off the April 3rd 2017 email from Chris Woollams, but I have not had time to read it. Not many people on the thread make any comments about these emails, so I do not know how many are reading them. I happen to think it is one of the best sources of information. I do wonder about the safety of vaccines, past and present.
As for vitamin D, I think we should all know the importance of it by now.
I am concerned that we might all be suffering from over-information and ending up with everything in a muddle.
I think we just have to do our best with our everyday lifestyle and hope for the best. Like you, my main shopping is fruit and vegetables. My favourite meal is pan-fried wild salmon and a mixture of vegetables, concentrating on those of the cabbage family with a few carrots. As for carbohydrates, I think we should just have a few of the carbohydrate vegetables. I do not eat any white rice, white bread or white pasta. I do not have to have potatoes either.
As for exercise, I believe in just a walk. Of course, I do some gardening. Housework counts as exercise.
I think avoiding stress is very important.
As for politics, I think the world is upside down. I am not convinced we are going to exit the EU. People voted mainly to exit because of the free movement of people into our country. I think our Prime Minister is going to fail to deliver on this. It should have been implemented last June 24th the day after Brexit won the referendum. We are losing our identity in this country.
I think that we are now seeing a repeat of the Iraq fiasco.
I think that it would be a good idea for patients having finished treatment to write up a short synopsis of their experience. It does not have to be detailed. It could show that whatever the setbacks along the way, we do survive and we do get back to a normal life. We need to motivate and inspire, and not frighten, new patients.
It is true that Spring is now taking hold. In the grounds here plants seem to be blooming overnight. It all makes you feel so much better.
That is all for now.
Love.
Sylvia xxxx
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Hello Rhonda,
I was very interested in what you said about Perjeta. I now understand why you are having that and Herceptin. Are you having any nasty side effects from them? It is interesting that a lymph node was found to be HER2+. I wonder if it started off as that? I remember my oncologist talking about how these cells mutate all the time and that a triple negative receptor status did necessarily not start off as such.
I do hope all goes well with radiotherapy in a couple of weeks time.
When you start Xeloda for your triple negative, after radiotherapy, will you stop the Perjeta and Herceptin?
I was glad to know that the drains have been removed and that you are feeling better. Keep an eye on the numbness and get some therapy if you feel you need it. Manual lymph massage is what you need.
It would be very useful if you could put all the details on your profile. You need to put the mastectomy, how many lymph nodes were removed, and how many were positive. Put down the Perjeta and Herceptin for a HER2+ lymph node, the forthcoming radiotherapy and the oral Xeloda for the triple negative.
I am thinking of you and sending best wishes.
Sylvia xxxx
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Hello Lou,
I was glad to know you are keeping busy and living your life as normally as possible. That is the way to be coping with everything.
It is good that you have now done 8 out of 12 treatments and that you are doing well.
Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
It was nice to see you back on the thread.
It was good to know that you have been keeping busy for the past three weeks doing enjoyable things.
Thank you for your kind words. They mean a lot. I am glad that you are getting on with your life and appreciating the good things that each day brings. I hope all is well with your husband and daughter and that you are happy with your teaching.
Love.
Sylvia xxxx
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Hello everyone,
I just wanted to wish all of you a happy and relaxing weekend.
The school holidays have begun here in England, the weather is fine and people are flocking here to the seaside. Yesterday the seafront was really busy and there were queues for ice cream everywhere.
Thinking of you all.
Sylvia xxxx
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Hi, Sylvia, Hanieh, and all,
I will be away for a family wedding for a couple of days, and will write more when I get back. I don't know what to think about what's going on in the Middle East. In one simple word, scary!
Have a good weekend!
Love, Mary
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Hi to all.. I wanted to say hi to the new here and to my old friends too.
So far so good 4 me. I had negative results for all genes. But my onco-geneticist wants to dig deeper in my DNA and my family''s.
Have been through pains here and there.. worrying here and there .. my doc now recommend's councelling. . Which I am happy to do. It can only help!
During one of routine MRI 2 months ago they found a suspecious enhancement <6mm that couldn't be seen in US nor in mammogram. They told me to wait 3 months and have another MRI.
My appointment for another MRI is for 18-19 April. Will keep you updated.
Apart from this.. I am feeling fine and healthy.
Excelwlt news for the new grandma.. so happy for Mary to visit Europe.. many of you are either post surgery or treatment .. congrats you made it.. hi5!
Keep up the good spirit and hugs and kisses to all.
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Hello 4 everstrong,
It was so nice to hear from you.
I was glad to know that you do not have the faulty genes and it will be interesting for you to have more research done on your background history and DNA. Keep us informed.
I do hope you will benefit from some counselling. It is always good to be able to speak about any concerns you have. There is nothing worse than keeping all your concerns bottled up inside of you,
Please let us know how you get on with your MRI scan and we are all hoping for good news for you.
It is good that you are feeling fine and healthy.
Enjoy the Spring season.
Fond thoughts,
Sylvia xxxx.
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hi all Get cold here and My bones are aching and sore! The creepy crawly feeling in my back and hip continue but I have spoken to others Who have had the same feeling even years after chemo and get by with skin brushing! Keep think the worst being the typical nurse but I am try to keep myself busy and think about other things. 3 weeks until my daughter gets married and I am
Back at work with a vengeance so plenty to do! Hope everyone is well
Cheers Kath
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Hi, Sylvia
I had a good weekend, a friend and I attended a family wedding about 3 hours from us. Other than staying in the wrong hotel, (but very nice), and having a flat tire at one point, all was very enjoyable.
The world situation is seeming very chaotic to me too, but I think that's partly because of the glut of information we receive on a daily basis. If we are open to it, we are sent so many messages on so many topics that it is almost impossible to know what to believe, what is important and what isn't. Right now the news is quite alarming, as usual.
I have finished with Chris Woollams' last post, half of it was advertising for his supplement store and personal prescriptions. I'm sure the personal prescription program is very interesting, I would imagine there is a long wait for his services!
I have cancelled my Physical Therapy; after 2 sessions of the exercises I was in a lot of pain, so I called the doc's office and said "no more!" I am now scheduled for a shot in my knee on April 20th. I told my acupuncture doc, he agrees that will be the best thing to do. In hindsight, I think I should have stuck to the simple daily movements I was doing and not tried to get more ambitious. Perhaps I wouldn't be in this situation, but who knows. I am told it is an osteoarthritis flare-up.
My asparagus bed is producing, last night I had a piece of wild cod, and fresh asparagus. The bed could use more rain to really get going.
I have to go out early this morning, I will talk to you again soon.
Love, Mary
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