Calling all triple negative breast cancer patients in the UK
Comments
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Hello linali
It was nice to hear from you. I was glad to know that you had been at the centre nearly every day, because I think you find it very fulfilling.I was so sorry to hear that you had seven new women joining because of illness. Did they all have breast cancer? The number of cases seems to be getting worse. I would be very interested to know, if it is breast cancer, what the receptor status is and how old they are.
It is good that the woman beginning her chemotherapy had you all to talk to her and reassure her. Chemotherapy is definitely the most frightening part of the treatment, the longest and the most wearing. Patients need to know that they can get through it. I would be interested to know also whether newly diagnosed patients who need chemotherapy are still getting the same protocols as of old, or whether new ones are being tried. Are they still starting patients off with a combination of epirubicin, doxorubicin, cyclophosphamide, paclitaxel, docetaxel and fluorouracil. It seems they may be using the group of drugs known as platins, such as cisplatin and carboplatin.
Your WALK A LAP IN MY SHOES sounds very interesting. Tell us all about it nearer the time.
August 4th sounds like an interesting day, but perhaps fattening! I suppose a full Irish breakfast is the same as a full English one. I would love to be at your centre to be able to have the benefit of firing off questions to an oncologist. Make sure you ask a lot of questions. With reference to TNBC, why are they not making more progress and what is causing it? I feel I would have to have that banner "Where is the cure?" in evidence somewhere. I am feeling so indignant about all the deaths pain and suffering. Raymond thinks my headstone should say "She was so indignant!". I feel there is nothing wrong with indignation. In this country there are so many things about which to be indignant.
I was interested to know about the types of cancer that people coming to your centre have. I know that breast cancer is the most common but ovarian cancer seems to be on the increase. I was surprised that lung cancer is not there. I was told that primary bone cancer is rare, so I am wondering whether those with bone cancer have it spread from a primary cancer somewhere else.
Enjoy the sunshine and get plenty of vitamin D, but do not overdo it.
We are not that enthusiastic about the Olympics. We feel it is all for the benefit of the rich and will probably leave the country in even more debt. In a country like ours with a double dip recession and lots of people suffering, we feel this is all too much. The country needs to calm down. We have already had the Euro Cup and the Diamond Jubilee. People need to come down to earth. The next thing will probably be another "Royal" birth or wedding.
Wishing you all the very best, linali.
Sylvia0 -
Sylvia
I think Lymphoma, in general, is a an easy disease to get through. There are so many treatments and I have heard people comment that their doctors say that if you have to have cancer this is the one to have. There seems to be a huge amount of research into the disease.
Michael
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Hello everyone
I am just finishing off the posts about some links I have recently discovered. Please have a look at the following.The Breast Cancer a Mammogram Can't Detect by Lynn Okura on Oprah.com
http://www.oprah.com/health/The-Breast-Cancer-a-Mammogram-cant-detect
The Breast Cancer Nobody is talking About by Mary A Fischer
http://www.oprah.com/health/The-Breast-Cancer-Nobody-Is-Talking-About/
This article starts off with the following. "One virulent, fast-acting, type of breast cancer attacks more than twice as many young black women as all other women."
It goes on to say that although there have been a lot of new treatments over the years, there is really nothing new for this type of cancer. This article is, of course, talking about TNBC and saying that the only treatment is chemotherapy. There are a lot more details in this article, including the mention of the BRCA1 gene, which appears to play a role in triple negative cancers, but how, exactly, is not clear.
You might want to look up Dr Olopade and how she brought this breast cancer to the attention of medical circles.
There is mention of prolonged stress as a possible connection.
I feel I should quote the following. "Olopade wants women to know that a diagnosis of triple negative cancer is not a death sentence. It is aggressive but can be treated."
There are three pages of interesting reading here.
11 Tips to Get Through Chemo by Jennifer Griffin
http://www.oprah.com/health/11-Tips-to-Get-Through-Chemotherapy
These tips are most important for those about to start chemotherapy. Some that stood out for me were as follows.
Get your teeth dealt with, as you will not be able to have dental treatment during chemotherapy.
Get your wig, as your hair will start to fall out after the second treatment.
Eliminate sugar and dairy products from your diet.
Importance of green tea.
If you are having milk, eggs or meat make sure they are hormone free.
Eat plenty of cabbage.
Get fresh ginger for a natural anti-nausea food.
I hope you find these articles of interest.
Best wishes
Sylvia0 -
Hello everyone again
I just wanted to wish everyone an enjoyable and happy weekend wherever you are.I want to say a special hello to our American ladies. I have been watching RT on the television for temperatures in the world. I know that there are states where it is absolutely sizzling.
Special hellos to Lint_Roller_Derby (Betty) in Florida.
FernMF in West Virginia. I hope you had a good week at the beach and have come back ready to start chemotherapy on July 31st. I hope all goes well.
youngmommy I hope your radiotherapy went well and that breast cancer treatment is behind you now. Are you still continuing with your project? I would be interested to know how it is going.
Christina1961 I hope you manage to get some rest this weekend.
bak94 I would love to hear from you. I hope all goes well with your bone scan. Are you still going ahead with a hysterectomy this summer?
mccrimmon324 we have not heard from you for a while, but I have followed your move on TNS. I know you have been immersed in 50 shades of grey, which is top of the best sellers here in the UK. There are stacks of this book in the bookshops as well as the second and third books in the series, 50 shades darker and 50 shades freed. I have read that it has outsold any other book, including the Harry Potter books! I have not read it myself. What do you think of it and why is it so successful? I have been too bust reading Marx's Ghost - Midnight Conversations on Changing the World by Charles Derber. It is non-fiction. I find it very hard to read fiction these days.
In the UK special hellos to the two Karens, Karen_Sheffield and Karen3.
BuddhaWolf and Iz_Lys_Mum - I hope all is well with you.
Maria_Malta - we are wondering what has happened to you now that your treatment has finished. We would love to hear from you and you do not have to talk about breast cancer. You could send photographs of your lovely walled garden.
Dulcie, I hope to hear from you to see how you and your OH are doing.
I hope I have not forgotten anyone.
Have a good weekend
Sylvia0 -
Good Morning Sylvia:
Thank you for remembering us. My wife is doing fine. She completed her 28 rads treatment last week. She was fine until the last few cycles when she got severe burns under the arm and the whole breast area is blacking. I think it is normal when the rads are about to end. She keeps the radiated area moisturized at all times and I think that has helped.
So the next step is to start with the reconstruction process. Plastic Surgeon would do the TEs fill in first week of August and then my wife would have exchange surgery probably in late August.
The photographs of the flowers you posted were gorgeous. I check/read this forum almost few times every day and I must say that you are a source of wonderful information. I do not post often as I do not want to sound irrelevant to the context. But your insight and concern for everyone is truly phenomenal.
Life is busy with a 4 year old, but we are trying to do as best as we can. Some days are hard and tough, but guess things gets better with time.
I do not have enough courage and motivation to continue with the project, but I WILL restart it OR do something equivalent once my wife finishes treatment and return to little bit of 'normal'. I know you will understand.
Have a wonderful day ladies.
Thanks
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Hello Dulcie
I have been doing a bit of looking on the section All Topics and I went to the forum Not Diagnosed With Recurrence or Mets But Concerned and I found a thread Lung Node What Tests To Ask For. It was from an American woman. She said you should have six-monthly or three to six-monthly CAT scans and/or PET scans. She said that with her lung nodes she was referred to a pulmonologist who then took over her care and referred back to her oncologist. I thought this might be of interest to you.With everything that is going on in the NHS, because of cuts etc., we have to make sure that we get everything that we need. As far as I am concerned, good healthcare is a human right.
You might also be interested in the thread Not a Typical Negative - Am I Alone Here? I discovered it sometime ago and found it interesting.
Hoping all is as well as can be expected.
Thinking of you
Sylvia0 -
Hello Michael
I was interested in what you said about lymphoma. Do you know what causes this kind of cancer and how does it manifest itself? What is the difference between non-Hodgkin's lymphoma and Hodgkin's lymphoma? Do you know how many people are diagnosed with it?The husband of a friend that I had when I lived in Canada was diagnosed with non-Hodgkin's lymphoma, probably in his sixties, and he was very ill with it. He was not expected to live and she was told to prepare for his funeral!!! She took him out of the hospital and he survived for many years. He later died of a heart attack and there was no trace of cancer in his body.
The mother of the wife of one of my brothers died of lymphoma cancer when she was in her early fifties. I think there may have been some negligence with her treatment.
Thinking of you.
Sylvia0 -
I changed my i Pod name to Titanic . It's syncing now .
When chemists die, they barium
Jokes about German sausage are the wurst .
A soldier who survived mustard gas and pepper spray is now a seasoned veteran .
I know a guy who's addicted to brake fluid . He says he can stop any time .
How does Moses make his tea ? Hebrews it .I stayed up all night to see where the sun went. Then it dawned on me .
This girl said she recognized me from the vegetarian club, but I'd never met herbivore .
I'm reading a book about anti-gravity . I can't put it down .I did a theatrical performance about puns . It was a play on words .
They told me I had type A blood , but it was a Type- O.
A dyslexic man walks into a bra .
PMT jokes aren't funny, period .Why were the Indians here first ? They had reservations .
Class trip to the Coca-Cola factory . I hope there's no pop quiz .
Energizer bunny arrested . Charged with battery .
I didn't like my beard at first . Then it grew on me .How do you make holy water ? Boil the hell out of it !
Did you hear about the cross eyed teacher who lost her job because she couldn't control her pupils ?
When you get a bladder infection , urine trouble .What does a clock do when it's hungry ? It goes back four seconds .
I wondered why the baseball was getting bigger . Then it hit me !
Broken pencils are pointless .
I tried to catch some fog . I mist.What do you call a dinosaur with a extensive vocabulary ? A thesaurus .
England has no kidney bank, but it does have a Liverpool .
I used to be a banker, but then I lost interest .
I dropped out of communism class because of lousy Marx .All the toilets in New York's police stations have been stolen . Police have nothing to go on .
I got a job at a bakery because I kneaded dough .
Haunted French pancakes give me the crepes .Velcro - what a rip off !
Cartoonist found dead in home . Details are sketchy .
Venison for dinner ? Oh deer !
Earthquake in Washington obviously government's fault .
I used to think I was indecisive, but now I'm not so sure .Be kind to your dentist. He has fillings, too.
A friend of mine has just e-mailed this to me and I thought it would be a good way of ending the week with a chuckle. This friend is always cheerful and optimistic. To be in his presence is better than taking any tonic. He is like this despite having been through very serious illness.
I hope you appreciate this BernieEllen.
Have a good weekend
Sylvia
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Hello everyone
Have found the following website and it has all the information you need about what can happen after breast surgery and how everything can be treated. There is everything from seromas, haematomas, drains, swellings, infections etc. Please have a look.Sylvia
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Sylvia, there is a lot of speculation about what causes lymphoma, from pesticides to cosmetics. I personally think I got mine through hair dye. In the 70's I used to be a hairdresser in London and for six months I did nothing but colouring and perming. One is suppossed to wear gloves when using the dyes but I couldn't work with gloves. Having said that, when I was about 10 I remember feeling a lump behind my ear and seeing the GP who told me it was a boney spur. Nothing ever happened to it until I started my first chemo and suddenly I realised it had gone.
Most of my lymphoma has manifested in my skin although the back of my throat and mouth did contain a huge tumour at one time. I really first getting symptoms about ten years before I was diagnosed but they were all explainable by simple conditions. It is only when I had a "fatty cyst" removed from my forehead that the biopsy revealed lymphoma.
The type of lymphoma I have is called follicular Non Hodgkins lymphoma, which is known to be quite indolent. There are about 40 different types of lymphoma some of which can be very aggressive. The more aggressive the more likely the lymphoma is to be cured. My type is not curable.
Apparantly lymphoma is the 6th most common cancer, I hadn't heard of it pre diagnosis.
Michael
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Hello youngmommy
I was thrilled to hear from you and to know that your wife is doing fine. It is always nice to have people who have posted popping in. If they disappear we tend to think something has happened, although I do realise that people get cancer fatigue and have to take a break. This has happened with TEK2009 and Josephine_, both of whom were regular posters. They were both having a lot of problems with the disease and I do wonder what happened to them.You must feel very relieved that your wife has now finished her radiotherapy and that this brings the standard treatment to an end. I hope the burns and blackened skin will heal nicely. It is good that she is keeping the radiated area moisturised at all times.
I hope all will go well with the reconstruction process. I was surprised that it was being done so quickly, although all surgeons are different. I know that reconstruction is sometimes done at the same time as surgery, but that makes for a long operation. Some surgeons advise waiting quite a long time after the end of treatment.
I was glad to know you liked the photos. I feel it is important to lighten up the thread and give some cheer from time to time, as breast cancer treatment is a long and tiring process.
I was glad to know that you read this thread every day as it makes it all worthwhile if people are finding it useful. I was also glad to know that you find all the information useful. We need as much information and knowledge as we can get and we must be on the look out all the time for anything new that might make future treatment not so harmful.
Thank you for the kind words that you said about what I try to contribute to the thread. Please pop in whenever you like because everything that anyone contributes is of value. I started this thread but in my head it is our thread. It belongs to everyone who is viewing and posting.
I can imagine that you have a busy life with a four year old. Do you have a boy or a girl? Children are very interesting at that age and very entertaining. As your wife gets better and your life becomes more normal, I hope everything will fall into place.
I can understand that you are too occupied and probably preoccupied to concentrate on your project. When the time is right to do whatever it is that you want to do, you will know.
From everybody on the thread, best wishes.
Sylvia0 -
Hello Michael
it was nice to hear from you again and to learn about lymphoma. I had been reading a bit about it this afternoon. What you said about your own lymphoma seems to make a lot of sense. I fully believe that cancer can be caused by hair dyes, cosmetics and pesticides. I remember reading very many years ago about hair dyes and breast cancer. There was particular concern about black and dark hair dyes. I am wondering how you managed to do colouring and perming without gloves.How strange about that lump behind your ear, the GP's comment and then having it disappear when you had your first chemotherapy.
Having a tumour at the back of your throat must have been very painful. Having had symptoms that were otherwise explainable before your diagnosis sounds about right. My breast cancer surgeon told me when I was diagnosed in 2005 that she thought mine had started about four years before, judging by the size. All I know is that it appeared to come from nowhere and was large. It is so frustrating not to be able to know what caused your cancer. There are a lot of risk factors but that does not necessarily mean they caused your cancer. From what you have said, it looks as though we all have to keep an eye on fatty cysts.
I was interested to read the word indolent in your post because this afternoon when reading about lymphoma I was very interested to learn about indolent lymphoma and the aggressive lymphoma. I was quite surprised to discover that the indolent one cannot be cured but the aggressive one can. It is usually the exact opposite with cancers. Does it really mean that aggressive ones, once treated, will never return? I hope all will be well with you for years to come, as I understand the indolent ones can go into remission for a long time.
I was wondering how Janette's three children, your step children, were doing after their mother's death. They cannot be that old. I do so hope they are managing to cope and that they are getting plenty of support.
Take care.
Sylvia0 -
Hi Sylvia
I thought the more aggressive any cancer is the more sensitive it is to chemo and radiation. In the case of Lymphoma indolent cells are not that different from normal cells and therefore escape damage from chemo. Aggressive cells are really really abnormal and tend to divide faster, thus the chemo really hits. Children's cells are dividing really fast and they are good candidates for cancer cures. That is my understanding anyway. Aggressive lymphoma, the most common of which is DBLC is cured 50% of the time with first line chemo. If they relapse then they go to transplant which usually does the job. The big risk with indolent lymphoma is that the longer one survives the more liable the cells are to transformation to become aggressive, which does not bear a good prognosis.
It was interesting what you said about the doctor thinking that you had breast cancer for about 4 years. Prior to my meeting with Janette in 2004 she had been working day and night to finish her thesis and at the same time her daughter had become seriously ill with what they thought was a brain tumour. She lost lots of weight during this time, simply through not eating. During 2004 she went back to her normal healthy weight. In February 2005 she said that she thought she was pregnant and said "if not something is going on". She wasn't pregnant. In march that year she became very ill with terrible tiredness and headache. The GP did blood tests and they found her Mean corpuscular volume (MCV) was lower than it should be. She was sent to see a haematologist who said that they suspected an (awful) illness called myelodysplastic syndrome (MDS). She had a bone marrow biopsy which was ok and a brain scan which was ok. She gradually got better without treatment. Personally I think that was the start of her breast cancer. I often think that if only they had did a full body scan they may have found the cancer developing.
It is hard to know how my step children are doing. Their father is from a very stiff upper lip background and what with going to public school that has been reinforced. Mind you, the youngest commented how well I was doing considering my wife had died, which surprised me considering her easily I am moved to tears. Her children are Matthew (27) Daisy (24) and Alex (22). I am off to London in the morning for a few days with Alex and am really looking forward to it.
Michael
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Hi Michael,
I would like to thank you for starting the charity. What a wonderful way to remember Janette. This TNBC seems to be the cinderella of breastcancer and it is brilliant that you will be raising awareness of this unpredictable cancer.
It is interesting to hear from the partner of someone with TN. I joined this forum for information but also so that when I was worried or feeling negative I had somewhere to express those feelings. I don't want to put all that stuff on my husband's shoulders. We live in Ireland and do not have family near and so he has been the main person in my life that has been dealing with this cancer stuff for the past 2 yrs. He also has been sorting lots of practical and emotional issues for Leigh, our 26yr son with Asperger's. Now his brother has been diagnosed with cancer with mets and is not expected to live out ths year. I worry for him and being able to say that here helps me be more positive and supportive.
I also visit a support centre that has a men's group that includes many men whose partners have died from cancer. I am not sure what happens at their meetings as for the moment women are banned [after they have cooked a huge breakfast] but it is always well attended.
So I think what I am saying is that Janette was a beautiful and caring person and I'm sure she would not have wanted you to have those if only thoughts or extra worry. What you are doing says it all and thank you. Anything that can draw attention to TNBC will help and hopefully someone, somewhere will discover some treatment for us.
I hope that you enjoy your time with Alex
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Dear God: Let me give you a list of just some of the things I must remember to be a good dog.
1. I will not eat the cats' food before they eat it or after they throw it up.
2. I will not roll on dead seagulls, fish, crabs, etc. just because I like the way they smell.
3. The litter box is not a cookie jar.
4. The sofa is not a "face towel."
5. The garbage collector is not stealing our stuff.
6. I will not play tug-of-war with Dad's underwear when he's on the toilet.
7. Sticking my nose into someone's crotch is an unacceptable way of saying "hello."
8. I don't need to suddenly stand straight up when I'm under the coffee table.
9. I must shake the rainwater out of my fur before entering the house-not after.
10. I will not come in from outside and immediately drag my butt.
11. I will not sit in the middle of the living room and lick my crotch.
12. The cat is not a squeaky toy so when I play with him and he makes that noise, it's usually not a good thing.
P.S. Dear God: When I get to Heaven may I have my testicles back?0 -
Hil linali
Thank you for your support. I have often heard it said that being a carer is harder than being the patient and having experienced both I can safely say it is true. I don't think you should worry about burdening your husband. I am sure he wouldn't want it any other way.
Michael0 -
Hi Linali, I totally agree with Michael, my husband was brilliant and still is. We do need to lean on our loved ones for support.
Cathy Stone
Sharing is healing.I hope you are all having a peaceful weekend.
Bernie
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Hi Sylvia and everyone
I hope everyone is ok and enjoying the seasonal weather (if you are in the UK). We have only had rain once this week, which is making a very nice change.
I haven't been on here so much lately, which I think is probably a good sign that I don't need the support quite as much as I did. I had my last surgery in May, and am still experiencing quite a bit of pain, and fatigue which I had hoped would have cleared up by now. My doctors tell me to rest - but they don't have two small children to run around after! The summer holidays have come at a good time though, because we don't have to be up quite so early to do the school run :-).
Thank you for the jokes Sylvia and BernieEllen, and Michael I wish you all the best with you charity. Your wife sounds like a very special woman and what a wonderful way to mark her life.
I hope everyone is enjoying what is left of the weekend,
Love to all
Caroline x
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Hello Michael
Many thanks again for a most interesting post. I think it is true that aggressive cancers respond well to chemotherapy, but I do not think that it is always completely successful. TNBC is considered aggressive, but I think all cancers are aggressive to some degree. I do not think it is any picnic being diagnosed as triple positive, although I would think it is better now with access to the monoclonal antibody trastuzumab (Herceptin). What a fight women here had to get it and it is said to cause heart problems. I have a friend who has been treated for this and so far she is doing well. I know that docetaxel (Taxotere) is supposed to be very effective with triple negative. Nevertheless, when I had my treatment, with chemotherapy before surgery, my oncologist told me that chemotherapy alone would not be sufficient on its own to deal with my breast cancer. The Taxotere did shrink the cancer, but certainly not completely. I needed the surgery and then the radiotherapy. It is true that aggressive cells are really abnormal. All any of us can do is keep our fingers crossed.My oncologist is very good at discussing things with me and she did explain to me, when I was asking about TNBC, that my breast cancer did not necessarily begin with that receptor status. She explained that cancer cells mutate. Doing research, back in 2005, I read about basal-like breast cancers and how most TNBCs, but not all, are basal-like. I then asked at the hospital whether mine was basal-like. This was after I had finished my treatment and my tumour had been analysed and sent away for permanent storage. I tend to think they had not looked for basal-like and given the percentage of triple negative breast cancer cases with basal-like characteristics, I was told it probably was. I also found out for myself that TNBC is a bit like genetic breast cancer. The difference is that with the genetic the genes are already damaged, but with TNBC the genes have somehow been silenced and cancer cells allowed to proliferate. I remember reading about the p25 gene being silenced by a process known as methylation and thus allowing cancer cells to proliferate. I remember in the early days all I wanted to know was what had caused my cancer, because I had always looked after myself. I wrote to Professor Karol Sikora, a well known and renowned oncologist and he told me to concentrate on the fact that I was in remission. I think that was good advice. However, sam52 and I think there was a possible connection between undiagnosed hyperparathyroidism and the development of breast cancer. There is some Swedish research to back this up.
I am quite sure that stress plays a part in the development of cancer. I think it is probably something to do with unbalancing our hormones. When we are stressed we have too much cortisol floating around. People will tell you that their cancer developed after a long period of stress. That was certainly my case. It looks as though Janette had put herself under a lot of stress finishing her thesis at the same time as she was trying to look after her seriously ill daughter. She obviously overdid things.
I was most interested in the illness that the haematologist thought she had. I must admit I had never heard of it. I agree with you that she probably had cancer in her body and she obviously knew that something was wrong. She was probably not having mammograms because on the NHS they start at 50+ and are not always reliable anyway.
I do hope the children will get some tender loving care. They do need it at this time. Is Alex a boy or a girl?
I do hope you have a lovely time with Alex and I do hope this thread is helping you.
Thinking of you
Sylvia0 -
Hello Bernie Ellen and linali,
I was so glad to see that you are all connecting with one another.That is how I want the thread to be. There is never a dull moment with you Bernie and it is a joy to have you making us all laugh. That centrre of yours, linali sounds such a useful place. I do think the men and women should get together from time to time as all cancers have a lot in common.
I hope you are having a good weekend.
Best Wishes,
Sylvia.
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Hello Iz_and_Lys_Mum (Caroline)
It was so nice to hear from you. Here in Exmouth we have had a nice week of dry warm weather. What amazes me is how quickly the soil dries out. In the garden it was so wet and now the soil is hard and dry once again.Please post when you can, because your experience through your treatment is invaluable to the newly diagnosed. If they can come to this thread and see us all having gone through treatment or going through treatment, it will encourage them to know that they can get on with the treatment and we can support them as they go.
I was so sorry to know that you are still experiencing pain and if it is of concern to you, you should get it checked. You said that you had surgery in May and I was wondering what kind of surgery you had, since you had DCIS in August 2010. Did you have a lumpectomy or a mastectomy. Did you have some kind of surgery for reconstruction? Anything that is of concern should be checked.
If you have had chemotherapy or radiotherapy, the fatigue can go on for a long time. Your doctors give you good advice when they tell you to rest. This will help with your immune system. I can understand how difficult it must be to get rest when you have two small children. How old are they? At least it is the school holidays, so you do not have to be up quite so early for the school run, but, of course, you do have to keep them occupied.
I was wondering where you are in the UK. I do hope you have had good treatment and good support since your diagnosis.
I know that all of us are very impressed with Michael and with the charity that he wants to set up in his wife's name. I hope that all of us are of some help and comfort to him at this very difficult time.
Please let us know if we can help you in any way.
Best wishes
Sylvia0 -
Hello Lint_Roller_Derby
Thank you for your PM. I am going to take a break to do a few things and then I shall answer.Thinking of you
Sylvia0 -
Hello Dulcie
I do hope you have managed to have a nice weekend. I hope to hear from you soon.With fond thoughts
Sylvia0 -
Hello FernMF
We shall all be thinking of you on Tuesday July 31st when you start your chemotherapy.Fond thoughts
Sylvia0 -
Hello Michael
I just wanted to say that I did not realise that MDS was formerly known as a pre-leukaemia condition. I have often read that the breast cancer treatment we have can result many years later in leukaemia. This is something else to worry about.What we have to do is live every day to the full.
It is so interesting to be getting views and experiences from the point of view of the carer. With you we have a sufferer and a carer and with Youngmommy we have a carer who has been taking care of his young wife.
Thinking of you.
Sylvia
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THANKS . . going to go pick up the pre-steroids now . . .
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Hi Sylvia.
I wish that I had had this forum when Janette was diagnosed. I am learning quite a lot here and if I get this charity off the ground I hope to make use of it. Much of what I read here is thought provoking which I think is good rather than the passive (but good) information provided by the likes of MacMillan. Something I have thought about in the last few days; are there helplines where one can call and speak to someone who is experienced in TNBC? ( I wonder if I should have used capitals, I have come across people in the lymphoma community who refuse to capitalise NHL, saying they will not give the disease that importance. ) If there isn't then I would make that a goal of the charity. Setting up the charity is a real challenge for me, taking me way out my comfort zone. I am an ideas person not an implement or, that was Janette. Still I will give it my best shot. We are having a memorial event at our house in Ireland for the people who couldn't get to England for the funeral. That is 22 September and I am going to work towards launch that day.
I was interested in the information you were told about the early receptor status of the cancer. When Janette's cancer returned it was found to be er+.
I haven't mentioned before that Janette was a smoker (not a heavy one) but gave up 3 months before diagnosis. She also took up jogging at the same time, she was probably worried about putting on weight, anything bigger than a size 10 would have more than she could have tolerated ;-)
I went to the grave yard where Janette's father is commerated as well as her grandfather and grandmother. Her granny died when she was 49. I got looking at many of the headstones, many of them extended family of Janette's, and the women were dying young and I thought: this isn't how it is supposed to be, statistics tell us that the men die first not the women, then I look at my own family and my uncles wife died of breast cancer at 49. My own mother died at 91 (she was an unmarried Mum and had to leave Ireland to have me in 1952.) Apart from having her appendix out when she was a child, bring knocked down by a motor bike outside Harrods (only the best for my Mum) and having a gall bladder removed was in perfect health until she had a stroke at 89.
I must apologise if my spelling is up the wall I am not sure if the spell checker is doing its job. Oh BTW Alex is a boy
Michael0 -
Hello Linali
I was interested to read that you have a 26 year-old son with Aspergers.....my son of 28 also has Aspergers; I wanted to endorse what Sylvia wrote about stress being a contributory factor for bc - I am sure you would agree that being the parent of someone with an autistic spectrum disorder is a very stressful business.
When I was going through chemo I had to pretty much leave my son to his own devices as I am a single parent - in practice that meant he spent all his time on the computer,which was not ideal.
I wish you all the best.
Sam
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Hello Sylvia
I have just returned from the weekend with my father (I am finding it harder and harder and wish my two brothers would do their share......)
I have to get up early tomorrow to drive my cat to an appointment with a neurologist (!!) - he has been referred by my vet to some vet specialists near Luton, as he is displaying some strange symptoms. He is almost 17 and has been behaving very weirdly for the last couple of weeks.I am not looking forward to an hour or more driving with a howling cat........
I will post more when I am able!
With love,
Sam
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Hello everyone and good morning
Here we go with the start of another week. I wonder what it will bring us all. There are some really interesting posts appearing on this thread.
A special hello to chatterbox2012, sam52, FernMF. I shall be replying to these later on today, as I have various things to deal with until then. In the meantime, here are a few more photographs from the grounds of our apartment complex. They are all of various kinds of hebe shrubs. They are good to have as they bloom for a long time.
I shall have some postings from CANCERactive, as I have just received my latest e-mail from Chris Woollams. I shal be glad when I receive my next copy of their magazine, Icon.
Until later today, thinking of you all.
Sylvia
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