Calling all triple negative breast cancer patients in the UK
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Hello Mumtobe
Thank you for your post. I was interested to know that you know another Canadian lady on another TN thread and that she had weekly doses of Taxol with no hair loss. I wonder how much weaker the dose is that it does not cause hair loss. Let us hope this happens for you.
I was glad to know that you had an ECG before surgery and then after chemotherapy and that all was normal. I think they would have said something if there had been anything abnormal.
I do hope everything will go well with your chemotherapy. If it is of any use, I was told to make sure that I had something to eat for breakfast before going for chemotherapy, and not to go on an empty stomach. I was told that a boiled egg and some toast would be good.
Wishing you well.
Sylvia xxxx
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Mumtobe - I had 4 treatments of taxotere, three weeks apart . . . I'm not sure how similar taxotere and taxol are - but I had "minimal" sickness . . . the first couple of days were a bit rough, but I think that was more due to the steroid dosages than the taxotere . . . It's 6 weeks since my last dose and my hair is now "visible" - although it is white and whispy - probably take a couple of months to come back in fully . . . GOOD LUCK TO YOU!!!! Wishing for you NO or LIMITED side effects!
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Hello to all regular posters.
I thought you would like to know that I had a PM from Dulcie. She is in hospital and I thought it would be nice if you posted words of support and comfort to her during this difficult time. I am sure we all miss her on the thread.
Thinking of you all.
Sylvia xxxx
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Adagio:
I just read some posts regarding your consideration of chemo. Especially, if your medical team is mentioning dose dense chemo, then they clearly see a reason for it, as dose dense is considered a breakthrough to traditional 3-week treatment. I hope you do get the chemotherapy, and you can rebuild your body with healthy eating and exercise, during and after chemo.
With TNBC, studies show researchers/doctors that after 5 years without a recurrence, that risk of a recurrence is dramatically (out of all breast cancers) drops the largest amount down in recurrence risk. So remember, that many TNBC Survivors will not have to face a recurrence.
While we should always know both sides of the equation, I think the focus should be more on pointing out the positives, rather than the negatives. And with TNBC you can have an excellent prognosis. Many doctors on the internet remind us TNBC Survivors all the time that the majority go on to enjoy a full normal life.
Take care and let us know your update!
Have a great day,
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Adagio:
Also, I recommend getting your Vitamin D levels checked. Vitamin D deficiency has been linked to breast cancers and in particular to TNBC. I had mine checked and got the results the very next day!
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Hello Adagio
I hope you had a good holiday weekend and that you have come back ready to face whatever you have to face.
Because there have been quite a lot of posts since your pre-holiday weekend post, and my reply to it, I thought I would let you know once again that my reply is on page 81, November 9th.
I would also like to add my voice to InspiredbyDolce and to say that I agree with what she said. Focus on all the positive aspects of TNBC and ignore all negative comments. It is good to know that after five years survival we have the best survival rate of all. We have to help this with good nutrition and regular exercise.
I think you were supposed to be starting chemotherapy today. If you have, I hope all goes well.
Best wishes
Sylvia xxxx
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Hello InspiredbyDolce
Thank you for all your information and your encouragement to Adagio.
I hoope all is well with you.
Best wishes.
Sylvia xxxx
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InspiredbyDolce & Sylvia,
Thank you for those words of positivity & encouragement. I needed them this morning. Heading in for my 1st dose of Taxol this afternoon. Have such mixed emotions about it. In one sense I'm thinking that I feel safe in the nook of treatment and am glad I am still getting drugs into me but in another sense I'm thinking I have 12 weeks of this ahead of me, yikes, when will it end. As my wonderful husband says to me, take each week at a time, after today I only have 11 weeks left. Positive attitude and faith in wonderful, loving Jesus is key!!
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Hello Mumtobe
Thank you for your post. I hope all has gone well with your first Taxol treatment this afternoon.
Try to relax this evening and tell yourself that is one treatment behind you. Try to enjoy the rest of the days to your next treatment and get through by saying that each week there are six days when you do not have treatment. You will find that the weeks soon go by. Your husband is right and you have to take one week at a time.
If you do have any side effects, please post as I am sure we shall have tips to help you get by. We shall all be interested in how you get on, as you are the first person on the thread with whom we are going through the weekly chemotherapy treatment. The others that we have followed went through chemotherapy on a three-week cycle.
Hang in there. Fond thoughts.
Sylvia xxxx
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Hello everyone.
I have just been reading some of the latest information in the new format of the new magazine entitled What Doctors Don't Tell You that started in September this year. I read that first issue with great interest, somehow missed October and am now reading November's issue. If you are interested in having a look on line the link is:
Best wishes.
Sylvia
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Good morning ladies, although not from the uk, a TNBC sister I am, I have been reading through your thread and find it most interesting and thought provoking. Lots of good information here. I am just over a year now with NED..yeah me. Hope you all dont mind if a canadian gal crashes your thread
Have a great day
Kymn
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Welcome Kymn
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Thanks Bernie, looks like we hang at all the cool threads dont we
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HI,
Welcome Kym .I personally have learnt so much on this thread and it's a place where it's ok to be me and have support and reassurance.
Dulcie. We will think of you in our meditation group and send you our healing light and love.
MumtoBe, great to have the first one over. Hope that you enjoy some time with your beautiful daughter.
BernieEllen, I am thinking of contacting the ombudsman Emily O Reilly about the whole invalidity issue. Apparently cancer is no longer classed as an illness that can be debilitating. We would all love to be fit again and capable of returning to our jobs but unfortunately some of us suffer long lasting affects of the treatment.
Just back from Galway and the launch of STSA. We got lost and missed the first bit but it was wonderful to sing with all the other survivors, including a beautiful little girl Grace. It featured on the nine o clock news. There was champagne after donated by a local business. There is a group of breast cancer support centres in the UK who are interested in joining us.
Our main performance is to be on 31ST March.
Very tired and sore but inspired and happy.
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Good morning, Linali. good idea about the ombudsman. Let me know what you are doing, maybe we could get together.
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John invited his mother over for dinner. During the course of the meal, his mother couldn't help but noticing how beautiful John's room-mate was. She had long been suspicious of a relationship between John and his room-mate, and this had only made her more curious.
Over the course of the evening, while watching the two interact, she started to wonder if there was more between John and his room-mate than met the eye. Reading his mom's thoughts, John volunteered, "I know what you must be thinking, but I assure you Julie and I are just room-mates."
About a week later, Julie came to John saying, "Ever since your mother came to dinner, I've been unable to find the silver gravy ladle. You don't suppose she took it, do you?"
John said, "Well, I doubt it, but I'll write her a letter just to be sure."
So he sat down and wrote: "Dear Mother, I'm not saying that you 'did' take the gravy ladle from my house, I'm not saying that you 'did not' take the gravy ladle but the fact remains that one has been missing ever since you were here for dinner."Several days later, John received a letter from his mother which read:
"Dear Son, I'm not saying that you 'do' sleep with Julie, and I'm not saying that you 'do not' sleep with Julie. But the fact remains that if she was sleeping in her own bed, she would have found the gravy ladle by now. Love, Mom."0 -
Thanks Sylvia.
Well had my first treatment yesterday and don't feel like I had chemo at all. My only side effects are the blasted steroids. Couldn't sleep last night! Good news is that I don't have to take any steroids outside of day of treatment unlike the AC, it was the sensation from the steroids that really affected me. Will keep ye posted on the remaining treatments.
Carol x
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Hi ladies:
Just stopping in for quick hello and to share this information with you:
You can track your food and exercise daily with: www.myfitnesspal.com
You can look up nutritional information with: http://nutritiondata.self.com
The nice thing about myfitnesspal.com is it will keep track of what you want it to, i.e.: fat,protein,carb,sodium, etc. You will have a drop down list to select items. When you do something more complicated like a smoothie with 6 ingredients, it will save your items, so the next time, you just have to click it, instead of trying to build it like the first time.
For the nutritional site, it's also nice because it gives you info like inflammation factor and glycemic index factor with each food item.
But the fitness pal helps with keeping a running tab on what you consume during the day. It is a little work the first week or so while you are first getting used to it and building up some specialty food items, but it has a very robust database. Even includes name brand foods, food like Trader Joe's brand, and even has restaurant brands and their items in the database.
Hope you all enjoy it and find this helpful.
Have a great day everyone - hugs to all my support Sisters out here!
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Hello Kymn
Thank you for your post.
You are very welcome to post here and I was glad to know that you have been reading the thread and that you have found it interesting and thought provoking. I am glad, as well, that you have found good information.
It is good to know that you are doing well after treatment and we all hope that continues.
I was interested to read your details and to know that you were grade 2, as most TNBCs are grade 3.
Looking at your details, am I right in assuming that you did not have surgery or radiotherapy? Does this mean that the chemotherapy took care of everything?
All Canadian gals are welcome here and I am sure you and they will make an excellent contribution. If there is anything in particular you would like to know, please do not hesitate to ask.
Wishing you all the very best.
Sylvia xxxx
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Hello linali
I have just read your latest post and wanted to say thank you for your kind words to Dulcie. She really needs our support right now.
I cannot believe that the bureaucrats are saying that cancer is no longer classed as an illness that can be classed as debilitating. Cancer must be one of the most debilitating illnesses that a person can have and I doubt that there are many patients who are the same as before treatment. I do hope you will fight to get your invalidity. Do everything possible in your power. I wonder whether the bureaucrats making these decisions have ever been through cancer themselves and if not perhaps they would like to experience a dose of chemotherapy or radiotherapy so that they have personal experience before making decisions that affect peoples whole life.
I was glad to know that you enjoyed your trip to Galway and the launch of STSA. It looks as though the whole thing may be taking off.
Thinking of you and wishing you well.
Sylvia xxxx
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Hello BernieEllen
Thank you for your posts.
I am sure that if you and linali get together over this invalidity issue, you will be a powerful force with which to reckon. Good luck.
I did like the joke and I know that for anyone having a bad day, your jokes must give them a moment of relief and laughter.
I was looking in the bookshop in Exeter yesterday and I always look at the section on breast cancer. There do not seem to be many new books coming out. The same books seem to be there each week. There are the books by Professor Jane Plant, which I found very interesting when first diagnosed, and the book we discussed sometime ago by David Servan-Schreiber, Anticancer, a new way of life. I found one that I had not read. It is entitled Thrive, The Bah! Guide to Wellness After cancer, by Stephanie Buckland and it is 2012. It is a follow up to her other book, Say Bah! To cancer. On the internet I saw that the woman who made the video recently specifically about TNBC now has a book out. It is entitled Surviving Triple Negative Breast cancer by Patricia Prijatel. It was published November 2012. I shall probably read these two books in the near future.
If you want a book to relax to, there is none better than From Ration Book to ebook, The Life and Times of the Post-War Baby Boomers, by Paul Feeney. It is a non-fiction book and traces the life and times of those born between 1946 and 1952.
I hope you have a good weekend.
Best wishes.
Sylvia xxxx
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Hello Mumtobe (Carol)
Thank you for letting us know how you feel after your first treatment and it is good news to know that you do not feel as if you have had chemotherapy. Let us hope it stays like this. If weekly treatments are easier on the body, and easier for the patient to tolerate, that will take some of the fear and dread out of those having to go through it. It is also good news that you do not have to take any other medication as you do, for the first few days, when you have treatment every three weeks.
I do hope you have good sleep for the rest of the week. I did not experience this problem with steroids, so it is hard for me to understand. I have a cousin who is on them quite a lot for COPD and she tells me that it really energises her. I know also from FernMF that she had a bad time with steroids. The usual steroid here in the UK when going through chemotherapy seems to be dexamethasone and I know it affected FernMF and that she switched to prednisone and she was then fine.
I hope you have a good weekend and that you enjoy your time with your family and baby Emma.
Sending fond thoughts your way.
Sylvia xxxx
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Hello InspiredbyDolce (Debra)
Thank you for your post and for all the information. I am sure that everyone on the thread will find this information useful.
Do you use these sites to check your food intake and exercise on a daily basis?
Best wishes to you from all of us, wherever we are.
You seem to be doing well. Keep it up!
Sylvia xxxx
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Hello everyone
It has been a busy time on the thread with lots of useful information being posted.
Once again, it is Friday and I just want to wish all of you a relaxing weekend. If there is anything in particular that you want to discuss, you know you only have to say.
Thinking of you all.
Best wishes.
Sylvia
To Mumtobe. I was wondering whether you were offered Neulasta or Neupogen after your chemotherapy? I was never offered it, but many seem to have it, especially in the US. It is an injection after chemotherapy to avoid low blood counts.
To BuddhaWolf. I hope all is well with you in London and that you are still finding time to view.
To sam52, Michael and Maria_Malta. Thinking of you and hoping all is well.
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Hi Sylvia,
Yes, I just started with myfitnesspal.com this week! It take a little bit of time at first, but you can save your 'meals' and then just click the box the next time. It lets users add to the database, so you can share you information if you want. For instance, every day I have this smoothie: blueberry/kale/blackberry/banana/2 tbsp ground flax seed powder/splash of water/vitamin D3 drops .... if I wanted I could add it to the database and call it: Homemade Blueberry/Kale Smoothie
Sylvia, will you please tell us what supplements you are taking?
And is anyone out here taking any calcium/bone supplements? I don't eat/drink dairy/milk (other than eggs) so was looking to see what people are doing for supplements.
Have a great Friday everyone .... I hope everyone is feeling good today and getting a little bit of sunshine on their faces!
- smoothie recipe
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Have a good weekend everyone
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Hello InspiredbyDolce
Thank you for your post. What you are doing on myfitnesspal.com sounds really fascinating. I do like the sound of your smoothie, as it has everything in it that I think we should all be taking for health reasons and hopefully as a breast cancer preventive.
I have a bowl of fresh fruit every morning that includes blueberries, blackberries, bananas, raspberries and black or red grapes. I try to buy organic if it is available. I tend to grind up my flaxseeds and have them with soy yoghurt, just natural. The brand name is Sojade and it is very creamy but made only from soy, with no sugar. I like the idea of giving your smoothie a name. You could end up with a best selling cookery book!
I tend to make very simple meals and use my imagination when making them.
I was most interested to know that you put vitamin D3 drops in your smoothie. I have not seen them here in the UK.
You asked about supplements. I take a calcium supplement that has everything in it for good absorption (calcium citrate, magnesium, vitamin K2, boron, zinc, manganese, copper and vitamin D), plus a magnesium supplement and one or two vitamin D3 supplements. I take these every day with a glass of fresh, unsweetened soy milk, enriched with calcium phosphate. I buy these. Our National Health Service can prescribe calcium supplements, but they are made from calcium carbonate and cannot be absorbed very well.
The reason I take these supplements is because, after finishing chemotherapy, radiotherapy and surgery, I discovered that I had lost some height. I had a DEXA scan to examine my bone density and was told that I had osteoporosis. This was probably due to my cancer treatment, as it seems quite common for cancer treatment to affect the bones in this way.
When I was first diagnosed in June 2005, I also discovered that I had hyperparathyroidism (an over active parathyroid gland). This can also cause osteoporosis, but I had not lost any height until after my cancer treatment. There is research to show a connection between breast cancer and hyperparathyroidism, but no certainty about which one comes first. My consultant and endocrinologist told me she thought my hyperparathyroidism preceded the breast cancer, as the adenoma on my parathyroid gland was quite large. I was cured on hyperparathyroidism when the adenoma was removed.
At the hospital I was told to take calcium supplements and they also wanted me to have bisphosphonates, which I refused to have.
The other supplements that I take are two vitamin B tablets and a multivitamin tablet, every other day. On the days when I do not take these I take an iron and vitamin C (combined) tablet. Every day I take two kelp tablets and I sprinkle kelp powder on my food.
The other two constants in my food regime are decaffeinated green tea and bitter apricot kernels.
I do not eat or drink any dairy products or buy any eggs. If I am out I may have an egg sandwich.
I think that all women newly diagnosed with breast cancer should have a DEXA scan before treatment to find out what state their bones are in and should have one after treatment to see if they have developed osteopenia or osteoporosis. Those viewing the thread kindly note that a DEXA scan is very low radiation and measures bone density, and is not to be confused with a bone nucleide scan that is high in radiation and is used to ascertain whether cancer has spread to the bones.
I hope, Debra, that you will continue to post and I am sure we shall all be interested in any more recipes you may have created.
You may be interested to know that hyperparathyroidism results in calcium being taken from the bones and let into the blood stream, so you end up with high calcium levels showing up in any blood test. If you want to get a diagnosis of hyperparathyroidism, high calcium level is not a sufficient symptom. You need to get your parathyroid hormone level (PTH) measured and if it is high you need to see an endocrinologist. Your calcium level can be normal or just above with hyperparathyroidism.
Kind thoughts from the UK.
Sylvia xxxx
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Hello BernieEllen
I am just popping in to say thank you for the beautiful photograph.
Kind thoughts.
Sylvia xxxx
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Good Morning,
If anyone has any spare energy will they send it my way.
My son in law is off to work in England for 2 weeks and so we will go for Oskar after my appt for pain injections on Tuesday. Not sure when his Daddy will be back exactly but Oskar will celebrate his 2nd birthday with us.
It takes me nearly 4 hrs to drive there so he has to come to stay. Fingers crossed that the weather will be fine as he loves to be outside. Our garden is still water logged and so he will definitely need his wellies.
Still so frustrated with the decision re invalidity as I have spoken to my friend and she knows 2 people in Dublin who were granted it last week. Have big decisions to make and nowhere to go for advice.
Weather here looks ok and I must get on with Oskar proofing the house.
Thoughts to everyone in treatment.x
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