Calling all triple negative breast cancer patients in the UK
Comments
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Hello Jackpot
I hope all is still going well and that you are not suffering too much from any side effects from your second bout of chemotherapy. What exactly is in the wrist bands that help to prevent sickness?
Thank you for your explanation about Hodgkin's lymphoma and non-Hodgkin's lymphoma. It is good to build up information. I do hope your niece will start to feel better.
It is true what you say about children. It is very difficult to hide things from them as they are very astute and pick up on things. It is probably best to say cancer is an illness and that Mum is not feeling very well at the moment but the doctors are looking after her. He needs reassurance more than anything.
I hope all will be well with you as you wait for the next treatment and that you will be able to enjoy your photography and anything else that relaxes you and keeps you busy.
I was in my local Holland and Barrett and bought a copy of their magazine for September/October entitled Healthy. There is a section in there which I found very interesting under the section Insight. I was reading the article on breast cancer entitled Breast cancer – the latest ways to cut you risk. It is well worth reading and is very up to date. The magazine is full of useful information and costs on £1.99.
As I mentioned, I offered my friend and neighbour a lift because she had no transport and we had a good chat about our cancer treatments etc. She is very independent and wanted to go through treatment by herself. She said she had been through it before and would be fine. She had arranged hospital transport to bring her back. I have not phoned as yet because I want to give her time to recover as she was having quite a few drugs all together. I imagine she is doing a lot of sleeping.
Have a good weekend.
Thinking of you.
Sylvia xxxx
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Hi Sylvia and all,
Its been a busy week here so have not had time to post.
Sylvia you need to read my posts in a Norfolk accent as Liz always tells me thats how I write! I was never good at English at school. Maths and other logical subjects were always my strongest.
No we never go on Twitter. We have used Skype a few times but its mainly Facebook.
We also have a house full of items we never use but feel are to good to throw away.
Liz's lump originally came up over night and was painful as well. It seems to be more common with TNBC.
Liz has not had an easy week. She went to the hospital with her best friend on Tuesday. Her friend was told the chemo has not worked. She is being put on a different type which is mainly for her comfort. Her friend was told to go out and visit the places she wants to see and do the things she needs to do.
Liz was back at the hospital again on Friday with her friend taking her for her new chemo.
Liz finds it all very stressful as her friend has 2 young children aged 10 and 13 and will need to be told after Christmas. We also know it will affect Taylor our 13 year old as he struggles with change due to his Cerebral Palsy.
At the same time we are so grateful that it is not us going through this but know it could be at a later date.
My best friends wife has also just put in to have the cancer gene test as she is only 26. her mother died a couple of years ago from breast cancer and nearly all the women in her family has had breast cancer. The lady they saw at the hospital talked about her going onto Tamoxifen as a preventative.
It was Liz's birthday on Thursday so we had a nice day out at the Norfolk coast. Liz's joints especially her hips are really painful at the moment. she has not had this for a few months.
The weather is nice and sunny here and should be for the next few days.
Hope everyone has a good weekend.
Peter
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Hello Peter and Liz
I had to laugh at what you said about reading your posts in a Norfolk accent. There is nothing wrong with the way you write and I always enjoy your posts. Raymond has just told me that he read in the paper that the most trusted accent in call centres is the Devon one. Now, for some reason, that made me laugh. I must admit that when I have used call centres I have never been dealt with by someonee with a Devon accent. In fact, life can be so sloooooow here that I was not sure whether call centres had arrived this way. The accents I hear most from call centres are northern, Yorkshire, Geordie, Birmingham and Liverpool. Sometimes I hear Scottish and have to tune in, especially if it is Glaswegian.
Do you ever watch those programmes about compulsive hoarders?
With reference to TNBC, I do remember posts talking about how their tumours seemed to appear from nowhere and that some are painful. Mine certainly seemd to come from nowhere after I had strained my right arm gardening but the lump was not painful.
I was sorry to hear that Liz has not had an easy week. I can understand the strain she is under and how upset she must be about her friend. How awful for her friend that the chemotherapy has not worked. I do hope she will be alright on the different chemotherapy. The way you have written about it, am I to assume that it is not going to have much effect? Is it a case of the doctors just giving her chemotherapy for the sake of it? You hear so much about patients dying of the chemotherapy treatment and not of the cancer. I am sure Liz must find this very stressful and this is not good for her as she needs to avoid stress. What an awful situation this is with two young children of just 10 and 13. How much do you think they have picked up already of what is going on. I do hope your 13 year old son Taylor will be able to deal with all this. How has he settled back at school?
I do hope everything will go well for the wife of your best friend and that the cancer gene test will come back clear and that she will not have this dreadful disease hanging over her at just 26. it does not sound good that her mother died of breast cancer a couple of years ago and that nearly all the women in her family have had breast cancer. Do you know whether her mother and the other women were tested for BRCA1/2? If they were tested and were negative I wonder what other common factor they might have that caused them to develop cancer?
I have just been reading in the magazine Healthy that I mentioned to Jackpot. In the article on breast cancer there was quite a bit about the high risk genes BRCA1 and BRCA2 which are passed down in families. This genetic breast cancer amounts to only 5% and in this case the breast cancer is not caused by lifestyle factors. Of course, if you do carry these faulty genes you have an increased risk of ovarian cancer which is very difficult to treat and is often discovered too late. Your best friend's wife will be eligible for this test as apparently having three close female relatives affected (e.g. your mother, sister and grandmother would make you eligible).
According to this article, if you carry these genes you get access to annual MRI breast screening from the age of 30 and this is a very sensitive test. Also, according to this article, if you are positive for the genes, and opt for a double mastectomy like Angelina Jolie, the surgery has greatly improved and you do not end up with two large scars across your chest. They can do a skin sparing mastectomy, where the skin envelope around the breast is preserved and reconstructed, which looks natural with no visible scars. The article states that a mastectomy could reduce your breast cancer risk by about 90% and that having your ovaries removed reduces the risk even more. It states that a BRCA1 carrier will halve her breast cancer risk if she has her ovaries removed at the age of 40.
Since you mentioned tamoxifen, it also says that if you are over 35 and at a moderate or high risk of breast cancer, as a result of your family history or genes, you may be eligible for preventive drug therapy in the form of tamoxifen. It looks as though, in the case of your friend's wife, the hospital is prepared to give it at the age of 26. According to this article, taking tamoxifen for five years reduces the risk of breast cancer for at least the following 10-15 years. Your friend's wife would need to think about the side effects of this drug. It does cause hot flushes and weight gain and I think more serious side effects.
As I have said many times, I have read that if you take tamoxifen for long enough you can end up with breast cancer that is TNBC.
What a lot for a young woman of 26 to have to think about.
In this article it says that in the future, hopefully not too distant, it is possible that every woman with breast cancer will have their entire genome looked at, so it will be able to be ascertained which cells have become mutated. This will open up the way for tailor-made treatment. Apparently back in the 1970s 52% of women diagnosed with breast cancer were alive five years later and this rose to 85% by 2009.
We have to try to remain optimistic. Let us hope that if breast cancer cannot be prevented that it will become easier to treat and enable quality of life just like some of the other chronic illnesses.
In this article it outlines how to reduce your risk and lists the following,
Reduce your weight (because being overweight results in the production of oestrogen from your fatty tissue after the menopause, increasing breast cancer risk. Even before menopause it is important to watch your weight as it is harder to loose weight after the menopause.)
Exercise
Cut down on alcohol
Eat a balanced diet
Limit stress (Stress dampens down your immune system so your body is not as good at fighting off cancer.)
I am glad you had a nice day for Liz's birthday. It is important to mark special days to relieve the routine of everyday life.
I was sorry to hear that Liz has pain in her joints. Is it arthritis? There is a cream out, Pernaton, which is supposed to be very effective for joint pain relief. It is made up of an extract of green lipped mussels which come from New Zealand and are supposed to be healthy and good for joint pains. You can get it at Holland and Barrett.
It has been a very dull, wet day here in Exmouth. It started off very early this morning with a thunderstorm and there has not been a hint of sun all day. It has been a day to stay indoors and catch up with some chores. Raymond and I like to watch Dateline London on Saturdays at 12:30pm. It is an excellent current affairs programme for half an hour. We were disappointed to discover that it was not on today, but we did listen to Radio 4 Any Questions and Any Answers. It is always very informative and is one again about current affairs.
Wishing you and Liz all the best.
Sylvia
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Hi Sylvia,
Liz's friends children do know she has cancer and she is having treatment again. They do not know it is going to kill her within the next 2 years. The oldest may have an idea though.
I have seen the programmes about compulsive hourders. It seems to be an English thing. We hate throwing things away but have got better these last few years.
The chemo she is having I think is to help prolong her life and keep the cancer from spreading quickly.
My friends wife family has never been tested for the gene as most of them were over 45 when they got it.
Liz has always had very flexible joints and has always been told she will get problems with them in later life but pain in her hips, knee's and ankles has only been bad since the chemo. And does come and go. Liz was tested for arthritis but she does not have it.
I love watching currant affairs and political programmes, but so many seem to be about religion something I am not a fan of to say the least.
Peter
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Hi Sylvia
The wristbands I mentioned work on acupressure and have to be placed in a certain position on the wrists they are mainly used for motion sickness but work on any kind of nausea....I had to take them off Thursday night as my wrists swelled up and the nausea returned so Friday was spent curled up with a blanket feeling sorry for myself for most of the day...but feeling better now..
Thanks for telling me about the holland and Barrett magazine I didn't know they sold one but ill be sure to pop down and get one...it sounds interesting....hopefully they will have some left
Take care
Jackpot0 -
Hi peterandliz
It's funny you should mention that lizs lump seemed to came up overnight and was painful because that was exactly how it was for me...it was like one minute it wasn't there the next it was and it was pain that alerted me to it i had no idea
I go on Facebook quite a lot and was just wondering what groups you have joined and how helpful you have found it
Take care
Jackpot0 -
Hi Sylvia
I am well behind on what is going on the group, I have just been trying to catch up. Getting ready for the arrival of my stepson has kept me busy and now he is here I am tryng to keep my ocd tendencies under control and resist constantly cleaning up after him. He tells me there are friends arriving and his girlfriend
Jackpot gave a good description of the difference between Hodgkins and Non Hodgkins lymphoma. Hodgkins seems to mainly affect young people and has a high cure rate.
I am off to Brugess tomorrow. It will be the first time I have been through the Channel tunnel and I must say I am looking forward to the journey.
Michael
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Hi Jackpot,
Liz is on a closed Facebook group that started on another cancer site .breastcancercare.org.uk The group was called "Starting Chemo in Nov 2011" and they went through chemo together. Over the 5 months they became friends and decided to move the group to Facebook as these sites are so outdated. As you know Facebook is instant and a wonderful way to keep in contact, Chat to each other and share your life with other people. The group started with 55 members and is now down to 52 as 3 have died. This makes it very hard as you become friends even though you have never met.
Liz has also joined a couple of other open cancer groups but have found they are factual groups without any interaction between members. She does not like them as they do not help her. They post news about cancer and whats happening in the world of research but it does not help us at all. As Liz says "who wants to here about a drug they are testing and may be available in 10 years time? It will not help me if I get cancer again in 4 years time".
I find reading about personnal experiences more informative and read all the way through this thread when I found it about 8 months ago.
There is a thread "Starting chemo in September" http://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/Starting-chemo-in-September/td-p/749213/page/47 I would suggest you join it as you will go through everything together. They have already started a closed facebook group as well as far as I can see so they will be your friends for life.
Peter
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Hello Peter and Liz
Thank you for your posts. I think it is probably for the best that the children of Liz's friend know that she has cancer and is going through treatment again. As for the two year prognosis she has been given it is never really definite and it is probably best to remain optimistic. No one really knows for sure the path of cancer. Let us hope that the new chemotherapy will slow down the spread and prolong her life for much longer.
As for the family of your friend's wife, I think that if they were just over 45 that is still quite young to be developing breast cancer.
From what I have read on this forum aches and pains anywhere in the body seem to be part and parcel of chemotherapy treatment. The treatment is very harsh and toxic but it does bring us into a state of no visible evidence of disease and prolong life. I do hope Liz can find some relief from her pain. I have neuropathy in the feet from treatment with docetaxel (Taxotere) but most of the time it does not bother me too much.
I was interested to know that we share an interest in watching current affairs and political programmes as I think we should all be aware of what is going on in our country and in the world. I think we need to keep a watch on our politicians. I can understand what you say about religion and I am not at all religious and think it should be a private matter and not get tangled up with politics. I cannot understand why in the UK we do not have separation of state and religion.
I hope you and Liz have a good week and please remember that you can talk about anything you like on the thread as anything that takes your mind off cancer is a good form of therapy. What will be your routine as summer disappears and we go into autumn? For me as a neat freak it is not my favourite season with all the leaves falling.
Keep posting.
Best wishes.
Sylvia
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Hello Jackpot,
Thank you for your post and the information about the wrist bands. Wrer they the cause of the swelling. I do hope you are feeling better today. Do not be afraid to spoil yourself and to sleep and rest as much as you can. It can only hgelp to strengthen your immune system. I do hope you find a copy of the magazine in Holland and Barrett so that we can discussd it all.
I spoke to my friend and she is not doint too badly. She is very tired, suffering from the metallic taste in the mouth that I remember experiencing when I was taking docetaxel which makes food somewhat unappetising. She also said she had a longing for porridge oats and so was having that for breakfast. She is a lovely woman and another one tall and slim like me who had never been ill.
Thinking of you. Keep looking forward and keep with us. You can talk about anything you like. It is good to get to know one another, as this is good therapy.
Fond thoughts.
Sylvia
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Hello Michael
Thank you for your post. I hope you will manage to catch up with what is going on with our group as your posts are very important to all of us and I do not think any of us will ever forget the story you told about you and Janette and then Janette's tragic death. I do hope things are getting a bit better for you and that you are cherishing all the happy memories. I shall always look at the Janette Collins Foundation that you started in her memory. It is a great website to look at and has a lot of information.
I can imagine how busy you have been preparing for your stepson's visit and I had to laugh about what you said about your obsessive compulsive disorder tendencies and your attempt to keep them under control. I can understand how you are constantly cleaning up after him. I am sure I share your tendencies as I like everything in order and so does Raymond. We think it is so much easier and simpler to be clean and tidy than to live in a total state of disorder. From what I have seen on programmes on the television about parents trying to deal with their teenage children, children of today seem not to know how to keep their rooms in order and can cause chaos in their parents' homes. I sensed panic in you about his girlfriend and friends arriving. The smiley said it all!! I am sending you all my sympathy. I do not think I could cope with it.
I have a younger brother with three daughters and they are all disasters when it comes to being tidy (not!). The daughter of my elder brother, who died of cancer in 1995 at just 56, is also very untidy. The other thing I noticed about that generation was that they could not get up in the morning!
I think it is very brave of you to be going off to Bruges today and leaving your house in their hands! I do hope you have a good time. Bruges is supposed to be lovely. Raymond and I have been through the Channel tunnel once on a trip to France with our car.
Let us know about your trip when you come back.
Take care.
Best wishes.
Sylvia
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Hello everyone
I do hope it will be a good week for all of you.
A special hello to apandy, Anne, in London, as I thing you are having an appointment either today or tomorrow and will start chemotherapy. Please let us know how you get on.
A special hello to Bigleggy, Sandra, as I seem to remember you will be getting your pathology report on Wednesday October 2nd and then starting chemotherapy.
Together with Jackpot, that will make three of you going through chemotherapy.
A special hello to Martone, has your mother begun radiotherapy yet?
To my special friend sam52, I hope all is well. I have started to read the Damien Bride book. It is interesting, revealing and dare I say it entertaining.
To SamUK, I hope you are fine as you wait your surgery on October 16th.
To susaninicking, not long to go now before you start radiotherapy.
To adagio and Carolben, we all hope you are having a good holiday.
To InspiredbyDolce, Debra, and linali, Lindsay, I hope to hear from you soon as we need your words of wisdom.
To everyone, a few snippets of information from the magazine Healthy.
According to this magazine we have never been so well informed about breast cancer and diagnosis and treatments have made great progress.
However, it is still the most common cancer in the UK with 48,000 women being diagnosed each year and the incidence of cancer increasing.
Survival rates have doubled in the last 40 years but more than 11,000 women a year still die from the disease. It further states that many deaths can be prevented through lifestyle changes, regular screening and being breast aware.
Eight out of ten breast cancers occur in women over 50 but more women under 50 are being diagnosed, accounting for one in five. This article seems to think modern lifestyles may explain why.
That is enough for today.
Wishing everyone the very best. Keep the thread going and post about anything you like.
Sylvia
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Hello Everyone
I saw my oncologist today and it looks like my first chemo will be on 16 October.
I am having Fec-T for six cycles (3 x Fec and 3 x Taxotere), meaning I should be done by the end of January. That, of course, will be followed by radiotherapy. I am thinking I might be able to return to my teaching job in the summer term.
It's nice to have another two weeks respite before the treatment starts, but at the same time, I would like to get on with it! I am not looking forward to it and am particularly worried about sickness. The oncologist said if you experienced problems with sickness during pregnancy then it is likely you will during chemo. That is not good for me as I did find nausea a problem then. I am also prone to motion sickness. I told her this and I assume she will ensure I get suitable drugs to help. The list of other side effects is daunting too!
Regards to everyone and best wishes,
Anne x
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Hi Sylvia
Yes I think the wristbands were the cause of the swelling but only on the wrist were i had treatment which is really painful to the point were i can barely touch it...is this normal...
I hope your freind is felling better soon...the treatment is worse than the illness, I've been reading about the side affects of taxotere and talking to people as well and it seems almost everyone is affected by neuropathy, I've just read that you also have this, do you still suffer from this daily even 8 years later, I'm really worried about the last three treatments of taxotere, any permenant damage to my hands or feet could really affect my ability to return to work as a Postie, which would be devastating for me...I might speak to my oncologist about this and tell her my concerns, surviving this is one thing, destroying your body in the process is another....have you spoke to many people on here who have come through taxotere with no permanent side affects?
Thame care
Jackpot0 -
Hi apandy
Your on the same fec-t as I am, I'm a little further ahead than you I get my third fec on the same day as you get your first, the nausea is a bit of a problem for me the day of chemo and the following two days, can I just suggest you get a couple of acupressure wristbands usually for motion sickness as I found they helped when I wore them,
I agree the list of side affects is daunting but hopefully you won't suffer to bad
Take care
Jackpot0 -
Hi peterandliz
That was a good idea to move the group over to Facebook as it a lot easier way of keeping in touch with people, I have joined a couple of groups on Facebook but they aren't very personal if you didn't know anyone before you joined so only go on to read about new information that has been posted, but I understand the frustration about reading about new drugs that may or may not be available in years to come,
It is definitely is better hearing personal experiences especially the uplifting ones that give you hope...
I will have a look at the thread you posted the link too, thank you for that
Take care
Jackpot0 -
Hi Jackpot, Apandy and Sylvia.
Jackpot, Apandy is already on the October thread? She will be able to tell you all about it.
Apandy, you also have Lulu on the October thread. She is amazing, she is the one I mentioned to Sylvia about who is now going through cancer for the 4th time but with secondaries this time. She was on Liz's thread "starting chemo in October 2011" She has an answer for everything as she is also a Breast cancer nurse. She's full of life and determined to enjoy as much of it as possible.
Sylvia, I also saw there was a mortality calculator posted on that site. Very similar to the one the doctors use.
http://www.lifemath.net/cancer/breastcancer/outcome/index.php incase anyone wanted to find out their mortality rate.
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Hello Anne
Thank you for your post. We shall all be thinking of you on October 16th. It looks as though in the UK FEC-T for six cycles is now the most common regimen for chemotherapy. I had EC for four cycles and then docetaxel (Taxotere) for four cycles, every three weeks. I must admit that I did not find it very difficult and people on these threads will tell you that it can be done. I think when I next see my oncologist I shall ask her why I did not have fluorouracil (F) with the epirubicin and cyclophosphomide. My hair came out after the first dose and I wore a wig to my second appointment. The only side effect I had from the first lot of treatment was tiredness.
When I went through treatment I was not on any forums and I informed myself through reading. When it came to Taxotere I asked the cancer nurse at the treatment ward if she had any information about the drug. She went off and came back with a booklet, saying I can give you this to read but it will probably put you off the treatment. I took it and read it anyway. It was while on the Taxotere that I noticed my eyebrows and eyelashes disappear but the fringe of my wig covered the area of my eyebrows so this did not bother me and the eyelashes did not notice that much. Please do do not be overly worried about this. A lot worse can happen to you in life. It was on Taxotere that I noticed some of my toenails went brown but not my fingernails. It was not until I had finished all my chemotherapy and all my radiotherapy that I felt the soles of my feet were strange. It felt like I was walking on scrunched up paper. I saw a podiatrist and she diagnosed neuropathy and told me there was no cure. My GP told me the same as did my oncologist who said the neuropathy would have been caused by the Taxotere. It is nothing very much and most days I am not even aware there is something wrong, so do not let any of this worry you.
Anne, you have the right attitude, look forward and think of life post-chemotherapy and post-radiotherapy. Focus on returning to your teaching job in the summer term.
It is waiting for treatment that is difficult. Once you start you are kept busy and time goes quickly. You will get through this and try not to focus on possible side effects or side effects that other patients have had. Have you thought about the anti-sickness band that Jackpot has been wearing? I was speaking with my neighbour and friend who is doing this for the second time round, and she was not experiencing any nausea or sickness, just tiredness and lack of energy and the metallic taste that Taxotere seems to cause. You need to make sure you take the anti-sickness medications. My friend had been given them to take before she started the chemotherapy the second time round. Sometimes I think it is better not to read about all the side effects. Remember they are only possible side effects and you may not experience them at all. I think a lot of it depends on your state of health when you start treatment.
Keep that smiley in front of you at all times.
Fond thoughts.
Sylvia xxxx
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Hello Jackpot
I hope you had a good day today. It looks as though you may have had rough treatment with the cannula. I think there is a definite art to doing this and not all nurses have it! When I was diagnosed a retired nurse who had been very active in setting up FORCE cancer charity in the grounds of my hospital, saw me when I went there just before starting chemotherapy and she more or less adopted me and came to all my chemotherapy treatments with me. At one appointment, when things were not going right with the insertion of the cannula, I caught her glance and saw her dismay. She told me later that the cannula was not being inserted correctly. She was quite angry about it.
Remember everything I have said to Anne you will not necessarily suffer these side effects. Do not read too much. As I told Anne, I was told there is no cure for neuropathy which is damage to the nerves under the feet. I believe you can also get it in your hands. It is nothing of which to be afraid. After treatment you could see a podiatrist like I did and get tested. It is very easy to get a diagnosis. I am sure you will be OK to return to your job as a postie. The neuropathy has not affects my mobility in any way. I do hours and hours of gardening in the grounds of the apartment complex where I live, can walk with speed and ease and am always on the go. There is no pain, just a strange feeling of roughness. Do not focus on this. Look forward to beyond your treatment and to getting back to your normal life. You will survive this and your body will get back to normal. My oncologist explained to me that she had to make my body toxic in order to get me better. She told me that she had chosen Taxotere rather than Taxol because it was less harmful to the heart. Cancer treatment is harsh but it can be done and you can get on with your life. By all means talk to your oncologist if you have concerns. Quite a few women on this thread went through treatment weekly and they all said they found it easier than every three weeks.
I cannot recall everything that has been said about side effects with different patients. We all experience the drugs differently. If anybody reading the thread can say that they have been through treatment and have no permanent side effects please post to let us know. If anyone has been able to cure their neuropathy please post as well. We want this thread to inform and enlighten. Every day should be a learning curve.
At least you and Anne can go through this together on the thread and we can all help to get you through and learn from your different experiences.
Keep being strong and optimistic.
Fond thoughts.
Sylvia xxxx
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Hello Peter and Liz
Thank you for your post. I like the sound of your friend Lulu. She sounds as though she is full of energy and optimism. Please give her my best wishes and tell her I agree that you must live life to the full.
Thank you for the link and I am sure some people viewing will look up their mortality chances but my attitude is that each day I wake up I am living another day.
It has been really miserable in Exmouth today. It has been damp and misty but I still did some work in the grounds. I find gardening very therapeutic. I was talking to an elderly resident here whose wife died in January and he is still very distraught. I felt so sad for him but did all I could to comfort him.
This afternoon Raymond and I went for a drive along the seafront and it was deserted today. The empty beach looked lovely and the sea was calm. From Exmouth beach you can look straight across to Dawlish Warren and the lovely beach there which is never very crowded. You can go across on a water taxi. On Exmouth seafront builders were working away on a new fish restaurant which is rreally close to the sea and down the far end of the seafront near the Beach Pub, some shops and the marina, which has replaced the old docks. Builders were also busy working on a huge glass building on the seafront, which houses ten pin bowling, a restaurant, a bar and function rooms on the ground floor. They are taking for ever to finish the rest of the building. There is also work going on for a Premier Inn on the seafront.
That is about all for today. I am going to have another mug of decaffeinated green tea and some bitter apricot kernels and probably watch some television to relax.
Keep posting and tell us about your days.
Best wishes.
Sylvia
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Inspired - I am just finishing up on Milk Thistle - I took it after I had finished all my treatments because I had read that it was a great liver detoxifier, and I really felt that my liver needed a boost after chemo and radiation. Don't know of any other benefits for milk thistle other than clearing out the liver.
Sylvia - I am now back from vacation and trying to catch up with all the posts on this thread - good for you for keeping it so alive, and great to have new people. Like you often say, we can learn from each other. The best part of my vacation was that I completely forgot about cancer and enjoyed feeling "normal". That will change quickly since I go for my 3 month check up on October 3rd - keeping my fingers crossed.
big leggy - my first sign of anything being amiss was excruciating pain in my breast - but there was no lump. I had the pain on and off for about 10 months before the lump appeared. It is so "not true" that cancer does not cause pain.
Now to get back to a healthier diet - the down side of travelling is that it is not always possible to eat as well as one does at home. And I must confess I did indulge in the beautiful South African wines.
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Hi all,
I wanted to just throw this out as food for thought for those about to start chemo. I started treatment at one hospital and planned to have my chemo at this hospital as well. The chemo at this hospital was FEC/Doc. Due to some complications (not relevant to this post) I went to see my GP to ask some questions and he suggested a trip to the local research/university hospital for a 2nd opinion on all things BC related. We were totally shocked to learn that the chemo was different across town, and this hospital had statistics to back up their regime of EC/Taxol. Among the things that I remember them mentioning was that they no longer saw the need for the fluorouracil, and were also using weekly Paclitaxol (Taxol) instead of Doc because it was tolerated so much easier. The FEC/DOC would have been a faster regime, but I chose the longer regime because I wanted this to be as easy as possible and I was convinced that their survival numbers warranted the longer regime. EC was for me pretty unpleasant because my nausea was never well controlled, but the 12x Taxol was really easy in comparison..no problem. In retrospect I think this was a good choice. Having met women from this board who did higher dose Taxol I can say with 100% certainty that I had the easier regime.
So I wanted to just mention all of this in case some of you might have more than one regime option. It's all doable but I'm such a chicken and was happy to have chosen the easier option.
I'm doing a BC walk/run this weekend and I will be stomping on BC (along with several friends) on behalf of myself and all of you! It looks like it may rain but I'll be there to represent regardless of the weather.
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Hi All,
Just posting some interesting information on Turkey Tail (it's a mushroom, not the tail of a turkey!)
)Here's the page on Amazon where the Turkey Tail is listed along with reviews. I was reading the reviews and it's amazing what people have posted about this, and the other products on the same page.
Thanks for participating in the walk Susan and for promoting a cure for all of us!
Adagio, thanks for the update to my question on the milk thistle!
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Inspired - that's great info about the mushroom. I have been taking a supplement for a few months now which has a combination of 7 mushrooms and this turkey tail mushroom is one of them - it is also known as coriolus versicolor or cloud mushroom.
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Hello adagio
Welcome back to the thread and I do hope you had an enjoyable vacation and feel ready to face autumn and winter. Take your time catching up on the posts and if you have any comments on anything posted please do not hesitate to do so.
I was glad to know that during your vacation you were able to put cancer completely out of your mind and enjoyed feeling 'normal'. It is good to take breaks because we must not let cancer take possession of us.
I do hope all will go well when you go for your 3 month check up on October 3rd. Be sure to let us know what goes on as it is always beneficial to compare our treatments.
I think we all understand that it is not easy to eat as healthily outside the home as it is inside, but I am sure we all do our best.
Thinking of you and sending you my best wishes.
Sylvia xxxx
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Hello Susan
Thank you for your post, an interesting one as usual. I do think that different hospitals use different chemotherapy regimens but tend to think that oncologists have their reasons for using the different drugs. However, the pool of drugs is much the same. Cyclophosphomide (Cytoxan) seems to be used in most of the regimens for treatment of primary breast cancer, along with either epirubicin (Ellence) or doxorubicin (Adriamycin, Caelyx, Myocet). I think these are both red in colour. I am not sure if there is any difference. When I first started looking at this forum I got the impression that epirubicin is used in the UK and doxorubicin in the US. I do not know if that is still the same. I do remember that the nurse looking after me at my first chemotherapy said that epirubicin was very nasty and she called it the 'red devil'. I must admit is was fine on EC. Why fluorouracil (F) is added to some regimens I do not know. The brand name is Efudex. As for the group of drugs known as taxanes, docetaxel (Taxotere) and paclitaxel (Taxol), I can say only that I had docetaxel every three weeks and my oncologist told me it was less harsh on the heart than paclitaxel.
In your post you mentioned you were told that paclitaxel was being used because it was better tolerated than docetaxel. Were they comparing weekly docetaxel and weekly paclitaxel? I know from this thread that women seem to suffer fewer side effects on weekly treatment in general. I do know that the taxanes both come originally from yew trees and that paclitaxel comes from the Pacific yew tree, hence the pac. I believe that now they produce it synthetically which is probably cheaper. Docetaxel comes from the European yew tree, which probably explains why it is used in the UK and apparently it is a semi-synthesised form of paclitaxel and was made because of a scarcity of Pacific yew trees. I doubt that there is much difference between the two.
I was alright on docetaxel as well but I did loose my eyebrows and eyelashes, had a metallic taste in my mouth and had some browning of the toenails. It was not until I had completely finished all my treatment that I developed what was later diagnosed as neuropathy.
I have read that fluorouracil is used for secondaries from cancer of the breast.
I think for our newly diagnosed patients, who have so much more information than we had, should ask for an explanation from their oncologist of why a certain drug is being used rather than another. This is the only way to make progress.
I hope all goes well with your BC walk/run.
How will you keep busy until October 10th?
Fond thoughts.
Sylvia xxxx
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Hello Debra
Thank you for your post and the links. I shall be looking them up. I know that there is a lot of information out there about the benefits of mushrooms in general and certain mushrooms in particular. I often make an omelette with fresh Chinese Shitake mushrooms. They are supposed to be a very good anti-cancer mushroom.
How are you keeping and how are you progressing on metformin?
Fond thoughts.
Sylvia xxxx
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I've never heard of weekly DOC.....is there such a thing? I had low dose taxol as compared to bi-weekly (I think, chime in here peggysull!) and just had little to no SE's. I have heard of many women who had horrible bone pain on higher dose Taxol. A friend here had FEC/DOC and had serious and painful nail issues on both hands and feet. I agree that women should be asking why one regime as compared to the next.
I will stay busy until the 10th enjoying a month of no cancer treatment and feeling at least for a bit that life is back to somewhat normal. Well that and house cleaning!0 -
Hello Susan
You might be interested in the following link about docetaxel and paclitaxel.
http://en.wikipedia.org/wiki/Docetaxel
I think there may be a trend towards a feeling of less is better with the treatments we have to undergo. There have been a lot of posts on this thread over more than three years but I am pretty sure that some women have had weekly chemotherapies and fared much better from the point of view of side effects.
I have read recently there is a trend towards less is better with radiotherapy and the experts are looking at a week of radiotherapy now.
I am not surprised this is happening as we all know how lethal all this chemotherapy and radiotherapy is and in the past patients have been submitted to a lot of it. If the same results can be obtained with less treatment it will be better for our bodies.
How is life in Germany? It seems that Angela Merkel is very popular.
Best wishes.
Sylvia xxxx
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Hi Sylvia
I was sent for a pet/ct scan today because I was having some pain in the top of my spine and nothing was showing up on the X-ray, boy that radioactive injection is painful...my poor right arm is battered and bruised right now, I'm not sure what permenant damage I'm doing right now but it's pretty painful
Take care
Jackpot0
