Calling all triple negative breast cancer patients in the UK
Comments
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Hello Liv,
I am just popping in to say Happy Australia Day. I saw on my diary that it is a public holiday in Australia on Monday.
What celebrations do you have? Do families do anything special?
I am hoping that Carolben will get good news next week.
Love,
Sylvia.xxx
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Hello everyone.
I thought this link might be of interest to you. It is about the benefits of resveratrol, an antioxidant that is found in red and black grapes. It is concentrated in the skin and the seeds. Here in the UK all grapes that I have found seem to be seedless, so, once again, something of value is being discarded. Although resveratrol can be found in red wine, and pure red grape juice, you are better off eating the whole grape as you get fibre as well. The less processed any food the better.
Remember, as well, that everything is better in moderation. Enjoy your glass of red wine, but remember that alcohol is a risk factor for cancers, it is an addictive drug and that it destroys brain cells.
http://www.mayoclinic.com/health/food-and-nutrition/AN00576
Thinking of you all and will be posting tomorrow as quite a few of you have treatments, check ups etc. next week.
Enjoy your Sunday, try to switch off breast cancer and remember that we must not let cancer take over our lives. Remember, there is more to life than cancer. Enjoy your food, have treats and do not worry if you do not always keep to strict healthy foods.
Wishing you all the very best.
Sylvia.
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sylvia thx beautiful lady- yes good idea will switch off and enjoy today.
you too have a nice day and hopefully you do something that makes you smile.
will chat later - got a few things to do right now.
& (((((carol)))) .
x
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oh gosh, yes, it sure does suck, big time!! I'm right back into that bloody nightmare!! I'm all over the place, yesterday I was out here and out there with friends, to the market, to the beach, out for supper - busy, busy, trying to carry on doing all the things I like to do. But every so often my stomach just drops out and I remember this threat hanging over me, and then I forget to breathe and can really panic!
But dammit, yes, I've done this before and I can do it again! Blast those damn cancer cells out of eternity!! The waiting is so hard, the fear comes and goes, I try not to let it get a hold on me. I'd like to know what this all means, what the prognosis is, what the treatment options are, etc etc, but we'll only be able to have a better idea about all of that, hopefully by Friday or Monday week at the latest. I dont want to read up on it right now, just trying to concentrate on putting on some weight, getting strong and enjoying each day.
I have a niece who is a specialist physician, super specialising in pulmonology now, my father was a surgeon, my one sister is a medical bsc, other sister a physical therapist - they have all looked at ct report and agree with onc's belief that they are mets. It's like no one can give me any hope that maybe, just maybe it's something else. So I need to get the acceptance that this is most possible and if there is good news, well, what a bonus!
Early mornings are the worst, opening my eyes to a new day and then wham it hits me! Once I get going, shower, have a good cry and maybe a few yells, and do some good breathing meditation. Then eat - back on oatmeal for the calories, a friend lent me her juicer, juiced up carrots and different sprouts. And then if I'm still hyperventilating my last resort is a mild tranquiliser, which really does help! And I'm not going to feel guilty for taking something like that, it's not like it knocks me out, it just helps me relax my stomach muscles and breathe!
Anyone got some good juicing recipes? And any suggestions on putting on weight and getting my body strong enough for another round of chemo would be also much appreciated!
Liv, so happy you're doing some yoga - it does improve flexablity - I love the stretching out my joints, I love the gentleness of it too. I have a class this afternoon - a Sunday afternoon treat, that I can really do with. My yoga teacher is an angel - going off now to have a baby next month, so I'll join a different class till she gets back to teaching. And don't you just float out of a class? It also teaches me to surrender my body and let go of the tension; I tend to hold on so tight, especially now.
Lola, thanks, yes, I was also hopefull it would be scarring from rads, I do still hold on to that little hope that maybe they are wrong!
Lola and Sylvia, I had such a good prognosis - exactly as you say, I was so sure they had gotten all the cancer out with the mx,they did a snb and it was clear, no node involvement. I was so sure that all the tx was just to make absolutely sure nothing had managed to escape unnoticed. I was in a grey area, with the size, stage 1, grade 2, so they thought it was enough to only use endoxan and adriamycin and not taxotere. They were not even sure I needed rads, but decided to do it just to be sure! That's the horrible thing about this disease - it's unpredictable and sneaky and mean, and we are still fumbling in the dark a lot as far as treatment goes, but we do have the treatment, which is something.
Interesting about black grapes with seeds, Sylvia - I just got me a box yesterday at the market, a friend of mine had been talking about it. So I'm crunching those grape seeds!
Thank you all for your encouragement and caring, I get a lot of comfort here!
Lots of love
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((((((hugs)))))carol & ben - it sure does suck big time, there is nothing nice waiting for results pending.
carol you will get through this. your are in shock, in time your body will go into survival mode and you will be ok....you are a warrior sister.
definitely try some protein shakes for putting on weight, try & make sure its not full of sugar or artificial sugar.not endorsing this link but Resveratrol in red wine is a strong antioxidant, red grapes http://www.urmc.rochester.edu/news/story/index.cfm?id=1934 - dont know if your a non drinker but just in case you fancy a like a little glass of red to unwind im sure it would be ok. one glass wouldnt hurt but may do some good at the same time.
carol you certainly do not have have to justify or feel guilty about taking anything you opt to try or take, especially if it makes you feel better.
a great physician once said to me, whatever makes you feel good take it but the trick is not to increase the dosage and his words were, take it forever if it helps but dont keep increasing the dose. to me thats common sense. why suffer anxiety or sleep deprivation or depression when you have tried everything natural and after many years still in the same boat. if it feels good- if it helps, do it!! tis a long time dead, this is our life now, anything to make you feel good, do it?
lets face it just about everything if you search hard enough will have pros and cons..
babes we are with you all the way.
you will be ok!
xxxxxxxx
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Sylvia, you are right, my appointment is Tuesday 5th. I don't know where I got the 4th from.
I met some friends at a 40th birthday party last night and we have decided to do a Land Rover pull from Killyleagh to Crossgar to Downpatrick, a distance of about 12 miles on Sundays May 5. Hopefully we will raise a good amount for the Foundation.
Michael
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Hang in there Carolben! I too am in the same boat, TN, waiting for the lab results from a lung biopsy. I also have been going through the horrible up and down swings with my emotions. They found my mystery nodes by accident when I got a chest x-ray. My other wild minded posts can be found on the TN board ... ugh, waiting is emotional torture. I am not in the UK, but I am still sending you my positive thoughts and prayers for a benign pathology!
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Hey Liv, thanks so much, will have to stick to eating the grapes, I've been sober for 23 years, and can't do the wine! That is great advice - take it, but don't increase the dose, good one! The early mornings get me - I open my eyes and then it hits me. Am seriously trying not to think about the prognosis till we get the results, and know what we're dealing with.
I am a warrior and will fight this one too, you're so right, whatever it is! And I know you guys are all there with me!
11tyBillion - thanks for your input, when do you get your results? I am so sorry you are going through this too, thanks for your thoughts and prayers, mine are with you too, please let us know when you know. Will go look for your posts.
Tried the juicer out, and one glass had a full packet of carrots and a packet of sprouts - so amazing to be able to get so many veggies down the hatch in such an easy way!
love to all
xxx
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(((((((((((((((((((((CAROL))))))))))))))))))0 -
encouraging.. Positves about Negatives
http://hormonenegative.blogspot.com.au/
Protease may help define new subset of TNBC—and lead to treatment.
Researchers at St, Louis University have found a molecular signature that may define a particular subset of triple-negative breast cancer, which can ultimate lead to target therapy for that group of patients. In specific, they have uncovered a pathway responsible for the loss of 53BP1 in TNBC tumors related to the BRCA1 mutation. Loss of BRCA1, they discovered, increases the expression of the protease cathepsin L (CTSL), which causes the degradation of 53BP1. Cells that have lost both BRCA1 and 53BP1 have the ability to repair DNA and proliferate. That means the protease helps cancer cells with faulty BRCA1 survive—it is a defined bad guy in TNBC growth. And, when we know who the bad guy is, we can stop looking at ways to stop him in his mean old tracks.
The research was published in the Journal of Cell Biology January 17, 2013.Treatment of BRCA1-deficient tumor cells with vitamin D restores high levels of 53BP1 slows the growth of cancer cells, they discovered. In addition, vitamin D treatment might restore the sensitivity to PARP inhibitors in patients who become resistant. Thus, a combination of vitamin D and PARP inhibitors could be effective treatment for some TNBC patients.They also found that some TNBC tumors have:
• high levels of nuclear CTSL
• low levels of 53BP1 and nuclear vitamin D receptor (VDR)
These unique biomarkers can be used for personalized treatment, identifying those who might benefit the most from vitamin D.
Clinical trials are underway to develop vitamin D and cathepsin inhibitors as single agents or in combination with different drugs.0 -
Hello Carolben
I am so sorry you are facing this agonising wait; I think the waiting and not knowing are in some ways worse than the reality. Hold onto the fact that there may still be some other answer, not the one you are thinking of.
You asked about juicing recipes;there is a rather old thread in 'Complementary and Holistic medicine and treatment' entitled 'Juicing'; if you do a search you will find it. Although no-one has contributed to this thread for a couple of years, there are some good ideas for juicing in there.
Your signature shows you had DCIS dx in 1999; was the mastectomy last year for a recurrence?Sorry if you have already explained this elsewhere.
Thinking of you and hoping for the best outcome,
Sam x
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Lunch with the girls
A group of 15-year-old girlfriends discussed where to meet for dinner. Finally they agreed to meet at the Dairy Queen, next door to the Ocean View restaurant because they had only $6.00 among them and Brad Johnson, the cute boy in Social Studies, lived on that street.
10 years later, the group of 25-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant because the beer was cheap, the restaurant offered free snacks, the band was good, there was no cover charge, and there were lots of cute guys.10 years later, the group of 35-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant, because the cosmos were good, it was right near the gym and if they went late enough there wouldn't be too many whiny little kids.
10 years later, the group of 45-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant because the martinis were big and the waiters wore tight pants and had nice buns.
10 years later, the group of 55-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant because the prices were reasonable, the wine list was good the restaurant had windows that opened (in case of hot flashes) and they served fish which is good for your cholesterol.
10 years later, the group of 65-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant because the lighting was good and the restaurant had a senior citizen discount.
10 years later, the group of 75-year-old girlfriends discussed where to meet for dinner. Finally, they agreed to meet at the Ocean View restaurant because the food was not too spicy and the restaurant was handicapped-accessible.
10 years later, the group of 85-year-old girlfriends discussed where to meet for dinner. Finally they agreed to meet at the Ocean View restaurant because they had never been there before.0 -
carol & ben
how are you today? dont suppose you are feeling anything much apart from this pending appointment.did you do any yoga or meditation, what have you been eating, juices etc?
will be thinking of you.
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too funny bernie.. hahahahaaaaaaaaaaaaaaaaaaaaaaaaaa
loved it!
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Hi All,
I hope everyone had a good weekend, we had a lovely one spending time with my beautiful little family. Ate some junk this weekend (all veggie junk though), sod it, i need to live and have some junk. Been eating loads of black grapes recently thanks to you Sylvia. I look forward to my glass of red wine though when treatment is over
xx
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Hello Carolben.
I know that the weekend and today will have been difficult for you, but tomorrow is nearly here and then you will not have to wait too long to find out what is going on. Let us not think the worst until you have been told what is wrong and then remember there will be some kind of treatment.
Looking again at your details, I noticed that you were diagnosed with DCIS back 1999, but that you did not have any treatment until 2012. I was wondering whether with the DCIS you were told you did not need any treatment. I know that here in the UK there are different ideas about DCIS. By my friend, who is a retired nurse and has been involved with cancer patients, I was told that some in the medical profession do not classify DCIS as cancer, but as a pre-cancerous state (deposits but no tumour) that may never develop into full blown cancer. I think it is sometimes not included in cancer statistics. All I know is that two sisters of this friend of mine were diagnosed with DCIS some years ago and one of them did not have any treatment, but the other one, a nurse, insisted on treatment. My own breast cancer surgeon, so I was told, did not think this woman needed surgery, but performed it because the woman was so insistent. I do not know what to think.
You said that you wanted to put on some weight. Did you lose weight during treatment or since treatment? Apparently the best way to put on weight is to eat plenty of pasta but you must make sure that it is wholegrain pasta and not the processed stuff. It is even better if you can buy spelt pasta. Spelt is the healthy and nutritious form of wheat, and is more easily digested than the wheat used today. It is the original old wheat.
You seem well served in the family to get good medical advice, but until you have gone through the process with your own medical team, you will not know. Once you know what it is you will have the strength and determination to deal with it.
I am sure we can all identify with your thoughts and emotions as you wait to know what is going to happen. I remember how I felt when I walked out of my GP's surgery after she had told me she thought I had breast cancer and would now be referred to the hospital. I went into completely stunned silence, even though I knew what she was going to say when I walked in. When I had the official diagnosis and was told the prognosis was not good, I was walking around and kept saying to myself that I had cancer and that went on for weeks. I went to bed with it going through my head and woke up with it going through my head. You will get through this.
I know we must all do what we feel is right. When I was first diagnosed I read about a reputable herbalist who treated cancer patients. I read about him in Icon magazine and the book The Cancer Directory by Dr Rosy Daniels. I wrote to him immediately and asked for advice. It was through him that I bought a book about cancer treatment and was also prescribed wormwood and astragalus. He was not in favour of juicing fruits and vegetables, especially carrots, because of their high sugar content in the concentrated form of juice. He found that his patients got worse on carrot juice. Again, I am just passing on this information. We have to remember that cancers feed on sugar.
If I were in your position, I would be building up my strength by having nutritious meals three times a day. I would probably take astragalus and pycnogenol to boost the immune system.
I was glad to know that you had found some black grapes with seeds. I wish I could find some here. When I was growing up all grapes had seeds in them! Make sure you get plenty of broccoli and you could have it with some purple sprouting broccoli for an extra boost.
Wishing you all the very best. Keep posting, it will pass the time.
Sylvia xxxx
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Hello Lolalee.
Thank you for your post and all the details about your diagnosis. It is so very useful to have details of individual cases. I was surprised that the medical experts would not test you for HER2. There seems to be quite a lot of differences about treatment with different medical teams.
Wishing you well.
Sylvia xxxx
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Hello Liv.
Thank you for all your posts and the links. I am sure everyone will find them useful. Thank you for the information about TNBC and recent research.
I hope you had a good weekend.
Best wishes.
Sylvia xxxx
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Hello Michael.
I hope everything went well today.
I was interested to know about what you are getting up to on May 5th. That is a very good way to save fuel! It sounds like very hard work to me. We shall all be cheering you on.
All the best.
Sylvia.
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Hello 11tyBillion.
I was interested in your post and wanted to say welcome to our thread. I do hope everything will be fine when you get the lab results from your lung biopsy.
I do hope these mystery nodes will turn out to be nothing about which to worry. Did you get a chest x-ray because you had symptoms that were worrying you? We are all sending our best wishes to you. Let us know how you get on.
Best wishes.
Sylvia xxxx
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Hello Bernie.
Thank you for the hilarious joke, as we all need a laugh, with so many people having problems with their cancer.
By the way. Have you posted on this thread before!!!!! HaHaHa!
I was so glad to see you back on form.
I hope you are well and that your brother is well.
It has been pouring down with rain all day here and the wind is blowing. Will the sun ever shine?
Always in my thoughts.
Sylvia xxxx
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Hello Mumtobe.
Thank you for your post. I am so glad that you had a lovely time with your family.
I hope you enjoyed your junk this weekend, but am intrigued to know what veggie junk it was that you had! I really believe that we have to try to live as normally as possible and remember that food alone will not be the cause of our breast cancer. As my breast cancer consultant told me, something when I was an embryo could be one of the causes and there are probably so many others that are out of our control.
My husband, Raymond, is very helpful when it comes to keeping with me on a healthy diet, but obviously, today, he needed a dose of junk. We were in the supermarket at the cash with just a few bits we had forgotten, when he suddenly said “Do you think it will be alright if I get a packet of fig biscuits?” I gave the green light and he was off to get them in a flash and has already eaten some!!!!
I was glad to know you are eating black grapes. Remember that red ones are good as well.
I hope all goes well with your treatment this week. It is not long to go before you can enjoy that glass of red wine. That can be good motivation to get you through to the end of treatment.
Fond thoughts.
Sylvia xxxx
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Hello everyone.
As we begin another week, I would just like to say that I hope it will be one that does not bring too much stress to any of you.
Special hellos to the following.
linali (Lindsay). I hope you are not still feeling anxious and low in spirits. I have seen in the shops a herbal remedy for relaxing and giving a restful night. It is known as Kalms.
To FernMF, I hope you are well and enjoying life.
To sam52, I hope all is well and that the weather is not getting to you. I have never known so much rain, but I am glad it is not snow!
To Kymn, we have not heard from you in a long time from Alberta, Canada. I hope all is well and that you are busy enjoying life and doing more courses.
To jenn-uk, I do hope that all is well and that you now have your treatment plan that I think you were supposed to get on January 24th. I am sure we would all be interested to know what treatment you are going to have.
To EmmaL, we have not heard from you in a while and I am sure we would all like to know how you are.
To InspiredbyDolce, how are things going with you these days?
To triplenegativebutpositive7 (Andrea), how are you getting on with chemotherapy?
To CarlaDS, now that you have finished chemotherapy, what is next for you?
To Placid44, I just wanted to let you know that we are thinking of you. How are you feeling about the bilateral mastectomy scheduled for February 12th 2013?
To Jan in California, I was wondering how you are. I hope all is well. Am I right in thinking that you have had reconstruction?
To any I may have missed, I apologise. This thread has been very busy lately.
Very best wishes to all.
Sylvia.
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Hi Carol....
I can't help but want to give you a big hug.....so here it is a BIG HUG.....I am so sorry you have to go through through this again, but if it any consolation, I had a friend that was just went for a biopsy for a nodule in her lung and it turned out to be fungal...so there is always hope.
From your signature you posted you had DCIS 2cm triple Negative in 1999...was this also the same for your last diagnosis?
I wish you good luck on Tuesday...I will be sending my most positive thoughts and prayers...you will get through it....
Hugs and prayers
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Hi Carol....
I can't help but want to give you a big hug.....so here it is a BIG HUG.....I am so sorry you have to go through through this again, but if it any consolation, I had a friend that was just went for a biopsy for a nodule in her lung and it turned out to be fungal...so there is always hope.
From your signature you posted you had DCIS 2cm triple Negative in 1999...was this also the same for your last diagnosis?
I wish you good luck on Tuesday...I will be sending my most positive thoughts and prayers...you will get through it....
Hugs and prayers
Lisa0 -
Hello Carolben! I hope you are able to take a few deep, relaxing breaths today. You asked me when my results will be in, and i really dont know, they said between 5 and 9 days (got the biopsy last Thursday). My appt with my onc is not until Feb 11th. SO i donot know if they will call me with the results OR jsut wait to spring it on me when I vist mt onc. Waiting is the hardest, and so stressful ... but we are all here for you, sending positive prayeers and thoughts your way!
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Thanks Sam52, my mistake, I'd entered the date incorrectly - was diagnosed for the first time last year in May -nothing before that. I have now corrected my mistake!
Thanks for the info on where to find the juicing recipes - I'll go find it!
And thanks for your encouragement - the waiting is the worst, but tomorrow we do the biopsy, next Monday will be d-day to discuss their findings and treatment. Another week of waiting!!
Lots of love
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Hey Sylvia,
thanks for your post - I made a mistake filling in my details and put in 1999 instead of 2012. So I was diagnosed with bc in May last year,
nothing before that. I've corrected it now. Which is why I'm so shocked that it could spread so soon!
Anyway in for the biopsy tomorrow - My sister arrives on Sunday and we'll meet with my onc on Monday for results and to discuss treatment options.
I lost a couple of kilos (2.2 pounds to a kilo) during chemo and rads, then dropped 5 kg more after the end of rads. Thanks for the info re the carrots, I will definately find the thread that Sam52 mentioned. I just love the fact that juicing is an easy way to get the necessary veggies etc into one glassfull! The thought of chewing my way through a big salad right now is not attractive!
I'm so tired right now, my bed is calling! Big day tomorrow.
Lots of love
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Hi Carolben
Thanks for the clarification of your dx.
You certainly had what might be termed 'belt and braces' in terms of treatment for DCIS; I have not heard of chemo for such an early-stage cancer before, but maybe it was because of the triple-negative status.As you say, this makes it even more surprising that it might have spread.I am still hoping there is another explanation for the nodules.
Will be thinking of you tomorrow; ghastly having to wait a week for results.
Hugs,
Sam
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Hello Sylvia
I thought I would let you know that I had a rheumatology appointment today at the hospital.(I have these twice-yearly on account of my fibromyalgia).I asked him if he could organise a DEXA scan for me, and he also suggested I have blood tests, to which I asked him to add PTH. So that was easy!I don't know when the DEXA scan will be, but at least it is in the pipeline.
While I was at the hospital I went to try and get a mammogram appointment, since it is now 2 years since the last one.I have been contacted by the breast-screening service, but declined this, as I would prefer to be seen at the hospital where I was diagnosed.I finally pinned down a breast-care nurse, and apparently, since I have been 'discharged', I have to get my GP to make a referral to the breast clinic before I can get a mammogram.So this was not such an easy mission.....
It is raining constantly here in London, and is also windy.But at least it is warmer and no snow.
With love,
Sam x
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