Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
Thank you for taking the time to post and to let us know how you are faring now that you have started on paclitaxel (Taxotere). I think lots of people suffer from problems with the mouth. I did not have too many, just a little dryness. I did some research prior to staring chemotherapy and found out about a product called Biotene. I think I got Biotene toothpaste and mouthwash. It was not a common product back then, but now I see it on the shelves in pharmacies. I think the easiest product is a mouthwash made up of some bicarbonate of soda and warm water. I often use it to rinse my mouth after cleaning my teeth.
Sore mouth and mouth ulcers are a common complication of chemotherapy, particularly after having treatment with anthracycline drugs. You just have to take great care, extra care, with oral hygiene during chemotherapy. I remember being told on diagnosis that I needed to see my dentist and get everything seen to before starting chemotherapy, as I would not be able to have dental treatment during chemotherapy. Someone I know went to the dentist during chemotherapy and ended up with a nasty infection. I have read that it is best to brush with a soft toothbrush and use a mouthwash after each meal.
I was wondering whether you were given an injection of Neupogen or Neulasta after your chemotherapy to help keep the white blood cells up. Some women are fine with this and others get bone pain. I had Taxotere for three months, the second three months of my six months treatment and noticed it was during this time that my eyebrows and eyelashes disappeared. I did not notice it at the time but a bit later I noticed that the soles of my feet did not feel quite right. I sought advice from my GP, a podiatrist and my oncologist and all of them said it was peripheral neuropathy of the feet. My oncologist said it was definitely caused by the Taxotere and that there was no cure. I have learned to live with it and it is hard to describe the feeling in my toes and soles of my feet. They often feel stiff and numb and as though I am walking on screwed up paper or gravel. I often bathe my feet in a bowl of warm water with plenty of sea salt and bicarbonate of soda in it. I then put on a lot of moisturiser and that all seems to bring a lot of comfort.
I am going to sign off for a minute and will then continue.
Thanking of you.
Sylvia xxxx
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Hello Mary again,
I just wanted to say that this strange taste in the mouth is a very common side effect of the two Taxane drugs. There is not much you can do about it. I think it is easier to get through chemotherapy by eating little and often. I seemed to enjoy mashed potatoes made with soy spread and soy milk as well as plain poached cod or haddock, I think you need to eat whatever it takes to get you through.
I did not experience any headaches, so I cannot comment on that.
In the little book on cancer, all the possible side effects are listed and they include the following,bruising/bleeding , nausea/vomiting, sore mouth and mouth ulcers, hair loss, premature menopause, fatigue, diarrhoea, constipation, problems with veins, damage to your heart, cystitis, damage to nerves, redness to the hands or feet, skin and nail changes, red urine,( epirubicin) can cause this for 24 hours after treatment, dizziness/hot flushes, temporary taste changes and so on.
It is good to know about these, but remember you may not get them. Fatigue and hair loss I would thin are inevitable.
Thinking of you,
Sylvia xxx.
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Hello Adagio,
It is always nice to hear from you, I am so glad to know that my nine years since diagnosis inspires and motivates you,. That is what the thread is all about.
I was glad to know that you are feeling so much better and that you now have some relief from the pain in your arm I can understand that you want to think about another cataract operation. I am very hesitant about all things medical and would only consent if there were really no choice.
The weather has been lovely here for a week or so, but we are really in need of some rain for the garden.
The sea front is really packed today and people are literally cooking themselves on the beach. They will regret it tomorrow.
Fond thoughts
Sylvia, xxx.
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Hello Mary,
I was glad to know that you are reading the book about the Anti-cancer diet, I read it some time ago and found it most interesting. You can get excellent protein from fish, you do not need meat and it is not the best source of protein as it has a lot of fat, even lean meat. I have never been a great meat eater so it was easy to cut it out of my life, which I was doing even before I was diagnosed with breast cancer. I also have fresh enriched soy milk, fresh enrich soy yoghurt and frozen soy beans. There is also a lot of protein in nuts and beans, as well as seeds and I eat them all regularly. If you are used to eating meat, it is best, I would think, to cut them out gradually.
Wishing you well.
Fond thoughts.
Sylvia xxxx
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Dear Carolben
How are you? Have realised you haven't posted for a while and found myself thinking about you and hoping you are feeling well. No doubt you are busy, or taking a break from the boards, but I just wanted you to know you have been missed! I know Sylvia had also enquired how those of us who had gone quiet were keeping. I do hope all is well with you,
Fond thoughts
Norma x
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Dear Carolben
How are you? Have realised you haven't posted for a while and found myself thinking about you and hoping you are feeling well. No doubt you are busy, or taking a break from the boards, but I just wanted you to know you have been missed! I know Sylvia had also enquired how those of us who had gone quiet were keeping. I do hope all is well with you,
Fond thoughts
Norma x
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Hello Norma,
I have just read your post and do hope that we shall hear from Carolben soon and that she is doing fine. It could be that she has gone on holiday to visit family as we know she is very close to all her family members. This is a strange time of year for threads etc. as people are going away on holiday or just spending a lot more time outside in the sun, at least here in the UK where sunshine is rare. I know that it is winter in South Africa but I am not sure how cold it gets. I know that Carolben does not like the cold, so she may have escaped to hotter places.
I think linali (Lindsay) has gone to Turkey for a holiday and Susaninicking (Susan) living in Germany may be spending time at her holiday place in France which I know she loves.
I am sure we shall hear from chatterbox (Michael) in Northern Ireland but they are getting good weather at the moment so he may be enjoying the sunshine.
Adagio posted recently and she does give a lot of support to this thread.
I am not sure what has happened to Jackpot (Gill) as we have not heard from her since she sent that lovely photograph from Turkey of her swimming with dolphins. I do hope all is alright with her niece.
It is strange about InspiredbyDolce (Debra) in the USA as she was a very regular poster on this thread and the TNS.
As for peterandliz and sam52, I have no idea what has happened to them.
We do need to support Maryna8 and Marymargarethope through their chemotherapy journeys. If you two are viewing I do hope you have a good week this week.
Norma, you may be interested to know that I was in Waterstones yesterday and I always have a look at the health books. I bought a 2014 book entitled Beat Cancer by Prof. Mustafa Djamgoz and Prof. Jane Plant (anti-cancer experts, Imperial College London) - The 10-step plan to help you overcome and prevent cancer.
I have only just started to look at it, so I will post more details later.
Thinking of you.
Sylvia xxxx
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Hello everyone!
Yes, I too am a teacher Sylvia, seems to be a few in here! I teach primary, most recently y3, but have taught most year groups.
Today was the day I kick started my new eating regime, lots of anti cancer foods, and goodbye meat (and alcohol)! I found two great books, the anti cancer kitchen and one bite at a time. I think I will find it helpful to plan my week of meals at the weekend so know the fresh ingredients I need to buy. Hubby is even joining me but there is no way he will give up steak!
Feel very optimistic, my daughters nurse (Evie is still in hospital, her breathing is still not quite right) is a 7 year survivor with a very large tumour, and also found a lady in America with a 9cm tumour that also developed in pregnancy, she is 5 year survivor. This is good news, along with your 9 year anniversary Sylvia.
In my second week of cycle one and I feel ok, just a little tired. Mary, I will ask about why I am having FEC when so many others have TAC. I try to imagine the chemo like little pacmem racing around my body eating the nasties! I think the doc is mainly focusing on reducing the size to 5 cm for surgery but he did say he has seen bigger ones disappear completely. I am hoping that the broccoli, kale, cauliflower etc will also help it on it's way!
It seems a lot of people here have added extra stresses to deal with along with on going treatment or living with the thought of it coming back. Everyone seems so strong, you are all an inspiration and I am so glad I found this thread.
Much love
Marymargaret
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Hi Sylvia
Sorry for the delay in replying.
I must confess that I don't research the links that I post. I have a Google alert for any news items that are about Triple negative breast cancer and I subscribe to Mdlinks. I scan any information I receive and if I think it is relevant I post the link. I usually omit anything that is about mouse studies for the simple reason that mice have been cured of cancer for years but the results often do not translate to humans. I also usually omit stage 1 & 2 trials.
Michael
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Hello Marymargaret
It is true that there are quite a few teachers passing through this thread. We have Apandy (Anne) and sam52 in London and they are both teachers, but we have not heard from them in a while.
I was glad to know that you are trying to do your bit by making some changes to your nutrition. I think that what we eat and how active we are play an important role with trying to keep cancer at bay and at least we can take control of these two things. Controlling our environment is much more difficult. It is good too that your husband is going to join you in this.
It is good to hear about people who are surviving cancer for a long time. It encourages everyone to do their best to keep this disease at bay and shows them that it can be done. we have to remember that more people are surviving cancer than are dying from it.
I do hope it will not be too long before your baby Evie gets to come home to you.
I was glad to know that you are not feeling too bad at the moment and I do hope that will continue. Do you think you might get Taxotere after you have finished the cycle of FEC?
Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Thank you for your post and your explanation about the links. You must put a lot of work in researching and sifting out information. We are lucky to have you on this thread.
As I said in a previous post, I have just started reading a new book on cancer and it is divided into a ten step plan to help people overcome and prevent cancer. It is written by Professor Mustafa Djamgoz who is a Professor of Cancer Biology, and Professor Jane Plant, Professor of Geochemistry. Jane was familiar to me, through having read her book, Your Life in Your Hands, when I was first diagnosed. She first had breast cancer, hormonal, in 1987 at age 42. She I now 70. She had about five recurrences very early on and one at another point, but she is in remission. That is 28 years since she was first diagnosed!
I have been reading the Foreword and the part entitled Welcome. The Welcome part explains how this book happened, Jane's story and Mustafa's research about neuroscience solutions to cancer. It also explains how to use the book. Step one is entitled Inform Yourself. I have read this through once and there is an excellent explanation of how cancer develops and what it is etc. It is all about epigenetics and I found some of it a bit complicated, so I shall read it again.
It would be useful if others on the thread read the book in steps and we could then analyse each step together.
The title of the book is Beat Cancer.
I hope all is well with you.
Best wishes.
Sylvia
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Hello everyone,
I picked up on the following on page 32 of this book. It was about how thanks to this new science of epigenetics it is now known that cancer does not depend on individual genes but on the interaction between our genes and their surroundings and this is determined by our lifestyle and factors in the environment which can cause damage and/or alter gene expression. Apparently cancer causing genes may not become active unless there are particular conditions that switch them on. By the same token, if the conditions change, they can be switched off.
I was particularly interested in the mention of a 2005 trial with men who had a firm diagnosis of early stage prostate cancer but did not have immediate treatment but had instead a wait and see attitude. It was with this study that it was found that at an early stage cancer causing genes can be switched off and protective genes switched on, just by changes in diet and lifestyle. Within months this actually inhibited the growth of tumours.
That is about all for today.
Best wishes.
Sylvia
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Hi everyone
I haven't watched this yet but it looks good. It is about future direction in breast cancer
http://www.onclive.com/peer-exchange/breast-cance...
Michael
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Hello Michael,
Thank you for posting the link. I shall look at it later on today as I think it is something important that everyone should have a look at. With cancer treatment in general having a poor record in this country, I think we all need to keep a watch on what is going on and make sure we all get the best and most up to date treatment.
I am busy at the moment going through a slow and careful read of the 2014 book Beat Cancer by the two professors I mentioned previously.
I am interested in the information about chemotherapy and stem cells and this science of epigenetics. It is in Step One of the book and is quite challenging. I am finding Step Two easier to read. It is entitled Find Your Balance and is all about, as I understand it, getting your body in a state of homeostasis, balance, and what can happen when it is out of balance. I was particularly interested in what stress does to a person's body and how it can put everything out of sync and you can over time be on the road to cancer.
I have also received my latest e-mail from Chris Woollams entitled And Now For Something Completely Different. I have been going through it. It is six pages long. I read through it and put marks against the headings underlined which I later click on to get further information and then print it all out because I do not like sitting at the computer for that long. The result is 42 pages!! There is a lot of information.
The weather here has changed dramatically today. The winds are very strong and I have had to close all the windows. Rain is forecast and we really need it. I am having a day indoors today after a lot of gardening, about seven hours in the grounds of our apartment complex yesterday.
Wishing you all the very best and thanking you for your contribution to our thread.
Best wishes.
Sylvia
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Hi, Sylvia and all,
I have a question: Did anyone have the side effect of runny, watery eyes from doing the Taxotere? My eyes have been watering since last week and it says on breastcancer.org chemotherapy site that vision problems are one of the more uncommon, serious SE of Taxotere. It is listed with heart problems and bone loss. Eek!
It is like a bad allergy but I am 61 and have never had allergy like this.
Hope all are well,
Mary
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Hello Mary
It was nice to hear from you.
I was sorry to read that you are suffering from runny, watery eyes.
It is not something that I experienced but then we all know we react differently. I do not remember reading in any of the books that I have read over the past years about Taxotere and eye problems, but I am sure that if anyone else has experienced this then they will post in and let us know.
What has affected me the most from Taxotere is long term problems with the feet, especially the soles of the feet. As I have said in other posts, I have peripheral neuropathy for which I have been told there is no cure and my oncologist definitely told me it was due to the Taxotere.
If problems with eyes is mentioned on the breastcancer.org forum I would think it means that it has come from women suffering from it.
As with anything happening to a patient during chemotherapy, it is prudent to mention it to your oncologist and seek advice from him/her.
I do hope everything is not too bad with you and that you are managing to cope.
Fond thoughts.
Sylvia xxxx
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Hello Mary, again,
I have just been looking up the possible side effects of Taxotere on Cancer Research UK and saw that watery eyes is listed as a common side effect of this drug. The link is:
http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/docetaxel
I also saw problems with eyes listed under uncommon side effects. It is worth having a look at this link. I am sure if you mention to your oncologist she will be able to give you something to help.
Reading this link I was surprised to find that Taxotere is no longer made from the yew tree, as it seemed to be originally. Apparently it is now man made. This is strange because you can still read about the taxanes and how paclitaxel (Taxol) is used in North America because of the yew tree native there, and docetaxel (Taxotere) is used in Europe because of the different yew tree native to there.
I am not quite sure what difference this makes if the drug is now man made.
We have had a lot of well needed rain here in Devon today and the temperature is much cooler. I find I have more energy in cooler temperatures.
Thinking of you.
Sylvia xxxx
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hi Sylvia
Sorry I've been quiet lately but I've just caught up on all the posts since I was last on and see the two marys are doing ok on chemo, your brothers is well again, there's a new baby, adagios arm is finally healing and you had your nine year anniversary....so congrats to everyone
Since I came back from turkey I've had my birthday, been to the Lake District for a week, been doing my uncles garden, going the gym three times a week and I've gone back to work
I had my first appt with my breast surgeon yesterday and was not concerned when I arrived as I've been feeling pretty good still a bit fatigued but getting stronger, I was examined by my surgeons understudy who asked me a few routine questions about how I was feeling and then examined me and seemed concerned, she then said she was just going to get the breast surgeon to examine me who came in about ten minutes later and also examined me, she then tells me she's found two lumps one under my arm and one in my bad boob, I asked what she thought it felt like and all she would say was that "she was concerned"
She runs the evening clinic on a Wednesday and said she was going to take me up for tests, I was panic stricken by this point anyway within the hour I'd had a mammogram an ultrasound and a needle biopsy all in the same rooms I was first diagnosed almost a year ago I was rushed through because she didn't want me going home without results....there a great team in the Linda macartney centre
After waiting an hour for the results I was called in and the results were inconclusive as there was a lot of blood in the sample and wasn't clear, so now I have to go back in three weeks after the bruising has subsided for a second needle biopsy and possible core biopsy, I can't believe I'm back here waiting for results, my mind has been going to some very dark places and I've been convincing myself it's back
On the plus side my Neice is doing well, the bone marrow/stem cell transplant seems to have worked and she's due a scan soon, I'll let you know when when that is and how it goes
Remember me telling you about lulu the TN girl from my group whose cancer had spread to her brain, she wasn't doing to good and they have decided to operate today and were waiting for news from her sister now, I'm praying it went well
I went back to work Monday this week on a phased return on light duties and they have been really good with me, Ive hardly had anything to do but I'm back on full pay which is good as they stopped my pay 6 weeks ago as I'd used all my sick leave up so at least I got money coming in again
Take care
Gill
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jackpot - so, so sorry to hear of your lumps. I can only imagine how that would make your heart sink and bring back all the previous memories. I just don't know if I could cope with that!!! Please know that you will be in my thoughts and prayers as you wait for the next step in this unexpected process. Hopefully everything will be fine - try to keep busy to keep your mind off it - easier said than done, I know. Take care and keep us posted. Glad your niece is doing OK. And it is good that you are back at work - do you find it tiring?
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mary - i had the issue and its actually the chemo coming out of your tear duct, that crap goes everywhere
i used natural eye drops and found it provided relief. 0 -
Hello Jackpot (Gill)
I was so pleased to find your post just now and to have you back on the thread. I have been thinking about you a lot and hoping that all was fine with you.
I was so sorry to read all that has been happening to you and I do hope everything will be alright.
I can imagine what a shock it must have been to go for your first check up after finishing treatment and be told by your consultant surgeon's registrar or medical assistant that there is a lump under your arm and one in the bad breast. It must have been awful to be going through all that examination again with a mammogram, ultrasound and needle biopsy. After waiting for the results it must have been awful to be told there was too much blood and that the results were inconclusive. You are now in that situation that we all find so wearing, namely the waiting game. Three weeks is a long time to wait in a state of uncertainty. All you can do is to try to keep busy so that time will go quickly and the bruising will heal.
I shall be thinking of you and just hoping that you will have good news and that there is another explanation for the lumps.
I remember how I felt when I went for one of my regular check ups with the medical assistant to my breast cancer surgeon a couple of years ago and she said she thought there might be something not right with my good left breast. That was on a Friday and I had to wait until Monday to go for a mammogram. I felt really awful. I had the mammogram and an ultrasound and was told all was OK. The sense of relief is unbelievable.
I can imagine how your mind has been going to dark places but hang in there and try to hope for good news. If it is bad news remember that you can be treated and that you can do this and we shall be here for you.
I am thrilled to know that your niece is doing well and I hope she continues to make progress.
Fond thoughts.
Sylvia xxxx
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Hello Gill again,
I am doing this post in two parts because I do not think you can save as you compose on the forum and I was afraid of losing the post if it got too long.
I certainly remember Lulu and I know she has been through a tough time. I do hope she will be alright. Please let us know what happens.
I have missed you on the thread these past weeks and was wondering how you were getting on. I was glad to know that all had been going well for you since you came back from your holiday in Turkey until you went for your check up. I was glad to know that you had had your birthday and that you had been on holiday to the Lake District. It must have been good to get back to work and to have a normal routine. How have you been feeling back at work? I do hope it has not been too stressful. Make sure you take care of yourself during the next three weeks while you are waiting for your appointment.
I was glad to know that you have caught up with all the posts. As you say, the two Marys are getting through chemo and Marymargaret has little Evie and we all hope it will not be long before Evie is back home. Adagio gave us the good news that she is a lot better now after the fall she had. Chatterbox (Michael) has been providing good links for information. Linali went off on holiday to Turkey and Susaninicking is probably in France or on holiday somewhere else. Normandee (Norma) continues to post even though she is very busy getting towards the end of the school term and looking after her elderly mother.
I am concerned that we have not heard from Carolben in South Africa and just hope she is still stable.
Apandy (Anne) has not posted in a while and I just hope she is busy with school work and will pop in one of these days.
Wishing you all the very best and keeping my fingers crossed for you.
Fond thoughts.
Sylvia xxxx
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Hello jenjenl
Thank you for popping in to give that information to Maryna8. It is always useful to know that someone else has experienced what you are experiencing. I did not know that the chemotherapy drugs could come through your tear ducts. It makes sense to relieve the eyes with some kind of drops.
Wishing you all the very best.
Sylvia xxxx
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Dang it Gill. I think all will be ok but this stuff does stomp on your last nerve. Hang in there and breathe. I have a couple of huge lumps also in the bad boob and they look frightening on a mammogram, about a zillion times worse than the original tumors.....they think they are just hematomas. The checks and rechecks and all it involves is just so hard. Keep us posted.
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Dear Gill
Just read the posts and so sorry to learn of your worry at the moment. All sorts of things apparently can cause bumps and lumps - and I have heard of scar tissue causing nodules. Naturally you are concerned like any of us would be after all we've been through but there is every chance it is innocent. Many thoughts and hugs to you and hoping you get results quickly which will give you peace of mind.
Love Norma x
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thanx ladies
It helps to talk it through with girls who understand, I told work and their like "you'll be fine, don't worry" but how can you not worry, men just don't understand do they, I don't want to tell the boys anything just yet as I don't want to worry them needlessly if it turns out to be nothing
Just got my appt through the post today it's the 21st July for second biopsy so at least I know now also I get the results on the day so there's no waiting
Works been fine this week, I'm on light duties and not doing much at all I go in at 6.45am and I'm home by 10.am
Sylvia just to let you know Lulu come through brain surgery ok and was awake and eating a curry last night when her sister visited so that's good news
Susan it's good to know the lumps could be hematomas or like Norma says scar tissue, it was just with the breast surgeon saying she was concerned with what she was feeling that has got me nervous, any way there's nothing I can do now but wait so I'll try not to worry to much about it
Take care
Gill
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jenjenl,
Thanks for letting me know you also had the watery eyes......weird to think it could be the chemo coming out. Maybe that's why they would be crusted with yellow gunk in the morning. I am guessing your symptoms went away, I will sure be glad when mine do too!
Best wishes, Mary
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Sylvia,
Thanks for the link concerning the watery eyes. I find it comforting if a symptom I have is listed in the "common" symptoms for some reason. It has been almost like a really bad allergy attack, and I don't usually have those. Very uncomfortable, if jenjenl is right then it has something to do with the chemo.
I have to go to the hospital and pick up my husband now, he has been there since Tuesday with breathing issues. We just can't seem to catch a break, I am getting pretty much worn down.
I will write more later, thanks to everyone for their support.
Mary
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Hi
I was sad to read of the death of a remarkable young woman with whom Janette was friendly. I think her story made me and quite possibly Janette a bit blaise when Janette relapsed. you can read her story here:
http://www.bbc.co.uk/news/uk-northern-ireland-2805...
Michael
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chatterbox - just read a bit about Noleen. She was a remarkable young woman with tremendous strength and determination - she will be sadly missed in the cancer community in N.I. Hopefully she didn't have to suffer too much near the end of her life. It just blows my mind that someone can get breast cancer at 22 years of age!!!
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