Calling all triple negative breast cancer patients in the UK
Comments
-
Sylvia, and others. I am 11 days past LAST chemotherapy round. HOW LONG before my head hair begins to grow? How about my eyebrows? ( since THEY didn't fall out as quickly as my head hair)... Pubic hair, don't care how soon on that (tee hee) . Can I honestly start singing "all I want for Christmas is a full head of hair " .....
0 -
Hello FernMF
You will have to be patient waiting for your hair to grow back, as from my own experience it does take quite a time.I started chemotherapy in November 2005 and finished at the end of April 2006. I then had surgery and later radiotherapy. I finished all treatment at the end of July 2006. I had stubble on my head throughout 2006. The hair grew back slowly but I wore my wig from November 2005, all through 2006 and did not have sufficient hair growth to be confident enough to remove my wig until March 2007. Perhaps others on the thread will have had different experiences. First of all, it grew back darker than before and was really curly. It latter went back to my natural brown colour and some of the natural wave returned.
As for eyelashes and eyebrows, they fell out when I started Taxotere in the second three months of my chemotherapy. They took a long time to grow back and even now my eyelashes and eyebrows are more sparse than they used to be.
I hope others will post to tell you how it was for them.
Keep busy and your hair will grow back in time. Good nutrition is important for this.
Best wishes
Sylvia xxxx0 -
Hello Michael
It is good to know you are still viewing. I hope everything is not too bad for you.You can also get tofu in Tesco's and the brand is a good one, Cauldron. Once you open tofu you are supposed to keep it in the refrigerator in some water and covered.
I hope you will keep viewing. I am also trying to eat as a vegan, but have concerns about eliminating fish and prawns from my diet. They are about the only animal products I buy but do not buy much.
Wishing you all the best.
Sylvia0 -
Hello Mumtobe,
If you like spicy foods you can also buy falafel balls in the Cauldron brand. They are made from chickpeas and just need warming in the oven.You may also like soy burgers, but make sure you read the ingredients. Some of them are full of junk. I buy Tesco's own brand.
Best wishes
Sylvia xxxx0 -
Hi Sylvia
I am still reading and I am still waiting for the tax approval.
I have been quite busy with work over the past few weeks and this week will also be busy. Next week I am staying in Bideford for a few days with some old friends. I am hoping the weather is good.
Michael
0 -
Hello Michael
It was nice to hear from you. It must be very frustrating waiting for the tax approval when you have already got so much set up.I can understand that you have your work to do and I do so hope you find it interesting. It is good to keep busy. Make sure you do not overdo things.
I was interested to know that you are going to be staying in Bideford for a few days with some old friends. I hope you have an enjoyable and relaxing time. Bideford is quite a nice little town. Let us hope you get good weather. We are supposed to be getting quite a bit of rain this week, so perhaps the following week will be nice for you.
Have you looked at a website entitled Susan G Komen for the cure? I happened to look at it the other day, after seeing a big advert for it in Prevention magazine and I was curious to see what it was about. The advert had a photograph of a woman with stage IV breast cancer and was apparently written off by her doctors. Through this website she got treatment and is still alive after seven years. I do not know whether she had TNBC.
What struck me on the site was that there was loads of information about breast cancer, treatments etc. but not that mush about triple negative. It is disconcerting that they just mention the negative receptors and say it is aggressive. With this TNBC you cannot seem to get much further on than the very basics.
Wishing you all the best.
Sylvia0 -
Hi Sylvia,
The consultant at the centre on Saturday was very good but quite general as he has to be when speaking to a group of people with many different cancers.I did ask him about the latest research on TNBC and he was very receptive to all new advances, cautious but encouraging. As for screening for ovarian cancer he said that there isnt such an acurate test apart from a special ultra sound.
He is my friends oncologist and she had asked him about markers etc and he told her that they arent done for breast cancer as a rule. He was optimistic about new treatments for many different cancers but also concerned that any new treatments could be very expensive.
It was good to hear that he and other cancer specialist are constantly striving to improve treatments and the system, wish he was my consultant.
Have been watching stand up for cancer on 4 and loved the one last night about the choir. It seems to be something that is advocated [ the oncologist in Galway is in the process of setting up an online choir here, as people are too far apart to travel to practice as a big choir] as a fun and theraputic thing to do. We have our first choir get together this evening. It was quite difficult getting a choir director and finding songs that everyone likes isnt easy, I hope that he will come up with some.
Cookery classes starting today and looking forward to a 3 course lunch and then later we are doing sleep techniques. I think the 3 course lunch will send me to sleep anyway.
I hope that veryone is doing ok and for those in treatment or feeling down I send all of the healing light that we gather in our meditation
0 -
Hi, I'm in the UK. I was diagnosed Christmas eve 2008 and started chemo in Jan 09. After 8 chemo's and 3 weeks of radiotherapy I had a bi lat and no rebuild. I worry about reoccurance but especially so as I never have any kind of tests on my follow ups. I am asked how I feel and I'm given a quick prod but no scans or blood tests. It seems people in the US get more tests in their follow ups than we do. Can I ask if you are happy with your follow ups and have you had any scans or blood tests. Hope you are keeping well.
0 -
I can't believe how long it has been since I posted on this thread!
I want to let Sylvia know that I had my hysterectomy! I am in the hospital now recovering, waiting to go home. It was not too bad, but now I have to wait for the pathology. They are going over everything very closely because of my brca 1 status. I am so glad to have everything out! My surgeon said everything looked good. My left ovary was attached to my bowel, so that was a bit tricky to remove, it looked like endemetriosis was the problem which explains a lot. I had heavy periods and pain for years. They will look all that over at the lab to make sure it is not anything ominous, but he thought it all looked good!
0 -
Hello to everyone and welcome to the new Ladies.
This is the best site, thanks to the trojan research from Sylvia
Linali, thanks for the healing light.
0 -
Bob was in trouble. He forgot his wedding anniversary. His wife was
really mad.She told him "Tomorrow morning, I expect to find a gift in the
driveway that goes from 0 to 200 in 6 seconds AND IT BETTER BE THERE !!"The next morning he got up early and left for work. When his wife woke
up, she looked out the window and sure enough there was a box
gift-wrapped in the middle of the driveway.Confused, the wife put on her robe and ran out to the driveway, brought
the box back in the house.She opened it and found a brand new bathroom scale.
Bob has been missing since Friday.
0 -
Hello linali
Thank you for your post. It sounds as though you had quite a positive meeting on Saturday with the consultant. Of course, he would be quite cautious talking to a group of people. To which of the new advances was he receptive? As I see it, there is a lot of emphasis on gene research, but we still shall end up with new chemotherapy drugs that are lethal to the body. I think this is how the medical establishment sees advances in cancer research. Most of these drugs will be too expensive and not available in the UK on the NHS. NICE will not approve them. Do you think this will be the same in Ireland?
I did ask my oncologist at the RD&E in whom I have complete confidence, about any new treatment currently available for TNBC and she said there was nothing.
I did a bit of research about testing for ovarian cancer and it looks as though there is nothing. We need to come up with some kind of mass screening, as I think ovarian cancer is more problematic to treat than breast cancer and is often discovered too late and results in lots of deaths.
What is the special ultrasound for ovarian cancer and how do you qualify for it?
It looks as though the cancer markers in the blood are not used in the UK or Ireland for keeping a check on what is going on with people 'in remission' for breast cancer. I also asked my oncologist about this and she said it is only good for the day on which it is taken and it is not used for check ups. Last Friday, when I went for my check up with the clinical assistant to my breast cancer consultant, I said something about how we did not get blood tests or scans as part of our check ups, but I did not get a response.
It is only my own opinion, but I think there should be much more emphasis on prevention than on developing more and more lethal drugs and ones that cost too much. I think we all know the toll, especially in the long term, that these drugs can have on our bodies.
I was interested to know that you have been watching Stand Up for Cancer on Channel 4. I did not see the programme about the choir, but I can understand that singing must be very therapeutic. I think that anything that can take your mind off cancer and make you feel relaxed and happy must be good for you. Our bodies need plentiful doses of happy hormones and not to be filled up with cortisol, the stress hormone. I do hope you enjoyed your choir practice and that all went well. I think that if any nation can sing their hearts out it is the Irish and the Welsh.
I do hope you had a good three course lunch. On this thread I think we are all interested in good healthy food and shall be interested in any recipes that you have to offer.
We shall all be interested to hear about sleeping techniques.
You are doing a really good job, linali, and are very important on the thread.
Keep singing and keep happy.
Sylvia xxxx
0 -
Hello wiggy2012
Thank you for your post. I am sorry that you have to be on the thread, but I would like to welcome you very warmly on behalf of all of us. The fact that you are nearly four years out from diagnosis will be a great encouragement to all of the newly diagnosed and those going through treatment. You prove that everyone can get through this.
Like all of us that have gone through treatment successfully. There is always that nagging doubt and anxiety about a recurrence, metastases, or a new primary.
In the UK it looks as though all we get is a physical check up. This should start with three-monthly check ups after the end of standard treatment, alternating between the oncologist and the breast cancer consultant surgeon. After a couple of years this should go to six-monthly check ups, again alternating, but again only physical check ups. After seven years and four months since diagnosis I am still having the six-monthly check ups. I know, from asking, that these check ups are making sure that everything feels smooth to the touch. If not, there could be a problem. Last October, at one of these check ups, it was thought that I had a problem with my one remaining left breast. Because of this, I was sent for an extra mammogram and an ultrasound, and fortunately everything was alright.
It looks as though we do not get scans or blood tests unless it is thought that something is wrong. I think the oncologists and consultants look to us to tell them if we have any suspicions about something being wrong. As we have said before on the thread, there are pros and cons about having scans. If we have CAT scans or bone nucleide scans we are exposing ourselves to radiation and that in itself is a cause of cancer. It could be that in the US they are having too many scans. I hear mention of MRI scans, PET scans and MUGA scans. I do not think I would be happy with too many scans. All I have had is a CAT scan a bone nucleide scan before treatment and the same two scans after I had finished treatment.
As for blood tests, I have not had any to detect any cancer markers since I finished treatment. I do not know if I have ever had any blood tests for these. When I was first diagnosed, I had a fine needle aspiration which took blood. What was looked for in that I do not know. I just remember the consultant examining my right breast and saying that it was breast cancer, but she now had to prove it. She then did the fine needle aspiration and the next day I had a mammogram, ultrasound and core biopsy. Later I was told that I had breast cancer, that it was not hormonal, that the receptors (oestrogen and progesterone) were negative and that Tamoxifen would be of no use, so the prognosis was not good. At that point there was no mention of HER2.
I think you will find on this thread that those of us in the UK, and probably in Ireland and Malta, have not had any scans or blood tests as part of the normal regular check ups. I do not think we would get them unless we had reason to think we had a problem.
I think we learn to live with the thought that our cancer can come back, but, as the years go on, we put it to the back of our minds.
I hope this helps and I hope you will continue to post and let us know how you are. We have tried to build up a happy group and we do not have to talk about breast cancer. We try to inform, support and comfort, but also to laugh. BernieEllen makes sure she keeps us all laughing and looking on the bright side.
Best wishes
Sylvia xxxx
0 -
Hello bak94
Thank you for your post. I was so happy to see you back on this thread. Keep this up.
Thank you for letting me know that you have had your hysterectomy and that you are now recovering in hospital. I was thinking of you on Monday and wondering how you had got on. I am glad that the surgery was not too bad and sincerely hope that you will have a good pathology report.
It is good to know that your medical team is going over everything very carefully, because of your BRCA1 status. It must be a great relief to have this behind you and I hope that when you get out of the hospital it will be a new beginning for you and you will be free of hospitals. As you say, it looks as though you probably had endometriosis and that is why you had pain and heavy periods. A former neighbour of mine suffered a lot with endometriosis and her doctor used to tell her that it was because she had not had any children.
Make sure that you take good care of yourself. My understanding is that you need a lot of time for recuperation after a hysterectomy and that you cannot drive for six weeks.
We are all thinking of you on this thread and wishing you a complete recovery. After that I hope that if you continue your studies all goes well.
Sending you fond and healing thoughts.
Sylvia
0 -
Hello BernieEllen
Thank you for the compliment you paid about the thread. It makes me think the effort is all worthwhile.
I never tire of reading your jokes and they do cheer me up. I think the long evenings and dark mornings are making me feel a bit low in spirits, so it is good to have a laugh. I do not like autumn as for me it is the untidy season and I am a naturally neat and tidy person. We have some big sycamore trees in a couple of gardens at the back of the grounds to our apartment complex and they are so messy. I swept up a load on Monday as I like to be out in the air. The gardener came yesterday and there were loads more leaves. I like the spring and summer.
I really liked your joke about the bathroom scales on the driveway!
On the TNS I have just read your hilarious posts about the son who left his father the note and especially the one about the Irish language. You are quite welcome to put these on this thread.
I have only been to Northern Ireland and just once, but I do remember going into the Irish Republic and loved the joie de vivre of the Irish. We do have an Irish jockey in the family, but he lives in Dubai and we have yet to meet him.
Did you see my post about the Irish woman speaking on BBC Radio 4. It was hilarious to listen to. If you cannot get it, let me know and I shall listen to it again and put the words on the thread.
Wishing you all the very best. Fond thoughts.
Sylvia xxxx
0 -
Hello everyone
Yesterday I saw the headlines on the Daily Mail and bought the paper to find out what it was all about. The heading was BREAST CANCER TIME BOMB FEAR. Experts warn that NHS faces crisis as number of women living with disease is set to treble to 1.7 million.
The article goes on to say that by 2040 1.7 million will be coping with the illness – three times as many as today. That means that roughly 600,000 are coping with the illness today and that is out of about 30 million, which is roughly the population of women today in the UK.
The article further states that the increase will be partly caused by the ageing population of the UK and the fact that breast cancer is far more common the over 50s.
The good news is that more women are now surviving the illness and living for many years. We have to hold on to that and to take in the fact that breast cancer does not have to be a death sentence.
Of concern to me is the fact that the NHS will be less and less able to cope as the numbers surviving increase. We already have a reputation for bad cancer care in this country. I also think that for many problems the powers that be do not make preparations for the future and then are in a state of panic. It looks as though this has happened for transport and fuel.
Continuing with the article, campaigners are concerned that the NHS will not be able to handle elderly patients over the age of 65, whose numbers are expected to quadruple by 2040.
It is also stated that the health service is not doing enough to help women with the long term effects of cancer and these include Heart Problems, Loss of Energy, and Emotional Trauma.
Concern is expressed by a person from Macmillan Cancer Support who says “The NHS is not going to be able to cope unless it learns new ways to provide treatment and support for women with breast cancer. The really big concern is around older people with cancer. That is what is going to challenge the NHS”.
The person then goes on to comment about the NHS not providing support that allows women to cope with the side effects of their cancer. The person points out that radiotherapy will affect the heart, surgery will affect their upper body strength, and that breast cancer is a traumatic illness for women.
There seems to be concern that the over 65s are not being treated properly and that surgery may not be offered to women in their 70s and 80s.
In another part of the article it is stated that breast cancer is now the most common type of cancer and that one in eight women will develop it at some point in their life. It is stated that there are 48,400 new cases a year, but 95% will survive longer than 10 years (I would like to know what happens to them after 10 years). In the early 1970s only about 80% could be expected to live for 10 years after diagnosis. There is concern that, as the prognosis improves, the NHS is not offering enough help to women dealing with the long term side effects of breast cancer. Again, we have heart disease from radiotherapy, chronic fatigue from chemotherapy and emotional problems.
As I was reading this, the same thing struck me as when I read a lot of things connected to breast cancer and other cancers. In this article there is no mention of any curiosity about what is causing all this breast cancer. Why should it be assumed that cancer is part of ageing? Moreover, I think that we can no longer say that it is now confined to old age. With reference to TNBC we are told that it affects mainly young women and we have had on these threads tragic cases of young women with their life before then dying and leaving young children. We urgently need to know why this is happening.
I hope this will be of interest to all of you. New medication is all very well, but we need to know what is happening, especially in the western world, that is causing all of this.
Thinking of you all and wishing you all the very best. I hope that things are not too bad this week.
Sylvia
0 -
There is a dangerous virus being passed around electronically, orally, and by hand.
This virus is called Worm-Overload-Recreational-Killer (WORK). If you receive WORK from any of your colleagues, your boss, or anyone else via any means DO NOT TOUCH IT. This virus will wipe out your private life completely.
0 -
This is a flying visit, but just thought you'd be interested in a fairly comprehensive talk on TNBC which was broadcast by the Triple Negative Breast Cancer Foundation yesterday.....I think the new posters on this thread will find it very informative... The link below should get you to the right place. Bye for now!
0 -
Edited as link didn't seem to work when I tried it, but I think it's OK now...if for some reason you can't get in, google Triple Negative Breast Cancer Foundation, and on the right of the home page there is a box entitled Uncommon Knowledge...open that for the talk..
0 -
Hello BernieEllen
Thank you for your latest post. I needed a laugh to start the day and the WORK virus did the trick!
I am posting a transcript that I listened to on Radio 4. I thought the words were good, but of course this will lack the Irish accent that was there when I was listening.
==============================
This was by Fiona Looney, Irish writer and broadcaster. She reflects on the news that a company has found oil off the coast of Cork.
“We have had a spot of bother in Ireland lately. You may have heard.
We went a bit mad on the property markets. Not the kind of mad that most of the world went, but proper jet-propelled mad.
It was like a giant never-ending game of Monopoly, while pumped up on steroids.
We were the Lance Armstrong of property development, and then the game ended and we had to give all our little green houses and lovely new hotels back to the bank, and then we had to give the banks back as well, and now we are governed by the IMF under the strict understanding that lessons have been learned.
Those of us who put our names on waiting lists for Hermes handbags have been given community service.
The Probation Act has been applied to those who installed decking and everyone who got their teeth fixed during the boom, and there were a hell of a lot of us, has been banned from smiling in public again until our debt has been reduced to single billions, but even as we were all putting our names down to spend our next summer holiday in the caravan from Father Ted, something was happening in the water.
They are calling it a miracle.
The Holy Stone of Clonricard has been mentioned, because, just as we were about to have austerity incorporated into our national flag, up from the sea has come a bubbling crude.
Oil, that is. Black gold. Texas tea!
There could be 280 million barrels of it off the coast of County Cork, with a few more located outside of Dublin Bay.
The Dublin oilfield is just across from Barlows beach front home, a logistic that has upset the burghers of Burrough rarefied village greatly, and cheered the rest of the country even more, because we have to find solace somewhere in our slick new fortunes.
The fact that the government licensed the oilfields for a paltry sum that will see the Exchequer take just 25% of the value of the find, rankles with those of us who were already measuring our heads for 10 gallon hats.
Still, 25% of 280 million is a hell of a lot of black stuff, and since everyone in Ireland was obliged to hang up their dancing shoes when Michael Flatly retired, you will forgive us if we break into some spontaneous jigs and reels now.
It will only be a tiny Oil Barons Ball, honest, and we promise that we shall moderate the size of our shoulder pads and the plunge of our décolletage in accordance with the terms of our IMF bail-out.
So we promise not to go mad again and we vow that all our Hermes handbags will be last season, but you will forgive us if we have just a little party, spend just a little of our new found wealth, and maybe even buy just a little ostentatious house or two, because Happy Days are Here Again, or as Father Ted himself might have said, Careful Now!”
I am sorry, Bernie, if I have made some mistakes with the places. I could not quite make out what was being said.
Best wishes
Sylvia xxxx
0 -
Hello Maria_Malta
Thank you for popping in and for the details about the link. I shall listen to it later on today.
I was thinking about you yesterday and wondering how your curry meal went. I was also reading a book that I thought might be of interest to you and others on the thread. Some of it is heavy, but most is highly readable. It is by Dr Ben Goldacre and is entitled Bad Pharma. It is all about how drug companies mislead doctors and harm patients. There is a lot of information in it about trials, research, drugs, drug-reps etc.
Wishing you well.
Sylvia xxxx
0 -
Hello Svlyia and everyone else reading x i have/am still so poorly..... sitting in my chair..where the feet go up..thankfully i have ALWAYS had the chair...since i had sciatica..
I have this 'ripped' feelin in my back all down left hand side at the time i also heard a small crack..in the same place..i have only been examined once! My breathing is poor...BOTH my legs i am concerned about putting to much wait on them....i have been taking a liguid..laxative and now its working overtime....my friend has told me how to stop this...i am not hungry at all...and althought i am TRYING to keep myself clean ..as i cannot wash..there today seems to be a slight aroma of Harry Hamster...about...
Now i thought the dn Nurse might ask me questions about how i am coping...so far i have been offered a wheelchair!
We need a second commode as poor John has to take the chair up and night and bring it down every morning...
My wound on chest wall is now looking rather like a huge 'red and purple' onion..waiting to pop...i have been taking loads of painn killers..they didnt touch it....just made me think i had texted £4000 to Liverpool football club....i was a little concerned..at that one!
A letter came out of the blue last Saturday to go and see the surgeon....last Tuesday..i had to cancel..and now i have one for November...wonder what that is all about?
I am to have 2 scans ..next Wednesday one lasting 4 hours...i am not up to it..and tbh i dont want to know! I am opting out of all treatments and will do down the Holistic route..although my friend says they can drop you off the system...that would not suprise me!
I think i have made some sense in what i have written...
I dont plan on lying around here for ever either! John reckons we might have to 'share' the wheelchair...ermm we will see (laughs)
Take care
Dulcie xxxx
ps the rip and crack could be Osteomalacia a little known one can be told Ostopenia..like i was..
0 -
Thank you Michael & Sylvia for those recipes. My appetite has gone through the roof. I am now waking during the night and having to get something to eat. I'm hoping it's due to the pregnancy. Sign is on I had my final check up today before delivery and my baby is a week ahead of itself in growth which is a great thing. I'm looking at delivering a very healthy 7lbs 11ozs (ish) baby next Tuesday the 23rd with God's help.Have been eating really healthily overall, have become addicted to pak choi but I did indulge in some chocolate biccies last night (it was dark choc which made me feel better) but I needed the sugar! I will be in touch to let ye know all re baby. Take care xx
0 -
Hi Mumtobe xx roll on next week ..if you want to eat thats only a GOOD thing!! I wiil be thinking of you next week ..along with EVRYONE else!
I would love to send you something PINK ......when i can get out and about! I hope you might just PM if you can !
Dulcie xxxx
0 -
Thank you so much Dulcie, I hope you feel better soon, was reading your update today. I don't come on here that often anymore and will probably be on here even less once baby arrives. I will indeed send you a PM when I next come on here. You take good care of yourself and talk soon xxx
0 -
Dear Dulcie......I am so sorry you are feeling bad and wish there was something we could do to help.
What was the outcome from the Marsden? I understand you are feeling really worn out with all that is happening to you, but am really concerned that you are thinking of opting out of treatment. I am sure the Marsden will have many ideas for treatment options for you.
It is about time your wound was attended to properly and allowed to heal as it should.Maybe that was the reason for the appointment with the surgeon? I think you should ask for a more urgent appointment as it sounds as though it is very painful.I can't believe the ineptitude of your medical team.
We are all thinking of you
Take care,
Sam xx
0 -
Thanks for that Sylvia. I have not heard the radio show but I read her columns.
Fiona Looney is an Irish columnist, playwright, scriptwriter and media personality. Regularly writes columns for the Irish Daily Mail and Womens Way magazine.
She also regularly contributed to The Gerry Ryan Show on RTÉ 2fm and was previously a contributor to the topical comedy show The Panel. Looney's other television credits include working as a reporter for news programme Capital D. She previously worked as a writer for the political music magazine, Hot Press, had a career with BBC Radio in London and was a scriptwriter for Raidió Teilifís Éireann (RTÉ).
0 -
Dulcie, thinking of you. Wish I could do something to help.
I find it frustrating on the forums that we get to know so much about each other but cannot meet in person.
I do agree with Sylvia, please rethink your treatment options. Is there a care centre near you? More for advice and support.
Take care.
0 -
Hello Dulcie
Thank you so much for your post. I was sorry to hear that you are still feeling so poorly and I hope that something can be done to make you feel more comfortable. It is good that you have a nice comfortable chair and that you can have your legs raised.
Please do not let yourself go and try to ignore what the oncologist at the Royal Marsden said. Nobody really knows the outcome of a person's individual cancer. The worst thing that can happen is for you to become despondent.
Having a gentle shower or just washing yourself down will make you feel better. If you cannot manage by yourself, then you need to get someone in to help you. You might be better off with the Macmillan nurses and Hospiscare nurses, rather than just the district nurse. Hospiscare nurses make wonderful friends and companions and they can work miracles if you need anything. They can work with your GP and the hospital. I never regretted accepting them into my home when the oncologist asked me if I would like them. We had very good conversations over a cup of tea for about an hour, and I could have had them more had I wanted. They were always available on the phone. The Macmillan nurses will know exactly how to give you the care you may need or want.
With your OH John also being unwell, you need all the help you can get.
Try to eat, if only very small portions, and eat what you fancy.
As far as the district nurse is concerned, tell her what is bothering you and ask her how she can help. I would resist the wheelchair offer if at all possible, as you need to keep the circulation going in your legs.
I am very concerned about the state of the wound on your chest wall. Painkillers are obviously only good to relieve pain. It seems to me that you need something to get the swelling down. I am not a doctor but there must be something that can be done.
It is a pity that you had to cancel your appointment with the surgeon last Tuesday as he probably wanted to see what he could do in the way of treatment. If it were me, I would definitely not be waiting for an appointment in November. So much time has been lost already. I would try to get an appointment next week as a matter of urgency. Metastatic breast cancer can be treated and people do live for a long time with it with treatment. If it were me I would also want an urgent appointment with my oncologist and would want to try chemotherapy.
If I were you, Dulcie, I would also try to have the scans so that your doctors have a clear idea of what is going on. These scans should have been done ages ago. Do you know whether you will have a CAT scan or an MRI scan. The other scan that takes time is a bone nucleide scan, but it does not actually last for four hours. It is done in two parts and there is quite a wait in between. I have never had an MRI scan, but people who have had one tell me they are painless but a bit claustrophobic. There is no radiation exposure in an MRI scan. I have had the other two scans which are also painless, but there is exposure to radiation.
Please think carefully before you decide not to have them and not to have any treatment.
What chemotherapy, if any, have you been offered? I was listening to the TNBC Foundation presentation for which Maria_Malta provided the link and picked up on one thing, which was about carboplatin and cisplatin (the platins) and taxanes for TNBC. Apparently this is used for ovarian cancer and in particular basal-like TNBC.
What has made you think you will go down the Holistic route, and what exactly are you thinking of doing?
You have to be careful what you are doing with the medical system. You would not want to drop out of the system or be dropped out, as that would leave you defenceless and unprotected.
Unfortunately I think that only the standard treatment of surgery, chemotherapy and radiotherapy are all that we have to stabilise our breast cancer.
I took quite a few other things during my treatment, but really as adjuncts. My breast cancer surgeon referred me to the Royal Bristol Homoeopathic Hospital in Bristol, where I saw a female doctor who had previously dealt with cancer, and she treated a lot of women undergoing orthodox treatment for breast cancer. The medicine given to me seemed to have helped me quite a bit. I started oral Iscador (mistletoe) treatment before I started standard treatment and then I was prescribed medication for each stage of my standard cancer treatment. it must have helped because I was not ill through surgery, chemotherapy or radiotherapy.
I also saw, privately, for one long consultation, with a nutritionist, alternative doctor in Bristol and got a lot of information on nutrition. It was then that I started eating Himalayan bitter apricot kernels that are supposed to kill cancer cells and I am still taking them. I also consulted, through the post, with a well known herbalist and took wormwood tablets and astragalus powder. I started all of this before I started pre-surgery chemotherapy.
The good friend that you have made, does she have breast cancer or has she had it?
I do hope the situation will get better for you.
At least, Dulcie, you keep your sense of humour and that is very important. Have you had a DEXA scan to check your bone density to see if you have osteoporosis? It is common in post-menopausal women.
We are all thinking of you and post as much as you like if it takes your mind of of everything.
I forgot to mention that pycnogenol is another very good immune booster. I think it is used at the Penny Brohn Centre in Bristol.
Thinking of you and John.
Fond thoughts.
Sylvia xxxx
0 -
Hello Mumtobe
Thank you for your post. I would not worry if you have a good appetite. You have to remember you are eating for two. We shall all be looking forward to the delivery of your baby and hoping all goes well. The baby's weight seems very healthy.
I was interested to know that you like pak choi. It is something that I like as well. It is healthy and a good source of calcium. Enjoy your dark chocolate biscuits.
Take care of yourself (and junior).
Sylvia xxxx
0
