Calling all triple negative breast cancer patients in the UK
Comments
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Hello Carolben and sam52.
Thank you for your posts. i just wanted to let you know I shall be responding later today when I have more time.
Thinking of you Carolben today.
Best wishes.
Sylvia xxxx
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Hello Carolben.
Thank you for your post. I am thinking of you today and wondering how you are getting on.
I was glad to know that your sister will be with you on Sunday and that she will be with you on Monday when you see your oncologist to discuss results and treatment options.
You seem to have lost a lot of weight after finishing treatment, especially if you were not overweight, and were back to your normal eating. Did you mention this to your oncologist, as a lot of weight loss without an explanation should have been a warning that something was not quite right?
I can understand that juicing is easy for you and I cannot see that veggie juices (but perhaps not carbohydrate ones) will do you any harm. If that were me, I would be choosing watercress, spinach, broccoli, greens etc. and mix them with tomatoes, cucumbers and avocados.
Please let us know how you get on today.
Love.
Sylvia xxxx
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Hello sam52.
It was so nice to hear from you. I hope everything went well with your rheumatology appointment yesterday. I understand that fibromyalgia is a very painful condition.
Well done for asking your rheumatology consultant to organise a DEXA scan. Well done for getting a PTH test added to the blood test. I shall be very interested to know the results of your DEXA scan and the parathyroid hormone level in your blood test.
I have still not heard anything about my DEXA scan. This morning I decided to telephone the Exeter Osteoporosis Service at my RD & E Hospital to find out about my DEXA scan. I was immediately told I needed another number, so I had to phone DEXA scan. After going through a lot of questions I was told they had nothing about me down for a scan! I was told to phone the secretary to my breast cancer consultant. I phoned the number on my latest letter and got the secretary to a different breast cancer consultant, so I pointed out to her that the letter I received about having ordered a DEXA scan for me had the wrong consultant's name on it and I wanted it changed! I then telephoned the secretary to my consultant and was told there was no record of a DEXA scan having been ordered. I was getting a bit fed up by now and asked her to make sure that a scan was ordered. She said she was going to sort it out.
All this makes me very anxious about how bureaucratic the NHS is and how muddled. You have to be constantly on the look out for mistakes.
As for the PTH, I do not know what to do, having been told I do not need to check. When I last saw my GP, I asked to have a full blood test and I am going to have it on Friday February 8th. I think I am going to slip in that I would like a PTH and see how it goes down. I think I shall push the nurse into doing it by saying that I feel grumpy and on edge and that could be a sign that something is wrong with my parathyroid gland. What do you think?
I can understand your frustration about getting a mammogram appointment. It looks as though what I thought might happen does happen, and that when you are discharged from the hospital you get put on a list for mass screening and you then get called up for that. I can understand your reluctance to accept the mass screening service and your preference to stay with the hospital. Everything is so bureaucratic these days and once you are not involved with the hospital you have to go back to your GP and try to get a referral to the hospital. The trouble is GPs do not like to refer you to the hospital and I wonder if they get points for this. I would try to get your mammogram at the hospital as they have the latest equipment and can give you your results immediately. I do not know whether all mammogram equipment has been updated.
I suppose I am lucky not to have been discharged because I was told it is usual to discharge a patient from the breast cancer consultant after five years and from the oncologist after ten years. I may be staying on longer with the breast cancer consultant because of the triple negative status. It could also be because my breast cancer consultant is also my endocrinologist and deals with the osteoporosis problem. Her second in command told me that I would not be discharged if the consultant was treating me for two separate things, which she is, breast cancer and hyperparathyroidism.
I intend to stay on for as long as I can.
Fight the good fight for the mammogram!
It looks as though the weather in London is as bad as here in Exmouth. It has been raining for two days now, no sun and high winds. I find it very depressing.
I am trying to catch up on some reading but find I am always short of time. I try very hard to keep the thread going to a high standard and to make it meaningful and helpful. There is so much dumbing down in our society and I do not want any part of it. Running this apartment complex also takes up a lot of my time, as I seem to be doing most of the work.
That is about all for now. Thank you for all the support you have given to Carolben. She must be going through a really stressful time.
Love.
Sylvia xxxx
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Hi Sylvia,
The veggie junk I had was a veggie kebab and a garlic chip with cheese...ahem! I'm struggling to stay away from cheese, I absolutely love it. I would sacrifice all other junk food for cheese! Am eating goats and feta cheese in small amounts....
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Carolben I am sending you the fondest thoughts and wishing you well xxx
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Hello Mumtobe (Carol).
Thank you for your post. A veggie kebab sounds interesting it does not sound like junk. If you enjoyed it with your garlic chip with cheese, then I cannot see the harm. If you enjoy cheese then eat it, in moderation. I do not think it would strictly be classed as junk food and a little of what you fancy does you good. Goats cheese is probably better for you. There are quite a few different goats cheeses in our local supermarket. The best one is the goats cheese log from France. It is sold mainly at the cheese counter.
As far as feta cheese is concerned, my information is that the feta cheese that is produced within the EU is made from sheep mainly, about 70% and the rest from goats. Apparently you have to be careful with anything from outside the EU as it is made from cows milk or buffalo. You will remember I was told it is prudent to stay away from dairy products, especially from large animals, because of the growth hormones that may present a risk with the development of breast cancer. Smaller animals are apparently less problematic.
Just enjoy your food. You are under enough stress going through chemotherapy and then radiotherapy.
You might be interested in the following information that was in the January edition of the magazine What Doctors Don't Tell You.
Power foods. It is broken up into the food item, what it is good for, and the X factor.
Breakfast:
Oats,
Maple Syrup
Grapefruit
Yoghurt
Watermelon
Eggs
eg Eggs
What they do: Although they were turned into the bad boys in our obsession with keeping cholesterol down, it now appears that they are good for the heart after all, and reduce high blood pressure in particular.
X factor: Boiled and fried eggs produce peptides that are natural ACE inhibitors – a family of antihypertensive drugs that inhibits angiotensin-converting enzymes. Fried eggs are particularly effective for preventing cardiovascular disease, including hypertension.
I can post other details later for lunch, dinner, drinks and snacks. You might find these details on their website. Www.wddty.com
If you have a look at this website, you will find all kinds of information. I have just been looking at the section entitled News. There is so much on there.
Take care of yourself, Carol, and do not be too strict on yourself.
Love.
Sylvia xxxx
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hello carol & ben - hoping your doing ok, thoughts with you.
xx
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Hello Syvlvia and everyone ((((((((hugs)))))))
yesterday had results from brain scan, all good, onc thinks it may be my eyes so have appointment with optometrist tomorrow so no problems and have no excuse now why i feel brain dead sometimes.
went through all meds and supplements with onc and he said lots of things that i was in agreeance, just so good to have him on my side batting for me compared to previous onc.
urge anyone that feels that are not be treated as they think they deserve, move on and get other opinions and if your not comfortable with your onc find another one. i find even with pending tests like the brain scan im ok to go in as i have all the confidence in the world with onc even if results are bad, it makes a huge difference to my mental state.
carol - how are going with the food intake, hopefully your getting enough calories down to give you enough strength to travel this insidious journey.
mumtobe - just reminded me the other day down the beach i rarely buy junk food but was ravished and saw the kebab shop, stood there pondering for about 10 minutes then it came. had egg lettuce tomato capsicum onion and a bit of garlic dressing, it was delish. never thought of ordering from a place like that and having healthy in my mind. had pitta bread.
bernie - loved the alziemer joke -
everyone - luvs and great thoughts be with you.
today - i didnt do much - caught up with mum and dad- after lunch went for power walk - was unread, not too hot.
xxx
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Hello Liv.
Thank you for your post.
I was glad to know that you had good results from your brain scan. That is one less problem to worry about.
I do hope that all will be well with your eyes, but eyes are so important that it is good to have regular checks.
You say that sometimes you feel brain dead. You have to remember that you have been through a lot since your diagnosis in April 2012 and that you are still taking lethal drugs that are probably affecting you. Lots of patients experience chemo brain and say that they feel their thought processes have slowed down and that they are forgetful. Give yourself time to recover and be patient, because it can take a very long time to recover from breast cancer treatment.
Are you still taking both Xeloda and Navelbine and for how long do you have to take them?
I know you are very active, but make sure you get plenty of rest.
That was a good idea to go through all your medication and supplements with your oncologist and I was glad to know that you agreed with lots of things that he said. Was there anything he thought you should not be taking? Was there anything he suggested you might like to take?
It is good to know that you have confidence in your oncologist and that you know he will help even if results are bad. I am sure it must make a big difference to your mental state. Not only with your medical team, but also with the people around you, you need to be with people who boost your confidence and make you feel positive. Keep away from anyone who drags you down and makes you feel in low spirits.
I saw from another thread that you were feeling down recently. If you feel like a good cry, then go ahead and cry. It is not good to bottle up emotions.
Keep happy and surround yourself with happy people, and do not forget to pamper and spoil yourself if you feel like it.
Love.
Sylvia xxxx
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Hello everyone.
I just thought I would finish what I was posting about Power Foods, as I have discovered you cannot find them on the website I quoted, but only in the What Doctors Don't Tell You magazine.
Lunch.
Watercress. What it does: add some watercress to your lunchtime salad if you have breast cancer, as it may stop the tumours from progressing.
X-factor: Contains a compound that interferes with signals from tumour cells, and so stops the flow of essential blood and oxygen to them, arresting their growth. Just one bowl of watercress (around 80gms) every day is enough to switch off the cancer cells' signals, researchers at the University of Southampton have discovered. As blood tests in breast cancer survivors show, the protein that helps nourish cancer cells gets affected.
Walnuts and walnut oil.
Tomatoes.
Olive oil.
If you want more details of the benefits of the other headings, please let me know and I shall print more details gradually. I still have Dinner, Drinks and Snacks to do.
Thinking of you all.
Sylvia.
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Hello everyone.
I forgot to say that I have joined up with What Doctors Don't Tell You to receive their newsletters twice a week. It is free. By doing this I can also go to their News page and go through the items of information and then click onto more detailed information. I think this website and the magazine along with CancerActive, Chris Woollams' Newsletters and Icon magazine are all worth reading. You can also get Vita magazine and Amoena magazine for free and they have lots of articles and letters from patients who have gone through breast cancer.
Best wishes.
Sylvia.
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hello sonjia ((hugs)) thx - alls good, having eyes tested today, no worries probably need to wear glasses.
my brain always feels dead, cancer or non cancer, no im fine, just a matter of speech.
yes still taking xeloda & navalbine, dont know how long.
yes i was a bit teary last week but nothing to worry about, i was telling another lady on here that was feeling down that its ok to have down times and we used to have them before bc but sometimes we forget.
whats happening over there, is the weather looking better?xx
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Thanks Sylvia, I would really appreciate if you could post dinner etc details, i find it very informative. Only if you have time.
No 11 of 12 down, am pretty tired so I'm going to go to bed shortly.
Take Care,
Carol xx
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Hi everyone,
thank you all so much for your wishes and support! Had the biopsy Tuesday afternoon, and would you know it, I was one of the few % whose lung collapsed!! It wasn't as scary as I'd thought, just felt a lot of pressure on that side and hard to breathe deeply. They put in a tube to get the trapped air out of the lung and left it in to drain the lung. That was very painful - they kept me overnight and finally took the tube out yesterday afternoon, after xrays to check the lung had inflated back to normal. So it was not a nice experience, but what great staff at the hospital, they kept me comfortable with pain meds! I also saw my onc before I left, and the Social worker from the Oncology Clinic, and really felt taken care of.
You're spot on Sam52 - they really threw the book at my bc and I was all for it - kill the beast very very dead! Well we'll know soon enough if the beast escaped.
Sylvia, I think they were'nt happy with the weight loss or the continuing IBS - I most certainly did discuss it with them. I subsequently heard from another woman here who had 3-neg st 2, gr 3, much lymph involvement (23 nodes), and her first 2 follow up checks were only blood tests. So I think they ordered the xray and the sonar for me because of those 2 reasons. Am very interested to read the info you posted on Power Foods - my eyes are drooping right now though, so I'll go through it later.
Went in to work for a couple of hours today, needed to get a couple of designs done - which I love doing anyway, then came home and am now on my bed, ready for a nap. I'm feeling ok, just very tired, my body took another knock yesterday.
Liv, am so pleased your brain scan was clear - phew, always such a relief to get good results! I so identify with your feeling towards your onc too - I started the bc road with a woman onc, who was great, but left the practice soon after and my current guy came in. I didn't feel too much of a connection with him at first, but our relationship has grown over time and I trust him and really like him - he's incredibly down to earth, no bullshit kind of guy, and has a very soft, kind side with it. There are 3 oncologists in the practice and they all sit down and look at each patient together, double check each other, all put in their feedback, so I feel like I have 3 oncologists! It also means that if Rainer, my onc is away there is always someone else familiar with my case who can step in. He never rushes me in appointments and has time to answer all my questions and explain everything to me. It's important to trust the people who kinda hold your life in their hands!
Monday afternoon at 16h00 is the next big moment, until then there's nothing I can do. It's strange but I feel more relaxed today than I have for the last 3 weeks! Probably all the pain meds they gave me for the drain!! whatever it is, I'm trying to hold onto it. Unfortunately no swimming till after the dressing has been changed on Monday, but I can do very gentle yoga at home, it will also help keep the anxiety at bay.
Thank you all again, you've all been a huge help to me!
Lots of love
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awwwww carol & ben
- so glad to hear from you, we were all so worried and i was hoping but not expecting to hear and so glad that you sound much better and now for the wait.
fantastic you feel safe in your medics arms, now time to nurture and spend some time mentally for you.
luvs
liv
xx
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aww jenn - at least your on your way and have the pain meds to help a little.
think its best to give up work, sometimes thats not a choice you just have to because of side effects.
i have been off work for going on 10months and have needed that time to get on top of bc.
lets hope your treatment starts sooner than the 31 days to get you back and on with your life.
luvs
xxx
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aww jenn - at least your on your way and have the pain meds to help a little. ..editted...that is not what i wanted to write, what i really wanted to say "how dare they make you wait in such pain' keep strong my gawd you need to be with the worlds health systems.. i hate u cancer!!!
glad to hear you are giving up work, sometimes thats not a choice but as you say you had such rotten go last time.
i have been off work for going on 10months and have needed that time to get on top of bc.
lets hope your treatment starts sooner than the 31 days to get you back and on with your life.
luvs
xxx
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Oh Carol, have been thinking of you, sorry to hear you had to deal with the collapsed lung, really rotten luck. Glad to hear that it was treated quickly and you are not too uncomfortable.
Will be keeping my fingers crossed for Monday and hoping for good news.
Jenn, I hope they are able to schedule you as soon as possible, must be hard waiting, I can imagine the waiting will be stressful. Not a good Valentines Day if you can't eat chocolates!
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jenn bugga the money, you will get through. so glad your at peace with that decision not to work.
when i was first fronted with all of this i would not surrender probably like you and went into work. then some mornings i was so weak so they set me up at home and each week with chemo i was doing less and less and finally pulled the plug. best thing ive done since having bc..
lucky i still have my job if i want but it is so much better and by the sounds of things with you its the only way too.
hate that you are in so much pain, last week before mastect mine was growing too, it is quite scary you poor darling.((hugs))
xxx
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Hello Liv, Thank you for your post. I think it was meant for me, but you have put Sonjia.
I do so hope you are feeling better today. Be gentle on yourself as those two drugs must be taking their toll on you. We are all here for you to help in any way that we can.
I do hope that you will sign up for the newsletter from What the Doctors Don't Tell you. It is free and it gives you access to a lot more information. I have just received my first newsletter and I am amazed at the information it gives me.
If you sign up we can discuss the information. Today there are articles about chemotherapy and surgery and how it is thought that they cause cancer to spread. It is all pretty frightening, but I suppose that we had better be informed.
It is not raining today and a bit milder, so I suppose I should be grateful for that.
I bought some nice organic apples yesterday that came from Australia.
Keep smiling,
Love,
Sylvia.xx
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sorry sylvia....see that brain dead thing is happening...lololol
SYLVIA
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ok sounds good, where the link to sign up sylvia?
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im off to bed over here in aus its 11.42pm.wishing all a great day and those sleepy, nite nite.
xx
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Hello Carolben.
Thank you for your post. I was so sorry to hear about your collapsed lung and so glad to know that the ordeal is over. Thank goodness the staff took good care of you.
I shall be so glad for you when you finally know what is going on next week. You can count on support from all of us here. We shall also give all of our support to Liv and Mumtobe, both of whom are still going through chemotherapy. It has been a long treatment for both of them. Mumtobe has had chemotherapy and surgery, brought baby Emma into the world and then has been back on weekly Taxol (paclitaxel). She has one more treatment to get through, and then it is radiotherapy. Liv needs our support as she continues treatment with Xeloda and Navelbine.
I was glad to know that you are interested in the information about Power Foods that is in the January edition of the magazine What Doctors Don't Tell You (WDDTY) www.wddty.com.
I am sure you will be interested in this site and I hope you will sign up to the free newsletter to get a lot more detailed information. If we all access this we can then pick out topics and discuss them. I could not find the article about Power Foods online, and I was hoping that Raymond could scan the pages and post them, because there are such pretty pictures with the information. However, I looked at the front of the magazine and saw that you cannot reproduce these pages without permission, so I thought I would put some of the information in my own words.
As far as the breakfast foods go, I think we should all try to eat some of those mentioned, oats, maple syrup, grapefruit, yoghurt, watermelon and eggs. Maple syrup apparently has at least twenty beneficial compounds that include phenolic antioxidants. We have to make sure it is proper maple syrup and because sugar feeds cancer we had better have it in moderation. If you can get the magazine, I think it is worth every penny and can be kept as a reference document.
As for lunch, watercress, walnuts and walnut oil, tomatoes, and olive oil. I think we all know these are healthy foods. Please read the particular reference to watercress, which is in my previous post. I think we shall be emptying the watercress from the supermarket shelves.
We shall all be thinking of you next Monday.
The Power Foods mentioned for dinner are broccoli, brussels sprouts, seaweed, brown rice, shellfish, fish, rhubarb crumble.
Remember that in the magazine the format under each heading of the food in question is what it does, and what the x-factor is.
Keep your spirits up. Monday will soon be here and you can take it from there.
Love.
Sylvia xxxx
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Hello Mumtobe.
Thank you for your post.
As you will see from my post to Carolben, I have posted the food headings for the dinner items of Power Foods. They are broccoli, Brussels sprouts, seaweed, brown rice, shellfish, fish, rhubarb crumble. I think we all know on this thread that broccoli is one of the number one foods and this article describes it as the prince of foods. We all know its many benefits, which includes its ability to boost the immune system. We should all know that broccoli and other cruciferous (members of the cabbage family) vegetables are full of sulphoraphanes. It is these that boost the immune system. For Brussels sprouts, cruciferous vegetables that belong to the Brassica family can apparently stop the spread of cancer. They encourage the production of indole-3-carbinol (I3C), which can, apparently, fight cancer and block the development of cancer cells, including breast cancer, prostate, liver, colon cancers and non-Hodgkin's lymphoma.
I was interested to read that scientists think that these vegetables might be able to help reverse some of the symptoms of Alzheimer's disease.
If you would like any more details about the individual food items, please let me know and I shall try to post information gradually. I know that on this thread we are all interested in nutrition and how it helps our health.
Finally, the Power Drinks are lemonade concentrate, cranberry juice, beetroot juice, green tea (the king of the teas), black tea, blueberry juice, apple juice, red wine (Carol, I can hear you saying “Hooray” as I know you are longing for that glass of wine when you finish treatment), coffee and pomegranate juice.
Remember that any juices should be free of sugar, preferably juiced from your own fruit or if bought made from juice and not concentrate.
As for snacks under Power Foods, we have dark chocolate (Sylvia's favourite and probably sam52's), grapes, almonds (apparently the super hero of super snacks), flaxseed, blackcurrants, apples and blueberries.
There is so much information in this magazine about these foods that it is well worth buying it. If you are in the UK your supposed to be able to buy at Sainsburys, Morrisons, WH Smiths and probably other places. If you cannot get the magazine in shops why not subscribe to it?
Carol, if you want anymore details please let me know.
You are nearly there now. Will you be given a rest before you start your radiotherapy and how many weeks of radiotherapy will you have?
How are baby Emma and your husband?
Love.
Sylvia xxxx
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Hello jenn-uk.
Thank you for your post. I was glad that you came back to us with your details, so that we can help to support you.
I hope that the six rounds of chemotherapy every three weeks will not be too awful for you. I do hope that Taxotere (docetaxel) and carboplatin, one of the platins, will get rid of all this for you. I know it must all be very exhausting, but you can get through this. I remember bak94 from the US posted on here while she was going through treatment again. Her cancer came back after eight years. She went through it and came out the other end.
You have probably done the best thing in having a Hickman line installed, as this will make it easier for treatment and avoid problems with veins.
I am so sorry to know that you have pain from your tumour and glad for you that you have morphine and sleeping tablets to help you through the night. At least if you can get a good nights sleep it will make you feel better during the day and help your immune system.
I think you have done the right thing giving up work for the moment as going through chemotherapy keeps you very busy and will require all your strength. You cannot have the stress of work when you are weakened by chemotherapy. You need a lot of rest. That is the secret of getting through chemotherapy. Remember to drink plenty of water, especially in the first days after chemotherapy, sleep as much as you can and keep looking forward to the day when treatment will end. Please ask for any help during this treatment and remember there are plenty of us here that will have all sorts of tips that helped us get through and may help you get through.
I think it is a bit much that you have to wait 31 days before you get some treatment. here in the UK we are not up to the mark when it comes to cancer treatment. I thought it was supposed to be better in Scotland. I wonder if those setting down these rules have any idea about what goes on in the mind of a cancer patient waiting for treatment. Today I heard on the radio, yet again, that we are not up to standard with cancer treatment, compared to other countries. They were trying to say that, in effect, it was the patient's fault, because the cancer was too advanced when diagnosed. I do not really believe this. We are too penny-pinching and not on the ball with prevention.
On the NHS there is too much bureaucracy and too much waiting. We patients need to be more militant.
We are all thinking of you and we are all here to help.
Love.
Sylvia xxxx
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Hello Liv.
Go to www.wddty.com
I think all of us on the thread should sign up to this free e-mail so that we can discuss things.
I did love the busy bee flying around my name!
You do bring a lot of joy here, Liv. I think you are a free spirit. I hope you are sleeping soundly.
Love.
Sylvia xxxx
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Hello jenn-uk.
Unless it is different in Scotland, you should be entitled to disability living allowance. It is not income related and can be done through your GP. It can also be done, probably, through the Citizens Advice Bureau. It is there to help financially with needs arising from your diagnosis of breast cancer.
Thinking of you.
Love.
Sylvia xxxx
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Hello All, For those of you interested in e-books you might like to look at the following link.
http://www.wddty.com/health-books.html
Best Wishes, Sylvia.
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Hi Sylvia,
Thank you so much for that. Very informative and I'm delighted because I'm eating/drinking a lot of what is on the list. Once treatment is over I am in God's hands, there's very little else I can do!
Emma & Alan are great thank you for asking. My husband is a very positive person. He doesn't think too far down the line but would have been like that anyway. He's so proud of me and so thrilled that treatment is almost over and we can begin to create a new normal for ourselves now.
I spoke to a girl in the radiation dept the other day and she said that I will have a CT scan soon to mark me and then I can be given anything up to 4 wks break before starting rads. Although I remember my onc telling me she wanted me to start immediately. The sister in the cancer unit did say that if I was on AC then I would need a three week break but not with Taxol, so we will see. I'm ready to start asap. Did you have a break between chemo & rads?
Fond thoughts,
C x
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