Calling all triple negative breast cancer patients in the UK

sylviaexmouthuk

Hello Maria

Thank you for your post. I know that the games section of the breastcancer.org forum must be very popular, according to the number of viewings. It must be another way for people to switch off, relax and just have some fun.

I do understand that people are not always in the mood to post. I really do believe that none of us should let BC take over our lives.

I was very interested to know that your husband had bought you a Kindle and that you have really taken to it. I know that it is very popular over here. I do not know whether I shall ever get one as I do love books and to read, and for the moment, I cannot see myself reading with Kindle. I can understand how useful it must be to have books appearing on-screen within a couple of minutes.

I am not really into all the latest technology and do not spend a lot of time on the computer, but I do find Google very useful, as I have a very inquiring mind.

I was interested to know about the Book Depository and must admit I have not used it. I find that Amazon is often the cheapest place to buy new books with free delivery. Like you, I have a wide range of interests when I read, but lately I do not seem to read as much as I used to. I often find it difficult to find a new book that really attracts my interest. I seldom read fiction these days but in the past I read the bulk of the English classics, not to mention French, Spanish and American classics. I really liked Russian writers and Crime and Punishment by Dostoevsky is probably my favourite book.

I used to read all the P D James crime fiction but have not read any of late.

I do not think it really matters what you read, as long as you enjoy reading it. I have read Kate Atkinson in the past and she is very popular here in the UK. I was interested to know that you have been reading the Inspector Wallander books. I have not read any but I do know that the TV series here in the UK is very popular. I have not seen the series, but given your description of Inspector Wallander, I think I might start watching it. I would think there are many people in the UK suffering from work exhaustion and existing on cups of bad coffee and junk food, with vague promises of a healthier lifestyle. I have just heard on the radio that women in the UK are top of the charts for obesity in Europe, with 25% of them being obese. Men in the UK are not far behind at 22%.

I hope everyone will have a good, relaxing weekend and switch off from everything they find stressful.

Best wishes
Sylvia

Maria_Malta

Not sure if your obesity statistics are correct Sylvia..I thought both Maltese men and women had that (doubtful) honour!

sylviaexmouthuk

Hello Maria

I think my statistics are correct. Malta came in as number three! Ireland is number two. They have been going on about it all weekend. The slimmest are Romanian women. The French also seem to be high on the list for not being overweight.

Type 2 diabetes also seems to be out of control in the UK. Our National Health Service seems to be deteriorating. It is not what it used to be.

Best wishes

Sylvia

sylviaexmouthuk

Hello everyone

I hope you all had a good weekend and that our American ladies had a good Thanksgiving and Black Friday. I suppose we can now expect the big build up to Christmas.

I hope you are all beginning the week full of optimism as you continue on with your various treatments. We shall all be thinking of you bak94 on Wednesday.

Maria, are you starting radiotherapy this week? If so it should all be over before Christmas.

Wishing you all the best
Sylvia

Maria_Malta

Hi Sylvia, starting radiotherapy some time this week, hospital should be letting me know tomo, latest Wednesday, as went in to get measured and marked today...onc told me 3 weeks should do the trick, but not sure whether that means 21 days, or less..

Yes, sending positive thoughts your way, Bak!

mccrimmon324

Good Luck on your radiation Maria, I'm on my 4th out of 6 weeks, only slight red areas and itchy but nothing painfull, a breeze for me compared to chemo. 

Did you have a lumpectomy or a masectomy? 

BAK, when's your surgery?

BernieEllen

Hi everyone, good luck on the rads Maria.  Mccrimmon, not long to go.  I did burn but nothing i couldn't live with.

Sylvia, thanks again for all the info. 

mccrimmon324

Bernie, I love you pic, I see some hair there!  I'm so excited to have hair again, or at least having it grow again, I still look like an elderly man.  LOL 

BernieEllen

Hi mccrimmon, have hair coming back and now have new teeth. lol

mccrimmon324

Did Chemo hurt your teeth? Mine have been feeling weird or overly sensitive but not too bad.  I'm hoping it's just after effects of the chemo and will eventually go away. 

BernieEllen

Hi mccrimmon.  I had to have all my teeth out before i could start chemo.  Had a really bad mouth infection that wouldn't heal despite antibiotics.

Maria_Malta

Hi Bernie and mccrimmon... thanks for radiation wishes... BernieEllen, how do you feel now that you have finished with treatment?  When did you stop chemo?  My hair is growing v fast, last chemo 12 August (I don't think I'll ever forget that date!) and it's a funny texture, my husband thought my head looked like a tennis ball upto about a fortnight ago, and I still wear a wig when I go out, I'm hoping I'll feel comfortable to go without soon.... then the decision will have to be whether to dye or not to dye, as hair is pretty white (I'm 56). And what sort of follow-up did your doctor suggest?  I get the feeling that many women on these boards (esp in the US), get scans/Pet scans after treatment on a fairly regular basis, whereas here in Malta I think that in a case like mine where chemo seemed to get rid of the tumour entirely, they hold back on scans to start with, and you visit the oncologist on a regular basis, but do not have any other form of testing, unless there is suspicion of recurrence... a friend was only given her first ultra sound as part of her check-up about one and a half years after the end of radiotherapy.  I wonder what happens in Ireland, and what was your experience, Sylvia? mccrimmon, I had a bmx, but the fat was kept to give me a kind of reconstruction, so in effect I now have 2 small 'boobs'.  I've had to wait on the rads to allow my new grafted areolas to heal... Glad to hear that you are finding radiotherapy so much easier to deal with than chemo... I can't wait to be through all this!

mccrimmon324

Maria, the reason I asked about what type of surgery you had was because I believe in the US it is not common to have radiation after a BMX.  I've read on here that it will help if given after a BMX so happy to hear your getting it.  As far as tests and scans, I don't know about anyone else but unfortunately I don't think I'll be getting any scans or tests other than my regular mammogram unless, god forbid, I have any symptons. 

Bernie, so sorry to hear about your teeth but glad to know you've got new ones.  My husbands father had throat cancer years ago and they had to pull all of his teeth before starting radiation. 

sylviaexmouthuk

Hello Maria_Malta

Thank you for letting us know that you will be starting radiotherapy sometime this week. I was glad to know that you have now been measured and marked. It looks as though you are having standard radiotherapy after mastectomies, from what I can gather from the UK. I had three weeks of radiotherapy after a mastectomy. It was, in fact, three weeks plus boosters. The boosters were added to the normal radiotherapy sessions. The three weeks means every day for five days and then the weekend off. This means it is in fact fifteen days of radiotherapy. That is how it was for me. I think you will find it so much easier than the chemotherapy.

We are all thinking of you and wishing you well.

Best wishes
Sylvia

sylviaexmouthuk

Hello mccrimmon324

I was glad to know that you have now passed the half way mark with your radiotherapy. I was surprised to know that you are having six weeks of radiotherapy. I think that in the UK that would be considered quite a lot. The women that I know here, whether they had a lumpectomy or a mastectomy, seem to have had three weeks with boosters.

You and Maria will be able to support each other and describe your experiences. You will finish your treatment not too long before Maria finishes hers.

I was interested to read that you had mentioned to Bernie that your teeth were feeling a bit strange. I am sure that the chemotherapy treatment must affect our teeth, because we all know how sore and awful our mouths can become during treatment. I know that when I was diagnosed I was told to get a dental check-up before I started treatment, because I would not be able to have any during my treatment. I did have gum problems before I was diagnosed with BC, but I am certain they have become much worse after chemotherapy treatment. This year I have been having real problems with my gums and have had to have two teeth removed because of worsening periodontal disease. About two months ago I had a nasty infection in my gums and had antibiotics. Today I had to go to the dentist with another infection and am back on antibiotics. I hate all this as I thoroughly dislike all medication. Apparently a cyst has formed under where I had a tooth removed, but the dentist has assured me it is a cyst and not anything cancerous.

I was interested to know about your husband's father, as my uncle died of throat cancer last year. He refused all chemotherapy, radiotherapy and disfiguring facial surgery, which included having all his teeth removed. Watching what he went through made me realise that there are cancers that are much worse to deal with than BC.

Keep looking forward. Your treatment will soon be over.

Best wishes
Sylvia

sylviaexmouthuk

Hello BernieEllen

Thank you for your post. It is my great pleasure to post as much information as I can to help everyone. With this disease we have to be informed.

I know how much pleasure it gives everyone to watch their hair growing back after chemotherapy. I also did the same. Let us know the twists and turns of your hair growth. My hair was almost black when it started growing back and was really curly and bushy. It soon got back to normal again.

I think you showed enormous courage in having to have all your teeth removed before starting chemotherapy. What caused you to have such a bad infection that it would not clear up? Did you have to go into hospital to have all your teeth removed and were they all removed at the same time? That must have been quite traumatic and such a shock to your whole system. I suppose that must mean you went through chemotherapy with no teeth. I really do admire your courage. I also admire the fact that you can joke about it. What a fine woman you are.

What are you doing with yourself these days? Do you like autumn and winter?

Best wishes
Sylvia

sylviaexmouthuk

Hello Maria_Malta

I thought you would like to know my own experience after I had finished chemotherapy, surgery and radiotherapy. I had, as far as I remember, a CAT scan and a bone scan, the same scans as I had before treatment. I then went on to check ups every three months, alternating between the oncologist and the breast cancer surgeon. These were just physical check ups of the remaining breast and going over the mastectomy area and under the arms, looking for everything to be smooth. I also went to mammograms every two years. After a couple of years I went onto physical check ups every six months, alternating between the oncologist and the breast cancer surgeon. After five years I understand that here in the UK a person is normally discharged but this year, when the breast cancer surgeon mentioned the possibility of discharging me I asked to remain. The oncologist, whom I last saw in April said she was quite happy to keep me on without my requesting it, so I have an appointment in 2012.

I did ask about scans etc., but was told they were only done if a patient thought there was a problem. In a way, it is not a bad thing because we are probably better off not being exposed to radiation.

I also asked about blood tests, but was told that they were only good for that particular day. I am a bit confused about that as I would think blood tests, done regularly, looking for cancer markers, would be a good thing. In fact, I think this would be a good idea for mass screening. Would it not be better to trace cancer markers and start some kind of treatment instead of waiting for tumours to devlop.

Wishing you good luck Maria

Best wishes
Sylvia

sylviaexmouthuk

Hello everyone

I just wanted to wish bak94 the very best for tomorrow when she will have her surgery. We must all remember that bak94 is going through her treatment for the second time and we are all with her all the way.

I was surprised to learn that radiotherapy is not given in the US after a mastectomy. I was told by my oncologist that radiotherapy was the finish up for treatment in order to mop up any stray cancer cells.

To christina1961, and suze35, I hope that you are managing as you go through your trials.

To suze35, I did like the quotation that you put on another thread about hope. I found it very profound.

To sam52, I hope your week is not too hectic.

Best wishes
Sylvia

sylviaexmouthuk

Hello again,

This is the quote that Suze35 posted on another thread and that so impressed me. I thought you ladies would appreciate it.

Thanks to Suze for posting it.

Jerome Groopman, MD in his book: "Anatomy of Hope":
"Each disease is uncertain in its outcome and within that uncertainly we find real hope, because a tumor has not always read the textbook, and a treatment can have an unexpectedly dramatic impact. This is the great paradox of true hope. Because nothing is absolutely determined, there is not only reason to fear but also reason to hope. Hope is a belief and expectation."

Sylvia.

sylviaexmouthuk

Hello everyone,
I hope that you are all doing well.

I thought I would post some more snippets of information.
I have been reading a newspaper article about memory loss and I found that one of the culprits is chemotherapy. I think we all know about chemo brain and how we feel that our memory is not as good when we are going through treatment,so I thought this would be of interest.

Trouble with our memory can be added to the list of nasty side-effects of chemotherapy. It is stated that chemo brain affects up to half of breast cancer patients. It is thought that chemotherapy affects healthy brain cells and knocks out their ability to function properly.

According to one study it was discovered that breast cancer patients who had had chemotherapy treatment had a great deal less activity in parts of the brain responsible for memory and planning compared to those who were not treated.

Another study linked the widely used chemotherapy drug fluorouracil(5FU) to the deterioration of healthy brain cells. Problems can improve, but can take up to ten years.

Taking aspirin may apparently be a way of preventing or treating chemo brain. This is because it maintains or increases blood supply to the brain cells thus increasing their oxygen supply.

The article warns against taking aspirin without consulting a doctor.

What do you think.

sylviaexmouthuk

Hello again,

I have been catching up on other threads, as I think it is important to keep up to date with information.

Have any of you facing radiotherapy been offered tomo therapy? It is not something that I have heard about in the UK. I would be interested to know if women are being offered different kinds of radiotherapy.

 Best Wishes,

Sylvia.

christina1961

Just a quick hello before I drag myself into my office.  I am struggling with fatigue from the chemo treatments.

Sylvia, you are correct, many times radiation therapy is not given after a MX.  Usually it is recommended if there are 4 or more nodes positive and/or a larger tumor. In my case, with the remaining 2 cm tumor and 2 nodes, my RO said an argument could be made either way, particularly with the recent data (I think it was a trial called MA126?- can't remember - I read it at the time of my decision making process) that showed a benefit for those with 1-3 positive nodes.  I opted for it.    I had four fields of radiation so I suppose that they radiated the axilla area although I don't really know.  He did tell me it was treated but they did not "boost" it.. I found myself intimidated in the presence of my RO even though he is very polite, caring,  and doesn't rush.  He is, however,  "movie star" handsome as they would say here in the southern US. I know that is a silly reason to become intimidated but I think it has something to do with it.   I have the hardest time communicating with him. I am still irritated with myself for not being more assertive with him.

.

mccrimmon324

Slyvia, I'm wondering about the use of asprin, Isn't Christine involved in a study where she's taking asprin daily along with Chemo to prevent a recurrance.  I'm going to ask my doctor about it.  And I'm assuming by asprin they mean the real stuff, not tylenol or advil, correct? 

BernieEllen

Hi to everyone, as per usual i struggle to keep up.

I also had six weeks of radiotherary, - seems quite normal here. finished three weeks ago.

Hi Marie, it took me awhile to get over the chemo, was still having funny heads for weeks after.  I also finished the chemo in August. They seem to do a lot of check ups here, i have two next week.  I know i will have another mammogram next March.  don't know about any other scans.

My hair is also growing back white - will have to wait and see. 

sylviaexmouthuk

Hello christina1961

Thank you for your post. I did like your smiley. If there is one lesson I have learned in life it is to be assertive and especially when it is a matter of your life and health. Never be afraid to say what is on your mind and do not let people get away with things because of good looks. I think on the thread we could probably have an interesting discussion about how women feel being treated for breast cancer by a man. I am not sure I would have felt at ease if this had been the case for me. I still would have been very assertive but I would have felt a bit uncomfortable in myself. I felt so lucky to have a woman breast cancer consultant and a woman oncologist. I feel they were exceptional in the way they treated me. They treated me with respect and answered all my questions. I really feel that with breast cancer women are probably more understanding.

Thank you for your information about mastectomies and the decision to do or not to do radiotherapy. I had a large tumour and one positive node and I was told that I needed radiotherapy. Although radiotherapy has its downside, I somehow felt better knowing that it was zapping any stray cells. I do not think I would have been comfortable with a lumpectomy, even if I had had a small tumour. I suppose we all have to listen to our consultants, take in their advice, and then make our own decisions.

Do you know anything about tomo radiotherapy? My understanding is that it is carrying out radiotherapy in slices.

Christina, never be intimidated by anyone. We are all born equals.

I do feel for you, Christina, doing this chemotherapy. How much longer will it go on? I do admire you for going to work as well. Is your work stressful?

Best wishes
Sylvia

mccrimmon324

I saw my RO yesterday and asked about scans, he said to me that I fall right on the edge of scanning.  I suppose the earlier your BC the less they want to scan.  The higher your stage the more scanning would be required. 

sylviaexmouthuk

Hello mccrimmon324 (Heather)

Thank you for your post. I cannot remember whether Christina is taking aspirin in the trial with eribulin. I do know that when I was first diagnosed I did see a private integrative doctor and she was talking about trials with high dose aspirin. I am not sure what is going on with aspirin and BC at the moment.

I am not quite sure what goes into Tylenol or Advil, as they are not brand names that we have here in the UK. When I buy any painkillers I do not buy brand names. Here in the UK, I buy aspirin as aspirin and you can buy either ordinary or soluble. There has been a lot of talk here about how we should all perhaps take low doses of soluble aspirin to prevent strokes. Apparently the Swedish people are encouraged to carry soluble aspirin on them at all times in case of stroke or heart attack!! Apart from aspirin we have paracetamol for general pain and ibuprofen for muscular pain. I try not to take anything but prefer aspirin as it has been around for a very long time.

I would be interested to know what your doctor has to say about aspirin and its use in breast cancer.

I think that you get a lot of respect from doctors when you ask questions. It does show that you are taking an interest in what is happening to you.

Best wishes
Sylvia

sylviaexmouthuk

Hello BernieEllen

Thank you for your post. I was surprised to know that you had six weeks of radiotherapy, but then all countries have different criteria and even different hospitals. I suppose since we are all different in our breast cancers as well, even though they may be the same type, we can only listen to our consultants and decide what to do. I think a lot of decisions in the UK are based on cost and age, because of our NHS system. We do not have a good record for cancer. As for scans, there is the positive and negative. I do not feel I would be very happy having to undergo regular scans because of the radiation.

Good luck on your check ups next week. You will probably then have regular check ups and mammograms as I mentioned in a previous post. I remember that at the first mammogram after treatment I also had an ultrasound, but two years later, when I had the next mammogram I was told they had done away with the ultrasounds.

Was your hair grey or white before chemotherapy? My hair was brown before treatment, grew back looking black and then changed to my normal brown. I was thinking back to how long I wore a wig and it was eighteen months. I remember my specialist breast cancer nurse telling me that I would probably wear it for that length of time.

If I were you, Bernie, and the same goes for Maria, I would not think about dyeing my hair. Your hair will be in a fragile state and I think the experts warn about not dyeing or perming your hair for sometime after chemotherapy. There have been a couple of stories in our press about two women going into comas after using dark hair dye of a well known brand. I think one of them at least may have died. I do not think they had had breast cancer. There has always been a suggested connection between hair dye and breast cancer, especially dark colours.

Best wishes
Sylvia

sylviaexmouthuk

Hello bak94

I am sure everyone on the thread is thinking about you today. I know I am and hoping everything goes well and that you will soon be feeling relieved that another hurdle has been overcome.

Best wishes

Sylvia

mccrimmon324

Sylvia,

Tylenol is Acetaminophen and Advil is ibuprofen, we generally buy the generic brands too, just easier to say,  I try not to take anything either, especially now that I've gone thru chemo but I've always been a ibuprofen taker as asprin usually upsets my stomach but I think I'm going to switch to asprin now for sure, just have to remember to eat something small with it.  Wonder if that will help. 

I don't know how much my doctors respect me, I suffer from severe anxiety when I'm with them (all new since diagnosis) sometimes I'm afraid it's getting on their nerves.