Calling all triple negative breast cancer patients in the UK
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Hi FernMF - I'm sorry you're having one of those days. I remember the restless feeling, but not being able to get up and do much. I found that I couldn't even really watch TV...but I did feel better sometimes just laying in bed and listening to the TV. I'd put on something funny to listen to and at least distract my brain from focusing on not feeling like myself (funny kept my spirits up). When I had trouble getting comfortable, I used pillows all over the place...under or between my legs and arms...whatever helped. I hope that you start turning the corner again soon and then can look forward to a couple of good weeks before the next round...as well as the fact that you're nearing the completion of this stuff. Hang in there.
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Thanks jen78. I am hoping tomorrow is back to more normal.
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Hi Sylvia,
Sorry I wasn't here for the special day and a slice of that cake.
I was away visiting my brother in law , mother in law and grandson. Leigh came up from Cork to see his uncle and cousins as it is years since they met. My brother in law is holding his own, no rads this week, but is trying to do too much and then is exhausted and in pain.
I will post longer later. Doing th e America trip but only have 4 days to book every thing, so busy few days ahead.
Thank you once again for bringing a calmness to a scarey and isolating experience .
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No sleep last night. Nightmares about not sleeping and toe cramps. Fun fun. But awake and seems like my eyes are back to normal.
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Hello InspiredbyDolce (Debra)
Thank you for your PM. I am wondering which forum and within that which thread you found my post. I do not post much on other threads, as I am very busy with the one I created two years ago. I sometimes go to other threads on the Triple Negative Forum and will answer a post if I feel that I can help.You can find my thread Calling all triple negative breast cancer patients in the UK by going to the Triple Negative Forum and working down the list. You will find it quickly as it is an active thread and near the top of the list. There are several American women on my thread.
I would be interested to know where you found my post that encouraged you to send a PM, so that I can have another look at it.
I do not miss meat at all, as I have not eaten it for a long time and was not eating it before diagnosis.
You are doing very well to have lost 20 pounds and you should give yourself credit for that. I would carry on as you are with the chicken and turkey and then decide what to do later. It can be very hard having a drastic change of diet. I think it is important to stay off dairy products, especially if they are not organic, as there is a theory that the growth hormones in dairy products could be a risk factor in the development of breast cancer. It is the same theory with meat and poultry.
I do not have a problem of being hungry because I do not I do not eat meat. I start the day with a good breakfast of sugar-less muesli to which I add extra chopped nuts with sliced banana and sugar-free, calcium enriched fresh soya milk. I have this with a bowl of mixed fresh fruit (especially raspberries and blueberries). I also have two slices of wholemeal bread with a healthy peanut butter. For lunch I have a canned wild salmon or tuna sandwich with slices of tomato. I also have fresh north Atlantic prawn sandwiches from time to time. For dinner I have lots of vegetables, salad with a couple of new potatoes and some fish or healthy soya burgers.
If I feel hungry between meals I have fruit or nuts. I drink lots of decaffeinated green tea which is said to be a cancer preventive.
I hope this helps.
I am going to PM this but I am also going to post it on my thread. In that way, I can see whether you post in response and I know you have found the thread.
Very best wishes
Sylvia0 -
Hello linali
It was so nice to hear from you.I was so glad to know that you have found the time to pop in, even though you are very busy. I was also glad to know that your brother-in-law was holding his own. You must tell him not to overdo things while going through treatment. Being exhausted will not help and will make it more likely to be in pain. I think that a gentle walk each day is enough. You do not want to be completely inactive because of the risk of DVT. Even if you are sitting or lying down, you do need to have a walk round to keep your legs active.
I do hope that all will go well with your trip. Are you going to meet up with christina1961? If you do, give her a big hug from me.
Thank you for your kind words.
It is so important to me to know that I am helping people. I shall never forget how frightened and stunned I was when I had my diagnosis and there was all this stuff about being negative, a poor prognosis and Tamoxifen being no good for me. Thank goodness everything is much more out in the open now.
Kind thoughts,
Sylvia0 -
Hello FernMF
I was sorry to read that you are having a hard time. Just try to relax as difficult as this may seem. It will get better as the days pass. Do you think it is the steroids that are causing the lack of sleep and the restlessness more than the chemotherapy? The Taxotere does affect the feet and the sensations are hard to describe. The souls of my feet and toes do not feel normal even after all these years. I just live with it. My oncologist and a podiatrist have both diagnosed neuropathy and said that there is nothing that can be done. I find bathing my feet in warm salty water helps a lot and keeping them well moisturised.Keep looking forward. You have nearly finished.
Thank you Jen78 for your support of FernMF and welcome to our thread.
Best wishes.
Sylvia xxxx0 -
Hello Caroline71,
I hope you are making good progress and that things went well on your last appointment.
Do you have any news about your surgery?
Best Wishes, Sylvia.
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Hello everyone,
I was wondering whether anyone has any statistics about what is said about TNBC and lower recurrence as the years go by. I think that you just do not know what can happen with any cancer and that you have to be vigilant and careful for ever.
Someone, tibet, is now four years since diagnosis and was asking about this.
Best Wishes,
Sylvia.
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Hello sam52
I just wanted to let you know that I have put a post on the forum Not diagnosed with recurrence or mets but concerned on the thread High blood calcium levels in order to keep it updated. As you know, it is all about hyperparathyroidism and possible connection with the development of breast cancer. This thread was started in 2009 and is too important to let die.Love
Sylvia xx0 -
Hello Michael
I just wanted to let you know that I have had another look at the Janette Collins Foundation website. I think you have all the information about TNBC that you need. It looks as though it is ready to go. The most difficult part will now be raising funds and I think £10,000 is a good start. I am sure Janette would be very proud of you.Have you any ideas about fund raising? I have just received my latest booklet/newsletter from Macmillan. I get news from them regularly because I contacted them when my much loved uncle was diagnosed with throat cancer, from which he died within ten months of diagnosis. I spoke to a counsellor on the phone, but did not learn much that I did not already know. I gave a small donation so they now keep in touch.
Their fund raising seems to be from all kinds of activities. The latest thing is Big Coffee mornings at Barclays banks to raise money. It is on September 28th. They are asking people to go or to organise their own coffee mornings to raise money. Someone I know does work for Macmillan and is organising some kind of fashion show in October and charging £10 entrance. Macmillan seems to have all kinds of activities organised into the future, including meals at expensive hotels. I wondered what you thought about all of this.
Wishing you all the very best.
Sylvia0 -
Hello InspiredbyDolce
Thank you for your PM.I think you are doing a great job with your diet and that you are very informed. We have discussed much of what you have said on the thread Calling all triple negative breast cancer patients in the UK in the Triple Negative forum. We have a lot of women who are very interested in healthy eating.
Like you, I try to buy organic, but if that is not possible I buy local produce. I think the secret is to stay away from processed foods, such as biscuits (cookies), cakes and pastries and all the junk foods, such as crisps, French fries and the like.
As for the green tea, I drink mainly the decaffeinated because of caffeine being an addictive drug and not recommended if you have osteoporosis, which I have as a result mainly of chemotherapy. I may have proper green leaf tea in the morning, as well as white tea, which is supposed to have more phenols than green tea. I think if you stick to a simple basic diet you cannot go far wrong. There is always controversy about food and drink, so that in the end you have to make your own choice. I buy only one brand of peanut butter that is made up of only peanuts. I do know about aflatoxin and nuts but have made my choice. I eat Brazils for selenium and almonds for calcium. Nuts are full of important nutrients.
I think that the western diet is too rich in animal products and processed foods and that is why there is so much cancer. Then there is alcohol and cigarettes which I think should be avoided like the plague. I also think that our environment is poisoning us and that the western way of life is stressful for a lot of people.
Wishing you all the best. I am sure you are doing all the right things.
Best wishes.
Sylvia0 -
Hello everyone
With reference to the question about HER2- and HER2+, you may find the following link makes interesting reading. It looks as though 0 to 1+ is negative and 2+ or 3+ is positive. I do not know how reliable these scores are. The link is:
http://www.breastcancer.org/symptoms/testing/types/ihc.jsp
Best wishes
Sylvia
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Wondering if toe cramps, knee pain (this is day 4 after Round 3 of Taxotere & Cytoxan) can be helped by taking magnesium. Asked the pharmacist - he said they don't have negative interaction with the chemo drugs - it says on the pack to take with food - I'll take a couple days and see if it helps . . . the toe cramps are waking me up the moment I nap/sleep . . .
Otherwise, today is better than yesterday . . . tomorrow will be better than today . . . getting through this . . .
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Hello FernMF
I was sorry to hear that you are having problems after your third round of chemotherapy. Taxotere does affect the feet. You should start to feel better as the days go by. Remember that we are told that the chemotherapy can make you feel worse as the treatment progresses. Just keep looking ahead to the fourth and last treatment.You should ask your oncologist about magnesium.
I take magnesium citrate every day as part of my way of helping with my osteoporosis. I take it with calcium citrate and vitamin D.
There is a lot of information on the internet but you might like to look at the following link.
Wishing you well.
Sylvia xxxx
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Good evening Sylvia
I don't really know how I am going to raise money. As soon as I get the green light from HMRC my stepson, Alex, will write and distribute a press release. Hopefully that will generate some media interest. I will then follow up with letters to businesses and hopefully in the meantime I will get some inspiration.
Michael
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Hi Sylvia,
Taking 5 minutes from ironing, and looking forward to the return of Downton Abbey. It is really the beginning of Autumn when programmes like Dr Who and Strictly Dancing are back on the TV. I have also been watching Parades End and will miss the last episode this friday,as I dont have Sky Plus.
I had hoped to meet up with Christina but our plans have changed. I was at the lymphedema clinic on Wednesday and she has warned me to move around on the flights and perhaps not travel as much and to ask my gp for anti biotics as she feels that I could develop cellulitis. I have been extremely tired recently as has Damian and so we have opted to stay longer in two places and so unfortunately we will not be going to Chattanooga.
I have been in touch with Caroline too.
Hoping that every one is having a good weekend and any SE are minimal and improving.
I going to a talk at the centre on Tuesday on how to chat to people that are newly diagnosed, how to be honest but supportive and how much to tell and when.
I probably not be able to check in here for around 2 weeks so sending good wishes and healing thoughts to every one
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Hello Sylvia
Thank you for keeping the thread 'high blood calcium levels' active; it seems,as you know, that there were a lot of us with the dual dx of bc and hyperparathyroidism - and very few endocrinologists are consulted when the serum calcium is elevated, meaning that the parathyroid disease is under-diagnosed.
With reference to HER2 status - I think I wrote in a previous post that the usual method of assessing over-expression of this protein is by IHC (immunohistochemistry); if this gives a result of 0 or 1+, then the tumor is assumed to be HER2 negative. With a result of 2+, it is borderline or equivocal,and 3+ is definitely positive. A borderline result is then retested with the more sensitive FISH (fluorescence in-situ hybridisation) test (this measures the amount of amplification of the oncogene) and is then assessed as positive or negative.It is interesting to note that IHC testing can show how much of the HER2 protein is present on the tumor cell surface, while FISH testing measures the number of copies of the HER2 gene inside each cell.
I hope this has been useful.
With love,
Sam x
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Hello everyone
Thank you for your posts. I shall be answering them later today.
I hope you all have a good week.
Best wishes
Sylvia
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Hello Michael
It was nice to hear from you. I am sure everything will gradually work out alright and step by step you will move forward. It is a good thing that you have your stepson, Alex, to help you and I am sure all this will be helping Alex.I am sure you will get inspiration as you move along as well.
Wishing you all the very best. Keep in touch and shout for help if you need it.
Sylvia0 -
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Hello linali
Thank you for your post. I do agree that with the return of the programmes you mentioned we are definitely being told to settle down for autumn. I am not actually watching any of these programmes that signal summer is over. I could not get interested in Downton Abbey. This is perhaps because I saw a lot of Upstairs Downstairs many years ago and think it was much better. I am just so glad that I did not live in the first part of the twentieth century. It was awful for ordinary people.I have been watching Parades End and have found it very interesting. I do like Benedict Cumberbach and think he is a marvellous actor. I really enjoyed watching him as the modern Sherlock Holmes, as well as the actor playing Moriarty!!! I have been watching the Last Weekend, which was most intriguing. I do like dramas and anything philosophical and metaphysical. I like political and current affairs programmes. One of my favourite programmes is the Keiser Report on RT.
Are you suffering from lymphoedema? I did not realise this. You do need to walk around on long haul flights because of the risk of deep vein thrombosis. As for the lymphoedema, try to exercise your arms as much as possible by raising them above your head. You might want to buy a round brush, called a detox brush, in Boots and massage your affected arm with this by doing up ward strokes from the back of the hand to the top of the arm and then going across the chest.
I think it is prudent to cut down on the travelling and stay put longer. Air travel makes you very tired and dehydrated, so drink plenty of water. You will also have jet lag and that can make you exhausted.
I was interested to know that you are going to a talk at the centre on Tuesday on how to chat to people who are newly diagnosed. Let me know how that goes, because it can be very helpful on the thread. I think all doctors and nurses need a course on this! I think you have to be gentle and reassuring and get the message over that there is treatment.
We are all going to miss you on the thread for a couple of weeks, but hope that you will manage to have some relaxing and therapeutic time. Look after yourself and Damian and best wishes to both of you.
Sylvia xxxx
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Hello again linali
I just wanted to say thank you for your PM.I do hope Caroline will be OK. I picked up on her anguish as I was reading her posts. I suppose she must be recovering from surgery now. If you do get to see her sometime, give her my best wishes and tell her she is welcome to join you and Bernie on this thread. You two are such a credit and are Team Ireland!!
Fond thoughts.
Sylvia xxxx0 -
Hello sam52
Thank you for your post. I was glad to hear from you. I agree that we need to keep parathyroidism and a connection to breast cancer in the news. I agree with you that, when we go for routine blood tests with the GP, elevated serum calcium does not appear to have a follow up. They just say your calcium level is a bit high. I think that testing the parathyroid hormone level (PTH) should be part of routine blood tests. Next time I go for a blood test I am going to ask for the PTH to be tested, because we do not know what is happening in our bodies at any given time. There is also another thread on the same subject that I discovered. It is more recent but does not have many posts. It is in the forum Bone Health and Bone Loss and the thread is Hyperparathyroidism and High Calcium levels. We have both posted on that as well. We need to pop in regularly to keep these two threads at the top of the active topics.Thank you for your information about HER2. I do remember what you said in a previous post and I have also researched it. I was just wondering whether the diagnosis can be a bit subjective according to different breast consultants and oncologists. This seems to be the way with oestrogen. My consultant said 5% progesterone was negligible and made me PR- and yet there are women with 3% ER who are on Tamoxifen. I suppose this could be because oestrogen is considered the villain and progesterone is said to be protective.
As always, thank you for your informative post.
I was having a look at some of the books at the top of the Booker Prize list. I saw the top six but really only knew Hillary Mantell and Will Self. Will you be reading any of these books? Hillary Mantell's book sounds interesting, but it might be heavy. It is certainly long and all the characters are listed at the beginning. The title is Bring up the Bodies. It is a historical novel, so I might try to read it sometime. As for Will Self, the title is Umbrella. I did not have time to read what it was about. I do like Will Self when I see him on the television or listen to him on the radio.
Love
Sylvia xx0 -
Hello BernieEllen
Thank you for the joke. It made me laugh and I am sure it has made everyone on the thread laugh.I hope all is well with you and that you had a good weekend.
Best wishes
Sylvia xxxx0 -
Thank you sylvia. I had a smashing time - had a fall -broke my nose and cracked my cheekbone.
Ouch.
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Hello BernieEllen
Whatever have you been up to? I do hope you will make a speedy recovery. I do admire that in all of this you still maintain your sense of humour.Best wishes
Sylvia xx0 -
Hello sam52
I thought you would like to know that there has already been a post on the High Calcium thread. I found it interesting. If you have the time, have a look at it and see what you think.I hope everything is fine at school.
What do you think about the GCSE replacement plans?
Love
Sylvia xxxx0 -
Hi Sylvia,
Thanks so much for posting the info re diet. Sometimes our US friends talk about certain foods etc and food chains that I have never heard of so it is good to be in contact with somebody closer to home (I live in Ireland). I am due a baby in 7 wks time and because of a tummy bug a couple of weeks ago I lost some weight so I have had to eat a full fat (full fat milk, ice cream, butter in my dinner etc) diet which I never would have indulged in before to gain weight, which I think I have done. I love nuts but am cautious of eating them during pregnancy but was so interested in reading what you were saying about meat etc. I am a meat eater and while I don't over indulge in eating meat, I do enjoy the odd steak. Do you take vitamins to substitute for not eating meat? How do you cook your fish meals? With olive oil or no oil? As soon as my baby is born I will be going back to my healthy diet. Having surgery next Monday (MX with axillary node dissection - ick).
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Hello Mumtobe
Thank you for your post. I was so sorry to read about all you are going through and I do hope that all will go well. I am sorry that you have to be on these threads, but I want to give you a very, very warm welcome to ours and hope that we can help and support you.We have some very nice Irish ladies on the thread and I know that people like linali and BernieEllen will support you.
It must be so difficult dealing with having a baby and being diagnosed with breast cancer and going through treatment. At least you have some of the chemo behind you and doxorubicin and cyclophosphomide are sometimes difficult to bear. At least you will soon have your surgery and have a bit of time to recover before your baby is born. I was sorry to hear that you had caught a tummy bug and lost weight, so were put on a full fat diet. It seems nutritionists at the hospital are very fond of telling people to eat full fat dairy products. I was told to do this when I was having chemotherapy but I ignored this advice as my consultant breast surgeon had already told me that she thought dairy products were connected to the development of breast cancer because of their insulin growth factor hormones! I have never consumed much in the way of dairy products anyway, but apparently it only takes a little. Meat and poultry also have growth hormones.
Of course breast cancer can make you lose weight and with a tummy bug on top of this it is not surprising you have lost weight. It is true also that when going through chemotherapy and cancer treatment, your immune system is suppressed and you are very vulnerable to picking up infections. I was told to avoid crowded places and be careful not to be near anyone with infectious diseases. With your baby due I would think you have to be extra careful.
I was glad to know that you found some of the nutritional information helpful. I have always been interested in nutrition and the women that have posted on this thread have all seemed to be interested in nutrition and healthy eating. In the past we have all discussed what we eat. We all have variations in our diet. If you want to eat meat and enjoy it I would continue if I were you, especially at the moment. I think that moderation in everything is sensible and that a little of what you fancy does you good. I do not take any vitamins to substitute for not eating meat or poultry for that matter, as I do not think meat and poultry are necessary to everyday eating. In the west there is too much emphasis on meat, poultry and dairy products. I take a multivitamin every other day. I think it is important to have a lot of fruit and vegetables, some fish if you like it, and some grains, beans, pulses, nuts and seeds. I realise you have to be careful with nuts because some people are allergic to them.
You asked how I cooked my fish. I usually buy a mixture of cod, haddock, and wild salmon. I poach these in a little water and they cook very quickly. I usually add some lemon juice if I have any. If you want, you could drain off the water, add a little olive oil and pan fry for a minute or so. I sometimes have a tuna steak, poach and then pan fry. I sometimes put a spoonful of hummous over it and often have some fried (in olive oil) tomatoes as flavour. I serve this with a mixture of green and root vegetables, sometimes with a few kidney beans. We are told to have a rainbow of colours for a healthy diet. I cook most of my vegetables in a pressure cooker. I buy organic products if I can.
I do hope some of this helps.
I do hope everything goes well on Monday September 24th with your mastectomy and axillary node dissection. I shall be thinking of you.
I spent five days in hospital for the same surgery on my right breast. Do not be afraid of the surgery. It is straightforward and you should make a rapid recovery.
I was wondering what kind of breast cancer you have been diagnosed with. Is it invasive ductal carcinoma? Is it hormonal or non-hormonal?
Do you know the sex of your baby and is this your first one?
Keep looking forward. You will get through this. I do hope you have a lot of support at home. I hope you will post again and let us help you through this. By the way, you can get mouth products for sore mouths. The brand is Biotene and you can find it in all pharmacies. You are usually advised not to have any dental treatment during cancer treatment because of the risk of infection etc.
Thinking of you and wishing you all the very best.
Sylvia0
