Calling all triple negative breast cancer patients in the UK
Comments
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hi sue
So glad your mammogram was normal it really is a relief isn't it, I hope your daughters results are just as good.
Good luck with your kidney exploratory op on Monday I'm sure you'll be fine with the anaesthetic and at least it might give you some answers,
I'm not to far from you in liverpool just outside of the city centre
Take care
Gill
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Hello Suewirral,
Thank you for your latest posts and I am glad to know that we can be of some help. I understand now why the scans for your daughter were inconclusive.
I am so glad to know that your mammogram was normal and I do understand that feeling of relief and I am sure everyone else on the thread can identify with that feeling.
I do hope you are feeling a bit better and that you are keeping busy to make the time go quickly. We shall all be thinking of you on Monday.
Do you have any hobbies or things that you do for relaxation?
Sending all my love.
Sylvia xxxx
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Hello Jackpot (Gill),
I can understand why you decided not to have your operation on December 15th. When it comes to a choice between an operation and John Bishop, there is no contest!! You have definitely got something to look forward to on December 18th, so focus your mind on that.
I can understand that you have opted for a total hysterectomy and it should give you peace of mind. Will you be having minimally invasive surgery or does a total hysterectomy require full surgery? I am sure you will cope with the early menopause that it will bring and we all know to stay away from HRT.
I was glad to know that your sons are fine and I can understand how concerned they have been for you. You are right that all these things are difficult for families and we can forget the stress and fear that they can go through.
It is great news that your niece is doing well, that she is still in remission and living life to the full. We must take full advantage of every day.
I was so sorry to read that Lulu is not doing so well and that she has had further spread. Metastatic breast cancer is a real challenge and some kind of breakthrough in treatment is needed, either to prevent it or to stop the chemotherapy treatment having such a devastating effect on people. Yesterday I was asking one of my friends how one of his friends is doing with metastatic breast cancer. She is just forty and was diagnosed with hormonal breast cancer, which I think was triple positive. She decided to have a baby while going through treatment. The cancer metastasised and she has survived so far on various drugs and trials but he tells me she is not doing so well now. It is her young son that keeps her motivated. It is all so tragic.
Thinking of you and sending fondest thoughts.
Please keep in touch and talk about whatever you like.
Sylvia xxxx
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Hello marymargarethope,
I was just wondering if you got to see Dr Hembry and how things went.
Hello breastcancerhusband,
I was wondering how the week was going for you and your wife. I was also wondering whether you ever look at Cancer Active led by Chris Woollams, a microbiologist. It has some very interesting stuff on it. You can sign up for his e-mail. The latest one is about taking control of your cancer treatment programme. I am still trying to find the time to do a detailed post about this as there is information about TNBC.
Hello Michael,
I was wondering whether you saw the article in the i paper on Monday entitled NHS tests are 'missing women with cancer genes'. If so I would be interested to know what you think about it.
In yesterdays i paper and others, on the front page the headlines were all about a £125 test that you can get that predicts possible future illnesses. I wonder about this. Will it add more anxiety?
What do you think about the latest headlines concerning diabetes 2, premature ageing of the brain and more probability of dementia?
I hope all of you are having a satisfying week.
Best wishes to everybody.
Sylvia
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hi Sylvia
Regarding the surgery I'm having, my surgeon said he was going to try to do laparoscopy hysterectomy which is several keyhole incisions and is less invasive and a quicker recovery time but can sometimes mean they have to cut bits up and bring them out in pieces which he doesn't want to do because of my history just in case there is anything sinister there that they havnt seen yet, so if he can't do it in whole pieces he's going to change to an abdominal hysterectomy during surgery....I'm ok with that
Take care
Gill
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Hi Sylvia,
I have been up since 5 30am for two reasons really. Firstly, I had the pain injections on Thursday and I think that it is a case of getting worse before it gets better. The consultant located the nerve by an electric current and this can make the area painful. The pain nurse rang yesterday and will ring again in another week to check me out. The overall experience was positive and relaxed .....we all ended up singing Let it Go.... from Frozen in the theatre.
The second reason is because I am trying to sort out my medical card and angry thoughts go through my head and so it is best to get up.I am getting no where and the medical card department insist that they notified me in July 2013 and gave me the right to appeal. Needless to say I received no letter and it is a case of my word against theirs. I will try one last time but it is frustrating that I am more or less being made out to be a liar.
It is so encouraging that it will be your 10 year anniversary , it will be 5 for me in 2015 and I remember thinking if only I can get to 5 . It seemed so far away.
Hi Suewirral,
What a whirlwind rollercoaster but great news about your mammo. It must be difficult balancing everything. Will be thinking of you and your daughter on the 24th.
Counselling may not be for everyone but I have found that it gives me a safe place to lay everything out , look at it talk through it and find ways of dealing with all the things that threaten to overwhelm me. As well as our own fears we have to reassure and support those close to us when things go wrong or they are scared and worried. One thing that counselling made me see, it did take a while and that I was no use to anyone least of all myself if I didn't look after myself especially mentally. Easier said than done but counselling and talking to someone neutral helped.
Dealing with one thing at a time helps and so if both Kerry and Leigh are having difficulties at the same time which seems to happen often I am so lucky that my husband takes one and I the other. Any way counselling is worth a try, it gave me space to breathe and took the panic away for a while.
Good luck with the op on Monday
Hi Carolben, so good to hear from you.I hope that the Summer will bring you warmth and some strength.
Hi Jackpot,
I love John Bishop and just the man to take your mind away from everything for a while. Enjoy. Good luck with the hysterectomy and hope that it will bring the beginning of a good year.
Maryna/8
How do you find the acupuncture? I have gone down the traditional medical route but up to now it hasn't been too successful and I would like to try something else. The pain isn't 100% diagnosed but an MRI and the bone scan reassured me that it wasn't cancer back.I do not take the strong medication that was prescribed as it made me feel absent from the world!
I go to Tai Chi and the teacher is also a Reiki master. If I have pain during the class he does reiki on the area and it helps. Hope that all goes well for you.
It is still dark here but it looks like it will be a cold but bright day. I love those days.
This year I have resorted to doing a lot of Christmas shopping on line and I must say that I like to see all the parcels arriving.
Our Christmas party is on at the centre this Sunday but as we have a meeting with Leigh's aspergers team on Monday I wont be indulging and have volunteered to wash up etc. It is always a day of mixed feelings, so happy for those of us that are surviving but sad and fond memories of those that are no longer here.
Kerry is now 22 weeks and we will tick off the weeks till April. I dont want to buy anything this time until after the baby is born but I couldnt resist a pair of handknit bootees at our sale of work.
Have a good weekend .
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Hello Jackpot (Gill),
Thank you for your latest post with that information. We all hope everything goes well with that surgery after Christmas.
Fond thoughts.
Sylvia xxxx
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Hello linali (Lindsay),
I do hope that everything will go well for you after your pain injection. I was glad to know that the overall experience was positive and relaxed for you.
I do hope, as well, that you get everything sorted out with your medical card. Bureaucracy can be so frustrating. If that were me, I would be asking for them to send me a copy of the notification that they supposedly sent you in July 2013. The least they could have done if they did send you a letter was to write another one asking if you had received it and telling you that you had the right to appeal. Do not let them win this one.
I hope all goes well at your Christmas party at the centre on Sunday.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I thought I would post the headings of my latest e-mail from Chris Woollams at Cancer Active. I would be interested to know if any of you receive this e-mail, what you think of it and whether you read the information on line.
The main heading was 'Take control of your cancer treatment'. The following are the rest of the categories and I shall leave it up to you to pursue them or not.
1. Fasting strengthens the immune system.
Fasting improves the immune system.
Ketogenic Diet.
Fasting, calorie restriction and cancer.
2. Epigenetics, natural compounds and Breast Cancer.
This is well worth reading because it mentions that the article starts with four bioactive compounds that can fight triple negative breast cancer. It mentions another ten bioactive compounds that both protect and correct all breast cancers.
Epigenetics and breast cancer.
Epigenetic compounds – top 25.
Epigenetic Rules. OK? (Revised)
Rainbow diet.
3. Chemotherapy helps cause cancer to return.
Chemotherapy helps CAUSE cancer recurrence.
4. Why you should think seriously about Hyperbaric oxygen.
This is about the belief that this helps everyone having radiotherapy and chemotherapy.
Hyperbaric oxygen therapy (revised).
5. Alternative therapies, anyone?
I shall leave you to look up the details.
6. Everything you need to know to help you beat cancer.
This is the book written by Chris Woollams.
7. Cannabis killed my stage 4 cancer.
I shall leave you to look up the details.
8. B17; one small step for mankind.
I found this part interesting as it sorts out the muddle about B17. We have B17 and the synthetic form of B17 is Laetrile, about which there is a lot of controversy and according to this article it is not going to be approved.
It goes on to explain that the natural form of B17 is amygdalin. Apparently there is new research about this and it is said to kill cancer cells. As you know, bitter apricot kernels are a natural source.
Natural B17 and anti-cancer benefits.
B17 Separating Myth from Reality.
9. Consuming sugar CAUSES cancer.
Sugar causes cancer: damages immune system too.
10. Prostate cancer recurrence linked to bad cholesterol.
Prostate cancer recurrence and triglycerides.
Researchers have shown that your prostate cancer is more likely to come back if your triglyceride levels are high.
11. Personal Prescriptions.
This is all about how Chris Woollams can help you with your cancer treatment, talking about your current treatment and how you can improve it etc. I shall leave you to look up the details about this.
I was interested to read about one lady mentioned who was very ill on her paclitaxel (Taxol). It turned out that her doctor had not told her not to touch grapefruit while on it.
Personal prescriptions.
12. How to increase your survival odds.
Exercise and better chemo results.
Vitamin D to be used in hormone therapy for breast cancer.
Vitamin D makes drugs work better – pancreatic cancer.
Frequent Bowl Movements lower Breast cancer risk.
Please read number 2 at least, because it is all about triple negative breast cancer.
It states that the science of EPIGENITICS has identified real bioactive natural compounds as treatments options for women with TNBC and breast cancer in general. It points out that it does not believe there is one cure for cancer. I shall leave you to read it and say what you think. Among other things mentioned as helping are vitamin D, curcumin, carotenoids, blueberries, and indol 3 carbinol.
There is mention of Cancer Watch and its research over the years in all of these things. Remember, Cancer Watch is the research part of Cancer Active.
What caught my eye reading through this section under 2 was that two studies show that vitamin D can correct TNBC damage.
That is about it for now.
Wishing everyone a good weekend.
Sylvia
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Hello everyone,
I was just wondering whether any of you saw the article under Health in the i paper this past week. It was entitled 'NHS tests are "missing women with cancer genes"' by Adam Lusher. The article starts as follows.
"Half of women carrying 'cancer genes' may be being missed by current NHS testing practices, according to new research...."
"The cancer charity Eve Appeal said today that more lives could be saved if the NHS tested all women for BRCA gene mutations, following a study which found just over half of those with them were picked up by blood testing, but missed by the normal practice of taking a family history."
I have long said on this thread that we should all be tested.
There are a lot more details if you want to find this article on line. It does say that women with a mutated BRCA1 or BRCA2 gene are thought to have a 15 to 45% chance of getting ovarian cancer and a 45 to 65% risk of developing breast cancer.
At present, under current regulations, those without a strong family history of cancer or of having the variant genes are not eligible for a free NHS genetic test.
Also in this article was data published by US scientists from a pilot study suggesting that an experimental breast cancer vaccine is capable of slowing the progression of the disease. It says that of 14 women with metastatic or spreading breast cancer, who received the vaccine, half showed no sign of tumour growth one year after treatment.
Scientists at Washington University School of Medicine now plan to follow their small pilot trial with a larger study of newly diagnosed patients.
Finally, for any men reading the thread, the antiretroviral drug maraviroc used to treat HIV infection, can dramatically curb the spread of prostate cancer, research has shown.
I hope you find this interesting.
Best wishes to all.
Sylvia
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Hi All
Hope everyone is well. Just a quick one to say hello. I'll have to catch up with all the posts over the weekend and post properly next week. Its been a manic week.
Our little one is down with chicken pox. All we need! my wife isn't sure if she's had it either which opens up a whole can of worms.
Thanks for all your info Sylvia - I'll have a good read! Your oncologist will probably know nothing about the 10 breast cancer clusters. It will take a detailed gene screen to determine. If you are interested, I might be able to arrange this, although it's not an easy process! I would like to get hold of some of your blood though!
I'll post about this next week, but do Google the mammoglobin A vaccine trial or type "mammoglobin A" into pubmed
Sue - I'm thinking of you and will get back to you RE: taxanes. I've spoken to a very good oncologist here in London.
Love and prayers and positive thoughts to all of you.
Tom
xxxxx
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Just a quick question -- what does that mean where it says "It points out that it does not believe there is one cure for cancer"
Is his belief that there is not "any" cure for cancer or that there is "more than one cure for cancer". I wasn't sure by the way the sentence was worded.
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That Indole-3-Carbinol seems really interesting and looks to have great benefits, other than the one derogatory sentence at the end of this article, regarding possible promotion of tumor growth in animals exposed to carcinogens. It sounds really good as data from a clinical trial shows it's effective in treatment of precancerous cervical dysplasia!
This information below is from the Memorial Sloan Kettering Website. Here is the actual link: http://www.mskcc.org/cancer-care/herb/indole-3-carbinol
"Clinical Summary"
"Indole-3-Carbinol (I3C) is a compound found in cruciferous vegetables including broccoli, cabbage and cauliflower. Because diets high in these vegetables retard cancer growth in animals, I3C is thought to be a good candidate for cancer prevention (1). Several studies demonstrate that it can cause cell cycle arrest (6)(7) and apoptosis (8)(9)(10)(11)(12) in cancer cell lines, has antiangiogenic activity (22)and inhibits tobacco smoke-induced lung adenocarcinoma in mice (23). Studies also indicate that I3C enhances efficacy of gemcitabine (24) and acts synergistically with bortezomib (25) in vitro.
Data from clinical trials show that I3C is effective in treatment of precancerous cervical dysplasia (2) and vulvar intraepithelial neoplasia (3). In premenopausal women, a supplement containing I3C and 7-hydroxymatairesinol significantly increased the urinary 2:16-hydroxyestrone ratio, a known biomarker for the reduction of breast cancer risk (4).
I3C also stimulates detoxification enzymes in the gut and liver (5).
I3C is generally well tolerated when taken orally. But it may promote tumor growth in animals that have been exposed to carcinogens (13). Because it induces cytochrome P450 enzymes (14), I3C may interact with several medications."0 -
Hello Tom and InspiredbyDolce,
Thank you for your posts. I shall reply later on today when I have more time.
I hope everyone is having a good weekend.
Best wishes.
Sylvia
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Thanks Tom thats kind of you. I wonder though is it too late for me to have a taxane now that its 12 months since my diagnosis? It will be interesting to hear what the oncologist has to say
Sue x
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Hi all, well my expolratory op looms! I am having a camera inserted into my bladder which can look into the ureter ( the tube that comes down from the kidney) to see if the urologist can see any problems there. I must admit the pain I have had has reduced significantly. I only get the occasional ache or twinge but when my urine is dipsticked there is always a trace of bloood which I don't like. So I am going to have this procedure even though i am frightened of having the GA. I suppose i know I won't have peace of mind until all stones are left unturned!
My daughter will be having the mri of her breasts on Tuesday and due to my having my procedure the day before I won't be able to take her. I do feel bad about that but it can't be helped.He friend will go with her.
I hate to moan (but here goes) the past 18 months have been poo what with Colin's death and the tn bc and my daughter being practically jilted and my kidneys and now my daughter having this scare. Added to this my daughter's very good friend committed suicide this week; we are devastated.
However I did get a clear mammogram so some things are good. Its hard to be balanced at times.
Love to you all boys and girls and keep putting one foot in front of the other. I hope your wife is OK Tom what with the children getting chicken pox in the midst of her chemo. If she is immune she should be hopefully ok though
Sue x
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Hello Tom,
I was sorry to know you have been having such a manic week and I do hope you will manage to have a bit of relaxation this week.
I was sorry to read that your daughter was down with chickenpox and I hope she will make good progress quickly. I do hope your wife will not catch it, given that on chemotherapy she will be very vulnerable to picking up anything. I do hope she has already had it.
Thank you for your appreciation of the information I have posted. I do try to make the thread as interesting and informative as I can. I do hope you find the time to read it all and welcome any comments.
I am not sure, nearly ten years on, whether I would like detailed information about my blood. If there were anything showing up it would open up a whole new load of anxiety. I do think regular routine blood test screening for signs of possible developing cancer would be a good idea, instead of or in addition to mammograms. I keep reading a lot of negative things about mammograms and how they do not save lives. I am not sure what to think about this, but I do have concern about all these regular mammograms and exposure to radiation and wonder whether they are picking up small things that might not have come to anything.
I have given blood in the past. I remember when I first started my chemotherapy that there was a nurse present getting patients to fill in forms. It was all about answering questions to what was stated to be common risk factors for developing breast cancer. You had to say at what age you started your periods, what age you had your menopause if applicable, whether you had any children, whether you had your children at a late age, and close family relatives with cancer. The nurse took a blood sample and said it would be sent to some research place in London, the name of which I cannot remember. She also said I would not hear back from them.
Later on I asked for genetic testing, because of lots of cancer in the family as a whole, and was told that I would not have faulty genes, otherwise I would have developed cancer at a much younger age, as would family members. I did push for an appointment with a genetic nurse, had a forty-five minute interview, answered a lot of questions and again the nurse took a blood sample which, she said would be stored at the hospital for future reference if needed. I left it at that.
Back in 2005 I was not offered a copy of my pathology report, but I think patients are offered this now. I was just told I had an excellent pathology report and that there was no visible evidence of disease. I do not think I would like to see it now!
Looking forward from you.
Fond thoughts.
Sylvia
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Hello InspiredbyDolce (Debra),
Thank you for your post. To answer your question it means that the person writing the article does not believe that there is or will be one magic bullet to cure cancer. If there is a cure for cancer, it will be a multifaceted one. I think this makes sense given that there are over two hundred different cancers and all cancers are individual.
As I mentioned in one posting, there is some kind of vaccine that could be going into more trials, but I do have doubts about a vaccine, but that is my own personal view.
I think that cancer is a lifestyle thing and the answer to it all is in big efforts to prevent it, rather than throwing drugs at it once it has developed. These drugs are lethal and have so many side effects, but they keep us alive.
Thank you for your information and link about Indole-3-Carbinol. It is something that has been written about for some time. I am not a great believer in supplements but prefer to get all these things from food as far as I possibly can. Broccoli, cabbage, Brussels sprouts, cauliflower, kale etc. are part of my everyday diet and I get organic when I can.
I think we all know that synthetic versions of natural substances are not quite the same and can have side effects.
I follow more or less the same diet as you have in your details. I eat lots of fruit and vegetables, keep sugar to a minimum, do not eat any dairy products or meat, for grains I have mainly wholegrain Basmati rice, some beans, mainly chick peas and red kidney beans. I think it is very important to keep the gut healthy so I eat Sojade organic plain unsweetened soy yoghurt with live cultures regularly as a pro-biotic and some soy yoghurt plain unsweetened enriched with calcium. I also drink every day Alpro unsweetened plain almond milk enriched with calcium. I also put a serving of Biona sauerkraut on my main meal as a pro-biotic. You also need pre-biotics to help with the pro-biotics and onions, leeks and garlic are a good source of these. Finally, I always have some seafood for a healthy thyroid, mainly North Atlantic prawns.
I do not take metformin or anything else, except some vitamins. I do eat bitter apricot kernels and have done so ever since diagnosis.
I keep active in my every day life and try to integrate walking into that. I do not do any special exercise, but do a lot of gardening. I think healthy eating, keeping mentally and physically active and trying to avoid environmental toxins and negative stress are the ingredients for good health. There is no guarantee, but we can only try.
Hoping all is well with you.
Fond thoughts.
Sylvia xxxx
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Hello Suewirral
I have not forgotten your post. I am just going to take a break and shall answer later.
Sylvia xxxx
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Hello Suewirral (Sue),
I am so sorry that you are having such a difficult time. They do say it never rains but it pours!
I do hope all goes well with your operation on December 8th. Just keep focussing on Tuesday and telling yourself it will all be over by then. We shall all be thinking of you. I know how anxious I felt about going into hospital for five days when I had my mastectomy. A friend of mine told me to stop worrying as once I had had the anaesthetic injection I would not remember anything until I was awake again. It was the worst part of my treatment because I had to be in the hospital. I was fine with the rest of the treatment because I knew I would be coming back home each time.
I am sure your daughter will be just fine going for her MRI scan with a friend, so just concentrate on getting through your surgery.
We can all understand what you have been going through these past eighteen months. It is just unbelievable. You must be a very strong woman to have got yourself through all of this and you must miss Colin terribly.
It must have been so awful for your daughter to have been jilted just before her wedding. That kind of stress will have taken its toll on her. Perhaps it was all for the best and there is a worthier person out there waiting for your daughter.
What a shock for your daughter to have her best friend committing suicide this week and I can understand that you are both devastated. Something awful must have happened for her to do this.
Wishing you and your daughter all the very best for this coming week. Take care.
Love.
Sylvia xxxx
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Hello InspiredbyDolce,
I forgot to mention when I was posting about what I eat that I also eat plenty of nuts and seeds on a daily basis, especially raw almonds, Brazils and walnuts, not to mention pumpkin seeds, sunflower seeds, linseeds (brown and golden) and sesame seeds. I eat the nuts as they are, but I grind the seeds in a special coffee grinder that I keep for them and I eat them with yoghurt.
At this time of year I am eating plenty of cranberries. They belong to the same species as blueberries. I cook them for about five minutes and eat them with yoghurt. I love the sour taste.
Best wishes.
Sylvia xxxx
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Hello Tom,
I forgot to mention that other risk factors that came up and are well known are birth control pills and HRT.
Hope you are having a good Sunday.
Sylvia
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Hello everyone,
I thought the following would be of interest to you.
Two studies show the importance of vitamin D with triple negative breast cancer.
"Researchers, led by Susana Gonzalo, PhD., assistant professor of biochemistry and molecular biology at Saint Louis University, studying the BRCA1 gene mutation, have identified the pathway involved. This frequently leads to triple negative breast cancer (TNBC), an aggressive form of the disease. When the pathway is active, tumours grow rapidly. However, the researchers showed that vitamin D could block the pathway.
This could be extremely important as currently chemotherapy options for TNBC are poor and younger women tend to develop the disease.
Clinical trials are now planned.
Importantly, a second completely unrelated study seems to back up these findings. According yo a study in the Journal of Cellular Biology, researchers found that a protein (53 BPI) normally inhibits cancer cell growth, but a compound called cathapsin L can invade the cell's nucleus and block 53 BPI causing uncontrolled cell division and cancer cell growth. Apparently vitamin D blocks cathapsin L. Again, the researchers were studying TNBC.
Vitamin D has previously been shown in research in Cancer Watch, both to prevent AND correct cancer. It is not really a vitamin, but actually works like a hormone and has proven epigenetic benefits - it can reverse genetic blockages caused by methyl bonds erroneously formed due to damage through a poor diet, environmental toxins, stress, or hormones such as oestrogen. Indeed, vitamin D (along with curcumin) has been described as the ultimate epigenetic."
That is the end of the article, but it does remind me of what one of my medical team told me when I was asking about what could have caused my breast cancer. She said that it could have been caused by p53 gene being somehow closed down through a process of methylation and thus allowing tumour cells to proliferate. It was quite a few years ago that this was mentioned to me.
I hope you will find this interesting.
I have always thought that my breast cancer was caused through negative stress and the fact that I strained my right arm not long before the tumour appeared.
Wishing you all the best and hoping you are having a good Sunday.
Sylvia
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Hi all, well I had my procedure (a ureteroscopy) yesterday and was in a fair bit of pain afterwards but was given some pethidine which did the trick! The best bit was being told that the surgeon did not see anything nasty and I am discharged from urology. My pain has reduced significantly over the past month or so and I now think I have done all I can to sort it.
My poor daughter has gone for her breast mri alone today, she chose not to take a friend but just rang me from the hospital and sounded distressed. I can't drive her due to having had a general anaesthetic less than 24 hours ago and truth be told still feel a bit woozy and have to go to the loo every hour or so after the bladder/kidney procedure!
Hey ho this too will pass. Tom I hope your wife is doing OK and the children's chicken pox is not too serious for them,it is a miserable illness from what I can remember when my children were small.
Thanks for your lovely support Sylvia, you really are our rock! I think of the forum when I am down and just knowing you are all there is a help
Sue xx
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Hello All
Hope everyone is ok.
Sue - gald to hear your op went well. Fingers crossed for your daughter.
My little one is ok, covered in spots, but otherwise pretty much normal. Luckly my wife has had chicken pox, so no problems (hopefully) for her or baby).
My wife is having a few bad days though. She had loads planned for the weekend, but with the wee one covered in spots we couldn't do any of it. She has her second cycle of FEC tomorrow so was using this as a healthy weekend. Its upset her loads not to go out, and of course there is the worry of chemo approaching. Plus her hair has now started to fall out. I guess you have all been there and know how this feels. I wish I could do something to take it all away from her. Guess all I can do is just be there to keep her smiling, lots of hugs and love and plenty of drinks!
Good stuff on Vit D - As soon as baby is born, I'll be getting her Vit D levels tested and supplemented. No one knows the effects of higher vit D on pregnancy so can't do much till then.
Here is a link for the paper I mentioned - http://www.ncbi.nlm.nih.gov/pubmed/25451106
Best wishes to all
Tom
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Hello Suewirral,
I was glad to know that your procedure is now behind you and that the surgeon told you that he did not find anything nasty. It must be a relief to have been discharged from urology. It must be a relief to be free of pain.
As for your daughter, I can understand the stress that she is going through but at least she can now tell herself that the MRI scan is behind her. It was very brave of her to go alone but she managed it. I have never had an MRI scan and I do not like the sound of it. I think I would find it too claustrophobic and too noisy. I do hope she has good news from this scan. Be sure to let us know.
I do hope you have now recovered from the anaesthetic and I think you were right not to risk driving a car so soon afterwards. Take it easy for a few days as anaesthetic does take its toll on your body and you need time to recover.
I hope you and your daughter can find something relaxing to do while you wait for the MRI results.
I am so glad to know that you have found a place here where you feel you can express how you are feeling and get some comfort from it. Please come here as often as you like.
What are you planning for Christmas? We tend just to be quietly on our own as we do not have much in the way of family. I also feel that Christmas has become too commercialised and that we need to think of all those going through hardship and illness. I think it is dreadful that there is so much poverty in this rich country of ours. I must say I do not really understand when we are told we are rich when at the same time we are told about the debt, £1.4 trillion and the deficit is £92 billion!!! The only people that are rich must be the 1% that own most of the wealth.
I hope you can find something to make you and your daughter laugh. I sometimes watch Not Going Out on Friday evening and that can make me laugh, although I must admit that on the television I watch mainly news programmes and current affairs.
Thinking of you and your daughter and sending fond thoughts your way. I do hope you are not too badly affected by the nasty storms.
Love.
Sylvia xxxx
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Hello Tom,
I was really glad to know that your little daughter is doing alright with her chickenpox and I do wish her better. It must be a huge relief to know that your wife has had chickenpox so that she should be fine. It just shows you how important it is to know your family history and family illnesses. I think it is so important to question family members while they are alive. I know bits and pieces of my family history but there is so much more that I would have liked to know, especially illnesses.
Please tell your wife that she must rest as much as she can and not expect to be able to do all the things she might have before chemotherapy. The secret is to get plenty of rest, to drink plenty of water or warm herbal teas and to keep looking forward.
I do hope that everything ha gone well with her second session of chemotherapy FEC. I do hope she will not be too distressed at the loss of hair. I found that I needed to wear my wig when I went for the second session of chemotherapy EC. I found that having a wig made all the difference and I wore it all the time when I went to the hospital or when I was going outside. Wigs look very natural and my friends thought I had not lost my hair. I could not have got through the chemotherapy without a wig. I know some women wear scarves and some just go out bald, but I could not done either. When I was at home I had a couple of elegant French style turbans and they were useful in bed at night because, without your hair, you can feel the cold.
I assume she does know about how you can ask for a cold cap during chemotherapy which some women do opt for and apparently it does prevent hair loss. I asked my oncologist about it at the time but she said she was against it because of the risk of infection. I do not know if nearly ten years on that I still her opinion.
All you can do is be there for her and reassure and comfort her as much as you can when she has low moments.
I was glad you found the information on vitamin D interesting and I think it will be useful for your wife to have her vitamin D tested when she can. I thought that pregnant women were supposed to take vitamin D and iron. I think that it should be a routine thing at our local surgeries. I had to get mine done at the hospital as a special request. I do eat lots of fish and take vitamin D soft gel capsules every day (Solgar). I was surprised when my consultant sent the results back to me and said that the person who did the test had asked her to congratulate me on my excellent level of vitamin D. In a country like ours, I think we need to take vitamin D supplements especially during the autumn and winter when we do not get exposed to enough sunshine.
I was interested in the link that you sent because it refers to the same research about which I posted on December 5th at 3:54 after finding an article in the i paper. Your link must refer to the same research as it mentions the 14 people taking part in the small trial. It is interesting that it is designed for patients with stable metastatic breast cancer. This could be of interest perhaps to our much loved Carolben, whose breast cancer came back and spread and who is going through treatment for metastatic breast cancer. Let us hope that the MAM-A DNA vaccine will continue into bigger trials. I noticed that the link is PubMed which is really for medical people, so some of it is quite technical but you can get the gist of it if you read it carefully.
It is something which we should keep an eye on.
Sending fond thoughts your way to you and your wife. I bet you are looking forward to the Christmas break from work.
Sylvia
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Hi Sylvia, thanks for posting your diet. I will reread and see if I'm doing everything you are. Where do you get your nuts/seeds from? Now, with eating those every day do you end up consuming a lot of fat grams? Or do you just have a 1 or 2 of each kind. Brazil nuts have selenium, and 1 brazil nut gives you the daily amount needed for selenium. I too get these and buy them organic.
Oh, I was stopping in to let you know that there have been some new links posted on the TNBC forums and some great information. Look at JenJenL's post about Dr. Soon-Shiong, whose interview on 60 minutes with Dr. Sanjay Gupta is a link she posted. It was a very riveting interview and is 13 minutes. Dr. Soon-Shion has funded cancer research with over $1 billion of his own money - he invented the cancer drug Abraxane and has a few theories about cancer and has developed some very complex systems and processes to advance knowledge and research towards cancer.
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Hi everyone just a quick post to let you know my lovely news. We received a phone all to say that my daughter's breast mri shows no indication of malignancy. This along with her mammogram and ultrasound is fab news for us.
She is seeing her surgeon on 24th December as planned and I have a feeling she will want to remove the lump anyway but for today this is a happy happy day
Sue xx
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hi sue
That's great news xx
Gill
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