Calling all triple negative breast cancer patients in the UK
Comments
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Hi Pam,
I'm glad you liked the info on the radiation burn treatments, and I agree, aloe is just the best. With the calendula,it must be really good. I hope that is all clearing up for you, and I'm glad you don't have to have the boosts The Silvadene sulfur cream is very good, we used it on my husband's incision years ago when his knee surgery became infected.
I did lose weight during chemo, at one point my MO said he wondered why I wasn't gaining weight, I said what are you talking about? Nothing has any taste, and I feel awful all of the time, how can I gain weight? He really seemed puzzled! I have since gained the weight back that I lost.
My wigs could probably use a washing, but I'll just leave them where they are for now, and hope they never come into use again!
I have done well with the meditation until today,I have just been gone too much, and now have been trying to get caught up with my friends here! I have already found myself dropping into the meditative state quickly when I do it.
Congratulations again on finishing radiation, hope you are celebrating!
Talk to you soon, Mary
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hi Sylvia,
I did see your latest post, I will respond later. I am out of steam for today!
Talk to you soon, Mary
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Hi sylvia, this is Enrique Dussel, He is a philosopher born in Argentina, and asylum in Mexico, from where he has made his academic career, much work on decolonization, so that those born in Latin America begin to think for themselves and somehow for themselves.
u can put the subtitles in spanish,
Marias
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Sylvia and all,
I have not bought the book Cancer Whisperer, but I have visited Sophie's web page - and have listened to a few of her talks - she is very inspiring and is most definitely a bright light for anyone who has or has had cancer - actually, any disease. She focuses a lot on how our emotions affect our physical health and talks about grief as being a wonderful healer - and while most people hide from grief and try not to talk about it, she encourages one to embrace grief and let it wash over us and through us - and by doing so, great things will happen e.g. rather than feeling more sadness, we will actually experience joy, relief and release. I like what she has to say - she is a writer and writes with flare. Sophie seems to have a large following and I am grateful for what she is doing with her life - she is a young, talented woman who is making her metastatic cancer work for her in a positive way - and she shares this with as many people as she can - in addition to mothering a 6 year old daughter. Sophie also has a facebook page where people can leave comments and she posts photos of herself and her family and snippets of her talks around the world.
Maryna - you are doing an amazing job at checking in with people and offering support and encouragement. I have been on this thread for a long time, and although I like to read the comments, I am working very hard on keeping my main focus away from cancer - although I am well aware that people always need help and guidance while they are travelling the cancer journey. I well remember when reading this site was the very first thing I did in the mornings - just so hungry for any information that would help me along the path of treatments and then recovery. I will try to be as supportive as I can, but there are a lot of pulls on my time and attention - the main one being organizing my home and decluttering, while helping my daughter with her senior dog that needs a lot of attention right now - don't know how daughter is going to manage with a new baby as well. One step at a time, I guess.
For all those still going through treatments - I hope you have limited side effects and remember to rest lots.
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Hello Lovely People!
Today I am finished with my chemotherapy. I just got home from the hospital. I am so happy but also so sleepy. Talk to you all later!!!
Doing the Happy Dance before i go to bed!
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Hello Gina,
I just wanted to say well done on finishing your chemotherapy. Where do you go from here?
Fond thoughts.
Sylvia xxxx
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Hello adagio,
I was interested in what you had to say about Sophie of the Cancer Whisperer. I agree that she is very inspiring and definitely has a way with words. She took control of her cancer journey and never stopped asking questions. This is what you have to do. From this point of view, she reminds me of me back in 2005. I think my medical team were surprised at all my questions and I remember them saying that most patients did not want to know anything about their treatment and just wanted it done. My inspiration was the book The Cancer Directory by Dr Rosie Daniels newly published in 2005.
Did you have a public holiday in BC on Monday February 20th? In Ontario it was a public holiday for Family Day.
Take care.
Fond thoughts.
Sylvia xxxx
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Hello Marias,
Thank you for the video. I shall look up Enrique Dussel but I do not have the time to go through these videos. I spend as little time as possible sitting in front of the computer as I think it is very unhealthy. I listened a little and I do love the sound of the Spanish language.
It makes absolute sense for those born in Latin America to think for themselves. I have often wondered what the world would look like now if the Europeans had stayed in their own countries and left the rest of the world to develop without being bossed around.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I hope you are all OK.
Hello Rhonda, have you now finished your chemotherapy with Taxol? I know it was supposed to finish in mid-February. Tell is what is next for you.
Hello Kath, have you now finished radiotherapy or are you doing the past few days?
Hello Pam, how much more radiotherapy do you have to do? Please remind us.
Hello Chris in England, we have not heard from you in a while. I know you are going through radiotherapy. How is everything going?
Hello Maggie in Scotland, we have not heard from you in a while. I know you are busy. I was wondering if you now have your further treatment sorted out?
Hello lamis in the UK, how is your mother getting on with the Taxotere treatment?
Hello Marias, how are you feeling as you wait for your fourth FAC chemotherapy on February 27th? I think you and lamis are the only two going through chemotherapy now.
Hello to 4everStrong in Paris, France, and Val in the US.
Hello Amanda and InspiredbyDolce, thinking of you and sending best wishes.
Sylvia xxxx
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Hello everyone again,
I am just popping in to say that I marked 11 years and 8 months yesterday, since diagnosis. It seems a long time ago, but all the information about that time is still clear in my mind.
Thinking of you all. Best wishes.
Sylvia xxxx
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Congratulations Gina!!My last treatment is today!
Rhond
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Hello Ginaaaaaaaa Im so Happy for you!!! Congratulations.
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Sylvia, I found this lecture, I hope is not to long, is about the native of Colombia, they lives near to Popayan.
https://mundoroto.files.wordpress.com/2014/04/proy....
Maybe u can print some pages of this.
Or maybe u can do what I do. In pdf there is an option that allows you to hear the text aloud.
Marias
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I guess I have a really odd case.My lymph node that grew is Her2+.That means Herceptin and the other drug that are monochromal antibody therapy every three weeks for a yaar. Doctor said this is good news since it could be a triple negative that didn't respond to chemo.
Rhond
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Just chiming in Pam about radiation treatments. Aloe really worked well for me. I had to get a prescription for silvadene cream. It was the best, but only for open sores.
Calendula, the My Girls brand also worked really well.
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Gina - congratulations and well done. Completing chem is most definitely a significant milestone in this journey. Let us know what your next step is? but for now - you need to rest big time and sleep as much as your body needs. Take care and hugs to you.
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Sylvia, Rhonda, marias and adagio, thank you all so much for the congratulations and support. My treatment was really made a lot easier knowing I have some friends who are and those who have been in similar situations as i am. I am so grateful for your concern and support, sisters and to BCO.
I think i will celebrate a little bit like maybe go to a nice local beach spot with my family. I will try to gain my normal weight and bloodcounts back but of course i will still be watching what i eat. I intend to maintain a low normal weight level.
I am scheduled for another round of bloodtests, ct or pet scan, breast ultrasound in april. I will then decide if i will take Tamoxifen or not depending on the results of my labtests.
My MO is not really pushing me on a Tamoxifen maintenance but says it will help with preventing a breast cancer recurrence. She says it might also help with preventing metastasis as my last ct scan sometime in october last year before my chemo, showed a very small liver lesion and a tiny lung nodule, both of which are yet too small to be specifically identified. I think i've already mentioned about the lesion and nodule in my previous posts sometime in november last year.
She said she gave me a 300-pill Tamoxifen prescription because she doesn't intend to really have me on the five-year hormonal therapy program which is when uterine cancers usually comes out.
If i feel side effects during the 300-day program, i should report to her and anytime, i can stop it.
My decision for now is to delay the Tamoxifen which is supposed to start a month after my last chemo which should be on the 3rd week of March. I will wait for my ct scan and other labtests results before i make my final decision on Tamoxifen. Also, I have yet to determine whether i should undergo PET scan or CT scan. My MO says PET scan is more comprehensive but also a lot more expensive. My bone nuclide scan will be next year, a year after my last one. I also mentioned about a Bone Dexa Scan and she says it is to determine bone density used especially for women on AI therapy. So I'll be seeing my MO in April after my labtests.
I also asked her about the food that i should eat and she says there's no restriction except for soya which surprised me a bit. She says it enhances estrogen production and therefore not good. I've read of conflicting claims about soya benefits and dangers. I've read the same things about flaxseed. Some says they increase estrogen. I am confused about human estrogen and plant estrogen and there is no definitive study/conclusion on this coming from a reputable cancer organization so i am staying away from soya and flaxseed until i see a convincing article on them.
I will continue taking Turmeric, nuts, coconuts, veggies, fruits, saltwater fishes, organic probiotics/prebiotics, and other beneficial supplements like vit B, D, C, zinc, and others a month after my chemo.
Ok, another long post from me. I will contnue to read the previous posts here and try to reply. This is all for now.
I am so grateful to all of you. May the Good Lord bless you all for your kindness and love.
Hugs and Kisses,
Gina
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Rhonda, Congratulations too! Yay!
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To all of my TN family,
Sending you lots of Hugs and Kisses!
A Gigantic Thank You too!!!
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Hello Gina
You have a lot to think about.
As for nutrition, I do not take any notice of what orthodox medicine says about nutrition. They know very little. They believe in drugs and doing everything with drugs, regardless of the side effects and lack of quality of life. You have to make up your own mind about what you are going to eat.
Good nutrition, some walking and managing stress, as well as toxins in your environment, are the key to a healthy life.
Fond thoughts.
Sylvia xxxx
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Hello Marias,
Thank you for the link. Again, I do not have the time to read all this, but I shall print off the introduction and try to read it.
Thinking of you and hope all goes well with your chemotherapy.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
I was surprised to read that your node has turned out to be HER2+. Do you know how strongly HER2+ it is? Herceptin is the drug of choice to treat HER2+. It is not without side effects and you should ask about these.
Wishing you all the best.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I am posting this chart from a book I mentioned in a recent post, entitled Illness is not Inevitable - DISEASE FREE by Readers Digest. The following is a chart I found there suggesting the most important ways to prevent more than 90 common health conditions, both major and minor. These illnesses include things such as heart disease, diabetes, cancer, colds and snoring. It is a very good reference book.
Best wishes
Sylvia xxxx
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Hi Sylvia,
Everyone was Surprised about the Her2*.They repeated the test twice.They didn't say how strong it was. It the report should be online now so I will look.I was hoping there might be another reason.They want me
To do one more Taxol with Herceptin and Perjeta(sp) next week then surgery in 3 weeks depending on surgeon's schedule.I don't know how to feel about this.
Rhond
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Hi, Sylvia,
I just had one of those moments we've all had: I had typed a long epistle to you, and wasn't yet finished; I hit the wrong button and blip! erased the whole thing! Grrrr, so frustrating. Now my time is short and I'm going to try again!
I can't even imagine the difficulties of living through WWII and the aftermath, the loss of lives, properties, businesses, and so many citizens and young men lost in battle. We are fortunate here that we have not had a war on our soil since our Civil War; although more lives were lost there, than were lost in all the other wars we have been in. We humans seem unable to live together peacefully on a large scale.
I do not understand your system of government fully. How do the Lords become Lords, is it strictly hereditary? Does every Lord get to go to London and have a voice? How much influence do they have? We have representatives, elected every 2 years; my state has 9 of them and I only vote for one. They are apportioned in districts according to population numbers. We have 2 Senators. These people all go to Washington and hopefully represent their districts and State there. This formula is repeated in the State Houses, and those representatives and senators remain in the State Capitols to govern, headed by a Governor and Lieutenant Governor. The State has autonomy, but can be trumped by the Federal government. I do not align fully with any party either, but since we only have 2 with any power, one usually has to come down on one side or the other.
Last night I came home and began working on papers to take to the tax accountant tomorrow, it is that time of year, I find it depressing; like throwing money down a rathole.
I am going to have to close for now, since I threw away my earlier message I will have to finish this up later!
Be back later, Mary
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Sylvia,
Back again! Yes, I ordered Cancer Whisperer, I think this is the 4th cancer book I have bought, I have read several more. My favorites so far are Chris Woollams' book, although I think I prefer his writing in his blog form. Anti-Cancer, A New Way of Life, and The Cancer Survivor's Companion. The last is a simple little book, but it reminds us of ways to cope with the new version of ourselves that many of us find afterwards.
I envy your bookstores, where you can buy old and new books of worth. Much of disease is preventable, you listed 6 major causes;
High blood pressure: Unchecked, it can cause kidney failure.
Intra-abdominal fat: leads to heart disease and diabetes, among other things
Depression: Depresses the immune system, which allows all kinds of diseases to occur, including occur
Insulin Resistance: Causes diabetes
Bad cholesterol ratio: Heart disease, stroke
Inflammation: Again, can cause all kinds of problems, including cancer
I have a question for you: I know you eat absolutely no dairy. I really like cheese, but eat almost none, if it is incorporated into a dish when I am eating out I do eat it. Yesterday I bought some goat cheese, infused with lavender and fennel pollen. So good, I crumbled some on an egg this morning. So I can't see why this would be bad for me. Is it truly the hormones, the anti-biotics and the anti-organic methods applied to cow's dairy that is bad for people with cancer, or is it inherent in any dairy products? And if so, why? Just wondered what is your opinion.
I heard something the other day about Donald Trump coming to the UK and the Queen is being pressured not to receive him. Not sure what is happening there, I will have to check on that later. Trump did return the bust of Winston Churchill to the Oval Office, it had been removed by the last occupant of that Office. The protesting UK populace is just responding to the negative press without questioning or checking for themselves; and I believe some of them are "for hire" protestors, paid to agitate and stir up trouble. We have them here too. Donald Trump was fairly elected, and he is trying to govern as he promised when he ran (and won!) I do not think he wants to be a dictator, or a tyrant, he had a seemingly very nice life before all this.
I have to sign off again, have a great afternoon, Mary
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Gina!
Congratulations on your graduation! I think when I finished chemo I stopped at the Dairy store and had a peach ice cream cone. I never otherwise eat ice cream so it was a very big treat, I felt quite decadent.
I don't know what to say about your Tamoxifen decision, I think I would like the diagnostic scans if they were available. I think it's always better to catch things early in the process. The Dexa-scan is a definite yes, good to know how your bones are doing. And it's a very simple test.
I do eat tofu occasionally when I feel the need of some protein added to something, other than that I find it to be tasteless. Not sure about the hormone thing as far as that goes, I have heard that soy mimics estrogen, don't know how much of it they are talking about ingesting.
For now you should just eat and rest and recover and enjoy the fact that you don't have to go to the infusion center!! Yayayay!
Talk to you soon, Mary
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Rhonda,
Congratulations to you too on finishing the large part of your treatment, I see your docs want you to do another round of chemo, I don't blame you for being reluctant. It would be hard to go back. I will be back to check on what the decision is, it sounds like it has been a very fluid situation for you lately, with unpleasant surprises. I am sorry about that, but it does sound like your docs are on top of things.
I will be back later, Love, Mary
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hi Gina
Well done! I finished my last boost today so done and dusted. Not sure what happens from
Here. Still very achy from chemo and reality had hit! I'm terrified
Cheers kat
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Kath,
Yay! Congrats on finishing your radiotherapy. Everything we finish, big or small, is worth celebrating! It's the least we can do for ourselves, having been thru all the stress, anxiety and for you, a small accident. Release yourself from all the worries as much can. Easier said than done, but we should always do that. Don't let cancer get help from his friends, stress and anxiety. Stay away from sugar, meat and alcohol as much as possible and try to find alternatives if you can. Moderate exercise, meditation, healthy diet and a torrid love affair are most beneficial. Oops, the love affair goes only for your hubby and family. Silly thought!!!
I am sure your medical team will assess you and give you a series of lab tests, after a month or two and then every six months for monitoring. I am lucky my MO didn't put me on radiation therapy but I was given 300-day Tamoxifen 20 mg regimen. She says it is up to me to take it or not depending on how i feel. It has many benefits but also dangers and side effects. I am delaying it until i get my April labtests.
For now, Relax, enjoy and savor your temporary freedom from drugs and hospitals. Then prepare to live a Spartan life always ready to do battle with this stupid disease. Remember, we are Warriors!!! Of course, you can always mix in some occassional indulgence in anything you want to escape monotony and boredom. Balance is the keyword.
Again, congratulations!
Love,
Gina
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