Calling all triple negative breast cancer patients in the UK
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Good evening Sylvia
I watched Long Live Britain today, whilst eating, roast, Yorkshire pudding and finishing with rhubarb crumble and without any sense of worry or guilt. But seriously it was a very interesting programme;it was a good job that it wasn't made in Ireland because the statistics would have been even more shocking.
Personally I think the most dangerous food stuffs, although I rarely hear it mentioned as being bad, are drinks like Pepsi or Coke. I think I mentioned before that I did a survey a couple of years ago and was shocked at the amount being consumed.
Michael0 -
Hello EmmaL,
Thank you for your post. Do not worry if you do not always have the time to post. We all have other things happening during the day and we can understand how busy you must be with a young child.
I know that it is difficult to put the memories of treatments behind you and that it takes time, but believe me as time goes on you will manage to put breast cancer into a little corner of your brain and get on with a normal life and have just a bit of anxiety as the date approaches for a regular check up. We all know we cannot take anything for granted and that one day we may be faced with recurrence, metastases (spread) or a new primary, but most of the time we can put it to the back of our minds. Concentrate on the fact that your treatment is behind you, get on with your life with your family and enjoy every day to the full. Concentrate on the here and now and do n ot worry about the future.
I do not know if a bone scan is part of standard treatment. I think I had it because on diagnosis, after blood tests, my oncologist and breast cancer consultant surgeon were concerned about elevated levels of calcium serum in the blood, which can be a sign that cancer has spread to the bones. It turned out that I had an over active parathyroid gland that was causing the problem. This was later cured through surgery. Apparently I had had the problem for a long time with no symptoms. Some research shows that there is a connection between an over active parathyroid gland and the development of breast cancer. In the UK testing the parathyroid hormone level in your blood is not part of routine blood tests, so it would not have been picked up. It is the parathyroid hormone level that gives the diagnosis of an over active parathyroid gland. It is not the calcium level that gives the diagnosis.
I am sure you are doing all you can to help yourself stay healthy. We need to eat a healthy balanced diet, keep active, physically and mentally, and above all avoid negative stress and try not to worry.
Yes, it is true we have had similar experiences in our cancer journey. We both had large tumours, a right breast mastectomy, more or less the same chemotherapy drugs except that I did not have fluorouracil. We both had radiotherapy. As for lymph nodes, I had seven removed but just one node, the sentinel node, was affected. Did you have a CT scan before and after treatment?
I am glad to know that you are following me step by step, especially if it helps. It is amazing how time passes by and that it will soon be eight years and two months since my diagnosis. Keep hanging on to the image of that discharged label or labels. I still have to see the oncologist but only once a year. It will probably feel very strange when I no longer have any hospital visits, providing all goes well for the next two years, and I shall probably have a feeling of being abandoned and on my own! I am already wondering what will happen about getting a new prosthesis when I am no longer with the hospital. This is something about which I need to ask.
Have you been given a copy of your pathology report? I was not given one at the end of my treatment in 2006, but I was told I had an excellent pathology report and that there was no visible sign of cancer cells. I have often thought since that I should ask for one, as everyone now seems to get one, but if there are negative things on there I may start to worry!
I can understand that you are in a very emotional state at the moment, but gradually this will pass. Hold on to all your plans and dreams as they will help you to keep strong and motivated. Remember the words of a song in South Pacific. “If we do not have a dream, how are we going to have a dream come true?”. You are a young mum with all your life to live.
We did have a young woman from Ireland posting on here, Mumtobe (Carol), who went through the same cancer treatments as us and did this while she was pregnant and actually had the baby (Baby Emma). She got through it all and mother and baby are still doing well. She posted some weeks ago to say she and family were on holiday in France. I hope she will be in touch some day soon. She had her highs and lows, but she got through.
Because of your young age, I was wondering whether you have been offered genetic testing. Would you be interested in having it?
I hope you have a good week and remember to have a good cry if you feel like it. It is better to let your emotions out than to bottle them up. Remember, we are all here to help you all we can.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Thank you for your post. I was so pleased to know that you had watched Long Live Britain and that you did it while enjoying a traditional roast dinner and a traditional dessert and had no sense of worry or guilt! A little of what you fancy does you good!
Are people overweight and in poor condition in Northern Ireland. Is there a lot of smoking and drinking?
I do agree with you that drinks like Pepsi or Coke and all sugary fizzy drinks are contributing to bad health and they seem to be very addictive. I am not surprised at the number of these drinks that are being consumed, along with all the junk food. There is just too much on sale and it seems to be getting worse. Analysing the aisles of a supermarket shows me that most aisles need to be avoided. Yesterday our supermarket was heaving. What with all the locals, all the people from the Sandy Bay Holiday camp, and all the people that come from the surrounding areas, it was hard to move around. They were buying up extraordinary amounts of food and drink. I avoid most aisles. I think supermarkets have contributed a lot to obesity, overweight and general ill health. There is too much food and people are eating and drinking too much. I wonder what would happen if we all got issued ration books as was the case for some years during and after world war 2. When food was rationed the nation's health improved.
What kind of week is in store for you?
Best wishes.
Sylvia.
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Hi Sylvia
The waiting round for appointments is the worst bit, but I am quite lucky to have the Linda McCartney centre on my doorstep, from diagnosis to surgery was less than a month,
And was treated really well.
I haven't had any scans yet though, I think I might ask about that on the 16th before I start chemo, they got no idea at this point whats going on in there, at best it would be a worry off my mind that it had not gone anywhere else.
I know my friend stayed in hospital a few years ago till her drains were out but they send you home now, like you said hey probably need the beds, to be honest I'd rather recover at home any way,
The shooting pains in my arm don't seem as bad today but the feelin of raw skin on the underside of my arm is as bad as ever, there's no swelling or anything so it's probably just normal I think, hope it goes with time though
I'm going to carry on with the vitamins right through chemo, the more I read the more convinced its the right thing to do, I know oncologists are the experts but do they really know about nutrition, the leaflets I've had so far don't fill me with confidence advising sugery foods to keep weight on, I've been on the cancer active website and found it interesting thanks for that, going to order the rainbow diet book, the books I've been reading so far are "natural strategies for cancer patients by Russell l blaylock" "surviving triple negative breast cancer by Patricia prijatel" and "anti cancer a new way of life by dr David servan-schreiber" and learned a lot from all of them though it is a lot of information to take in and some of it contradicting
I'm glad I've found someone else on b17 it's reinforced everything I've read, hearing it first hand instead of reading it on the internet, I know you can't say for certain it's them keeping it away or a combination of your whole lifestyle but I'm going to carry on taking them through treatment and beyond, I'm taking about 40 a day right now and go down to 20 after treatment,
I might look into seeing a nutritionist though to get more advice,
Thanks for they advice
Jackpot0 -
Hello Jackpot,
Thank you for your post. I definitely agree that waiting around for appointments is one of the worst things during this cancer journey, because you can build up high levels of fear and anxiety and that is not good. The only thing you can try to tell yourself is that whatever happens you will somehow face it and that your medical team will help you.
I was very interested to know that you have the Linda McCartney centre on your doorstep to help. I would be interested to know what the centre is all about. Is it a charitable organisation connected to your hospital? The hospital where I had all my treatment is the Royal Devon and Exeter Hospital (Wonford), and in the grounds they have the FORCE cancer centre which is a beautiful modern house where you can go for complementary therapy, counselling, information or just a chat and a cup of tea. There are qualified staff and volunteers and it is just a relaxing place to go to. You can have aroma therapy treatment, Indian head massage etc. or one to one counselling. It was there when I was first diagnosed that I met a really nice retired nurse, who befriended me and came to all my chemotherapy treatments along with my husband. We have remained friends. I think that complementary treatment and indeed alternative medicine does help with the cancer journey, but I think probably only the orthodox treatment can get us into remission.
It could be that you will have the scans after you finish chemotherapy. They will have some idea of what is going on by your stage and you are stage II which should mean that it has not spread to far regions of the body. If it had spread to other organs you would be stage IV. How many lymph nodes did you have removed and how many were positive?
I do hope the feeling of raw skin on the inside of your arm will disappear.
When it comes to vitamins etc. all we can do is make up our own mind and we do have to bear in mind that the information we have is that doctors etc. do not get much education in nutrition at medical school. I was told half a day! I listen only to myself when it comes to nutrition. I did find the consultation with the nutritionist in Bristol very interesting, even though I already knew much of what she said. I needed her to tell me that I needed to have the orthodox treatment which I was at first very reluctant to have. She told me she had patients who were not having treatment and of the problems with tumours fungating, becoming smelly and bursting through the skin. My breast cancer consultant surgeon also told me the same. I must say that at the RD&E I had excellent treatment and a really exceptional oncologist and breast cancer surgeon.
I am not surprised that you are not impressed with the leaflets on nutrition given out at the hospital. I agree with what Chris Woollams says about the nutritional advice on these leaflets. They are OK for those cancer patients who have cachexia, a kind of wasting and losing weight, but not for the majority of patients. During my treatment my weight stayed stable but I had lost some weight before this. A lot of women complain of putting on weight and say it is due to steroids. This puzzles me sometimes because I was given a few steroids to take home with me after each chemotherapy treatment but just for the first few days and they did not affect my weight. You are right about staying away from sugar.
I was glad to know that you had found the Cancer Active site interesting. If you follow a rainbow diet with your fruit and veg I am sure you cannot go wrong.
I was interested to know what books you are reading. Patricia Prijatel is a very good source of information about TNBC.
The book by Dr David Servan-Schreiber I read with great interest some time ago. You have to read them and take out the bits that you think will be good for you.
At the moment I am reading books by Patrick Holford and am reading the Optimum Nutrition Bible, which is most interesting. It is a thick book but you do not have to read it cover to cover. Of particular interest to me was chapter 32, Conquering Cancer, about which I shall post sometime soon. Another site you might find interesting is What Doctors Don't Tell You (WDDTY). I also buy the monthly magazine of the same title. I like to keep informed about everything!
I am also glad to have found someone else taking the bitter apricot kernels. I do not usually refer to them as B17 as I think there are supplements that go by the name.
That is all for this evening. It is a pleasure talking to you.
Fond thoughts.
Sylvia xxxx
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Hi Jackpot,
My Onc didn't want me to do anything different than what I had already been doing. Blueberries, in particular, is when he spoke right up and told me not to start eating them. Previously I had not been eating them. There are a lot of studies, and one article called, Blueberries may be triple threat for triple negative ... because it is supposed to be very good at prevent bc or prevent recurrent bc in TNBC. So maybe he felt especially strong not to do the blueberries at all, but he also said "no juicing, no supplements". I've also read of other women on here whose Oncs say that as well. My read on it is that they want the body to be in raw form, without aided assistance from outside influences, so that the chemo can find and destroy all cells. He mentioned that some supplements, etc may turn the signals off, and that he wanted to make sure all the signals were on, so that the chemo can do it's job. That's just my Onc's opinion, mind you. Listen to what your team tells you and go by what you also feel is acceptable or reasonable.
The day after my chemo treatments, I would go back for a Neulasta shot, which works by aiding the blood count so it doesn't drop so low, therefore being able to ward off infections. I stayed active during chemo, and was around the general public quite often, except during the two days during the cycle where I didn't feel good. Then the other days, I just operated as normal. Of course, if I heard someone cough or sneeze near me, I immediately avoided them.
I also had the Nurse run my chemo drip slowly. So my drips lasted about 2 1/2 hours each time, maybe a bit longer, because I had them go slowly. She ran it slowly the first time to get me used to it, and it worked so well, that at each visit I asked them to run it the same speed. I had no problems being there that long. My husband was with me, and frankly, it was one of the few times where we could be just with each other, without the phone ringing of people checking up on us, without him having to be at work, etc. We had a routine going. As soon as I got the infusion going, he would go downstairs to the cafe and find something yummy for him to eat for lunch, and he would bring me back a special request. I had my Diet Coke and Ice Chips going on ... and lots of magazines, phone to refer to, etc. I also did premedicate before going, because I don't like needles. I showed up happy with a leftover pill from my mastectomy surgery. Probably shouldn't announce that, but it worked really well for me, I'm a high strung Type A personality, so anything to help me not stress about a needle was a good thing.
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A few questions: I missed the discussion on B17. That's not a typo, meant to talk about B12, right? What is B17 and what is the data on it?
Also, what are bitter apricot kernels? Do the kernels get bought together, or do you have to eat an apricot to find them? What is the controversy with them?
Also, regarding the posting/follow-up regarding TNBC and scans/surveillance. The watch and wait, isn't protocol only for TNBC. The determination of what docs do depends largely on the doc's personal preference of protocol, and the assessment he has of his patients. Someone with a positive node might have a different type of surveillance, vs someone who didn't have any nodes affected. Or someone diagnosed with a larger tumor might have different surveillance than someone with a small tumor. The surveillance is usually determined by the assessment of the patient.
My medical team falls into the area of that they do not do additional scans/testing unless symptoms present or unless there is a rapid rise in the labs, or a consistent changing pattern in the labs in an abnormal pattern. I have had an x-ray done by my PCP because I requested it. It was not done on me in the beginning, but I wanted the reassurance that my lungs were clear, especially since my expanders were making it hard to breath for a period of time.
My schedule is this: u/s every 6 months, and MRI at alternating 6 months / BS twice a year and PS twice a year, alternating so that one of them sees me every 3 months / Onc visit quarterly, although he said he will switch me to twice a year in January, but I'm not letting him.
Quarterly visits consist of labs, (CMP and kidney/liver values). Twice a year he runs the tumor markers, but he does so only for me and my peace of mind. My Onc states the reason that scans are not done unless symptom is that medically they give treatment to improve symptoms. Like many others, I would think prognosis is better catching and treating something early, but he and many Oncs say that prognosis is the same. However, if something doesn't feel right, I race straight to one doctor or the other. And if one won't do what I need, I go to the other doctor who will do what I need. Sometimes it really does take the whole team to manage our health. When BS wouldn't tackle the scar tissue, and I was put on a wait and see u/s intervals for it, I went to the PS who removed the scar tissue for me. This was important to give me closure on the topic. When Onc didn't request an x-ray for me, I went to my PCP who also said just like my BS and Onc, that this was 'just my rib' but realized I needed to know for closure. I went to three doctors before I was able to get the x-ray.
I don't know if pap smear will be annually or every 3 years. What is everyone else doing with this?
Also, are all of you seeing the BS before the u/s in case he needs to highlight something for them to look at, or are you going to the u/s first and then back to the BS for the results? I've always seen the BS first, then u/s but this time, they are suggesting it the other way around. I don't think I will be going with that.
Hugs to all of you!
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PS - I TOTALLY agree with Sylvia on the sodas. I stopped drinking Diet Coke after my BMX surgery, with the exception on chemo day I would have my 1 Diet Coke. After that, I was really scared of it, and now I drink only organic green tea and spring water. I also stopped coffee immediately as well. I had only been drinking coffee a couple of years before the bc, and coffee is on the list on "known carcinogens" for acrylamide and comes with a warning label if you buy it in California, under the disclosure of Prop 65. Acrylamide is a chemical reaction that happens during the cooking process, and with foods cooked above 340 degrees, with a lot of sugar and baked goods, roasted coffee beans, roasted nuts, etc. Also on the acrylamide list are: fries/potato chips/pretsels/baked goods, etc.
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Welcome, Jackpot, sorry you need to be here, but it's a good place to be, I've gotten so much help here. I think that Debra and Sylvia pretty much covered it all, and I don't have much to add. Just to agree with Debra that chemo was not as bad as I expected it to be, although it was not nice. Take all the anti nausea meds they give you, and ask for stronger ones if you're still nauseous. I was just so scared with the first chemo, not knowing what to expect, having the infusion, going home and then waiting for what was going to happen. Luckily my sister was with me for that time, and it was a huge help having her. I had 4 sessions last year, the first one was the easiest as far as nausea and feeling sick go. It also depends on what chemo they will want to give you. My onc first discussed the chemo options with me and told me the side effects of each one. Then at the first chemo session, my chemo nurse gave me a print out of the particular chemo chemicals I'd be getting, with all the possible side effects listed, and what to do about them. I also had a 24 hour telephone number for any problems I needed to ask them about. Everyone was really, really helpfull.
Meantime, one step at a time will do it. It's a scary journey, but you don't need to do it alone. This is a good place to let it all out and know we all understand what you're going through. Wish you courage and hope, Jackpot, you can do this!!
I had my last Taxol last week Tuesday - have a ct scan scheduled for the end of this month to see what's happening in my lungs. I'm feeling well, if bone weary! Have been very emotional and tearful this week, I think it's partly the fatigue from chemo and relief at it being over for a while, and also the feeling that well, chemo is over, but the disease is not. However, I don't want to dwell there today. I want to just move past this last chemo and start feeling stronger. I am walking more and still doing yoga.
Hope to be off to visit my son in Israel soon, mid September, I think, so looking forward to that!!
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Hello InspiredbyDolce (Debra),
Thank you for your posts. I think we each have to make up our own minds what we do when going through chemotherapy. Different oncologists will have different views and you can end up with a muddled mind. Here in the UK at my particular hospital I was just told not to eat raw salad foods or sea food because of the risk of infection. Nobody said anything about vitamins or blueberries. The essential thing is to try to eat a healthy diet and not to get run down.
As far as juicing is concerned, it is too concentrated.
I was not given anything like Neulasta back in 2005/6 but I never had any problems with low red or white blood cell counts. I took iron tablets and eat iron rich foods.
I also led a normal life but did keep away from crowded places as much as possible. I was going through chemotherapy from November to April so the flu bug was around.
There has been no discussion about B17. My information is that B17 is another vitamin and is also known as laetrile or amygdalin and there has over the years been discussion about it. You may want to look it up. One link is:
http://en.wikipedia.org/wiki/Amygdalin
Bitter apricot kernels are just that. They are kernels extracted from apricots and you can buy them in some Health Food stores in the UK. You need the bitter apricot kernels because of what they contain and not the sweet apricot kernels. I have a feeling you cannot buy them in the US. I think you can get them from alternative doctors here. They are supposed to be healthy and to kill cancer cells.
You have to remember, as regards treatment, that in the US you have insurance based medicine and in the UK we have socialised medicine, a national health system that is free at the point of treatment and paid for out of general taxation. The treatment is fairly standard for cancer patients.
Discovery of a lump, either by the patient, her GP or mammogram.
Diagnosis, fine needle aspiration, core biopsy, ultrasound.
Treatment, a mixture of surgery, chemotherapy, before or after surgery, radiotherapy and now, probably a sentinel node biopsy to ascertain what is happening with the nodes.
There may be scans before or after treatment, perhaps CT scans or bone nucleide scans, depending on what the oncologist thinks is necessary.
After this standard treatment you will start off with check ups every three months, alternating between the oncologist and the breast cancer consultant surgeon. After about two years this changes to every six months, again alternating between the two specialists. These physical check ups usually seem to end after five years and then you are discharged.
Mammograms while going through these check ups seem to be every two years.
If you want anything more than the NHS offers you will probably have to get it done privately. Some companies do offer private insurance and this will help you with private care.
We have to try to keep everything simple and straightforward for the newly diagnosed as they are in shock and afraid and need reassurance. It is best for them to take one part of the journey at a time, concentrate on that and get through it. The biggest chunk of the journey is the chemotherapy and with this you also need to break it up and deal with one session at a time. You need to prepare yourself for that session, get through the day, come home and deal with any side effects or simply not feeling up to par one day at a time.
Thank you for your contribution to the posts. I hope you are feeling well and getting on with your life.
Fond thoughts from across the Atlantic.
Sylvia xxxx
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Hello Jackpot,
I just wanted to add something about when you start chemotherapy. I did try to cover everything in my post to you, but thinking about things afterwards I remembered that I had not mentioned the possibility of an ice cap on your head during chemotherapy to help prevent hair loss. It is something you might want to discuss with your oncologist on August 16th at your post-op appointment. I cannot speak from personal experience of this because I did not have it. I did mention it to my oncologist but she said she was not in favour of it as she was afraid of infection. Bear in mind that this was back in 2005/6. I do know that some women do opt for ice caps. I have been told that it is unbearably cold and it brings on bad headaches. Perhaps someone will post in with personal experience.
Remember to sort out the business of what kind of ports to have if you want them. I was quite happy to have the cannula in the back of my hand for my chemotherapy infusion.
Thinking of you.
Sylvia xxxx
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Hello Carolben,
I was glad to find you back in action on our thread and giving very good information to Jackpot.
You must be feeling very relieved to have had that last Taxol (paclitaxel) behind you last Tuesday. Congratulations. You have got through this. Now you have the waiting for the scan scheduled for the end of the month to see what is happening in your lungs. Keep as busy as you can so that the days pass quickly.
I think we can all understand that you are feeling bone weary, but it is good that you are feeling well. I think we can all understand that you have been emotional and tearful this week. I think it is good to have a good cry or post and let off steam if you feel the need. The worst thing is to bottle everything up. Going through breast cancer treatment is a very emotional experience and I think that our medical teams sometimes forget the great psychological impact of dealing with this awful disease. We are here for you, you know that and we all admire your courage.
You have about three weeks until the scan and I know you will make good use of that to build yourself up and to get as strong as you can.
It is good to know you are walking more and still doing yoga. That can only help. Keep focussing on that trip to Israel in September to visit your son.
Talking about exercise, there was a fascinating programme on the television last night, Monitor Me, on BBC2. It was really interesting and all about how increasingly with the aid of smart phones and apps, we shall be able to monitor every aspect of our body. One particular part really caught my attention. It was about a young schoolgirl who has devised a programme whereby breast cancer cells can be identified with a 99% certainty on a computer. I did not realise how deciphering cancer cells with the method today is quite difficult. If you can get a chance to see it I am sure you will be interested in this programme. There were other items too, about doing your 10,000 steps a day.
Sending you best wishes.
Sylvia xxxx
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Hello Michael,
Did you see the programme Monitor Me?
I saw a snippet in the Daily Express yesterday entitled New Hope For Cancer Cure. It is about stem cell technology and how it could lead to quicker treatment for millions of Britons and reduce reliance on chemotherapy. It also said it would be more effective at stopping the disease from returning by re-programming cancer-fighting cells. Apparently it uses the body's own immune system and harnesses its power to attack the cancer cells. It is on page 4 of yesterday's Daily Express.
http://www.express.co.uk/search/New+Hope+For+Cancer+Cure?s=New+Hope+For+Cancer+Cure&date=7days
Best wishes.
Sylvia
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Hello Sylvia,
Thank you so very much for your kind words. I am not great at making myself understood, which is frustrating as I used to be reasonably articulate.
Anyway, as each tumour appeared, I had to travel to London and have it biopsied. Benign cysts so far but at one stage when at an appointment, the surgeon refused to even examine my newly discovered tumour unless I returned in two days!! It's not as if I live around the corner and London for me is becoming synonymous with hospitals.
Now I have another tumour, which I haven't bothered anyone about as I see little point in the exercise. I have yet another appointment on 2nd September as one of the consultants is on another holiday. My surgery is augmentation surgery, as I was left in a horrible mess by my first surgeon (being resusciated didn't help, as that was on my left...non cancerous side). I have been informed that in order to put things in any semblance as nature intended, my surgeries will be over a period of a year to 18 months. Not something I look forward to, but there are so many here, much worse off than I.
My husband was never good with illness and as soon as I developed a second tumour, he was off...not so much as a goodbye. Now he wants half of my savings and to be brutally honest, he would have been a lot better off, had they not resusciated me. I found my life insurance policy on his computer chair some weeks before he dropped the bombshell.
I have good friends, although not all in this country. My dear friend has re-scheduled her work with her boss so she can come to London with me. I do not know what I would have done without her.
Needless to say, I have found great comfort in even the smallest of kind words. That means a lot to me. I felt bad about not regularly visiting the forum but I tend to go to ground instead of whining on about myself. I hate to bring anyone down with me.
So many of us here have our own trials and tribulations that it is a great thing you are doing Sylvia, giving people a voice and a group of 'friends' who can ask/answer questions. Support is everything as we all know.
Thank you so much to everyone who has supported me; I cannot begin to describe how it has comforted me to even be in someone's thoughts for even the shortest while. Bless you.
Sam
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Hello Again,
I have just read the post from Sylvia, replying to Jackpot. I had the cold cap and it saved the majority of my hair, including my eyebrows and my eyelashes.
It is a cap that is attached by a hose to a machine...inside the cap there is a spiral of tubes that are filled with the liquid that is frozen. It can go as cold as -6 degrees, but in all honesty, after the first ten minutes it isn't that noticeable. It is all in the positioning of the cap. My first session, involved the cap be brought forward to cover half of my forehead and this was quite painful. After that, one nurse positioned it further back to cover my hairline and this proved to be the most comfortable of all. It really was worth it for me. Conditioner is applied to your head first of all, so that the cold tubes don't stick to your head...it is helpful to have a towel around your neck if you find it too cold at first.
I also had my chemotherapy through a canula in my left arm. This was my personal choice as I was informed that if I had the 'line' put in (straight into the heart's superior vena cava) then it would have to be flushed through at the local hospice! I found both options non-negotiable, but that is only my opinion.
I hope this helps; oh the cap was on about a half hour to 45 mins before chemotherapy and the same after the last dose.
Oddly enough, I eventually lost some pigmentation and my eyelashes still need to be tinted regularly. A small brown mole I had on my left wrist is now skin coloured, but that can happen.
All the very best and try to stay positive. You may hear me moaning about my circumstances lol but trust me I am normally a very positive person and found one step at a time to be best for me.
Sam
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Hi Sylvia
The Linda maccartney centre was the old nurses training building connected to the royal liverpool hospital but they were transferred to John mores uni,
The forget me not cancer appeal raised the money to turn it into a state of the art cancer centre mainly for breast cancer patients, everything is done there including chemo, before patients had to travel to clatterbridge which wasn't easy to get to,
I don't know if its fully charity funded but I know a lot of fundraising goes on locally for the centre,
I only live about a mile away which is lucky because the centre is used by people from all over the north west,
They have the look good feel better people in every week but I don't think they do aromatherapy or Indian head massage like yours does.....be nice though if they did,
I'm going to ask about a scan on Friday just to put my mind at rest I think and I'll find out my treatment plan then as well, I'm not sure yet about my lymph nodes, two biopsies during diagnosis both came back negative but they said they would remove the sentinel node to check in a machine for cancer while I was still in theatre and it came back positive so she said she removed all the first layer of lymph nodes so I was a bit gutted about that, she said they get sent off and ill find out Friday how many we're removed and if any others beside the sentinel one was malignant
I know what you mean about being reluctant to have chemo I'm the same, everything about it tells me it's wrong but it looks like its going to be a necessary evil but at least ill be armed with vitamins to get me through it,
My friend who as been through this put on two stone during treatment as did friends she met there, I asked my breast nurse what makes people put on weight during treatment, she basically said the laziness of being ill, I've got no intentions of sitting doing nothing through this being off work is already driving me mad with boredom but I'm going to line up a couple of photo jobs to keep me busy,
Have you read the rainbow diet book i haven't ordered it yet as it out of stock,
The anti cancer book by dr David servan- schreiber I never realised till half way through the book that he had infact lost his battle against cancer, but fought it for 20 years,
I'm reading three books and I'm never off the Internet right now so don't know if I'm trying to take in too much information too quick and end up remembering nothing ha,
Ill have a look at wddty site and thanks for all the information and advice,
Hi Debra
I still find it amazing that the body in the "raw form" as they put it too you is better than one that is nutritionally stronger, surely our raw form was lacking in something too have got this in the first place and anything were doing to improve that is good, it makes you wonder just how much they know about nutrition at all....how can they call them outside influences when it's just a natural food we should be eating anyway,
So you had to go for chemo one day and then go back the next for an injection?
Did that help with the side affects, was your chemo every three weeks and you only had two bad days during each treatment?
I might ask about running the drip slower if you think it will help, I've got no problem with how long it takes if it helps, I've also got bit of a thing for needles...ha ha...you think we'd all be used to them by now wouldn't you
I probably shouldn't have referred to the kernels as b17 but I've read a lot about them during the last couple of weeks and I'm convinced there one of the best things to be consuming right now, I've been getting mine from a local health food shop i was in there for other things and was told about them by the owner,
You mention your X-rays and scans were only done when you requested them for reassurance, did they arrange them with no problem or did you have on insist on them because thats pretty much what I'm going to ask for on Friday,
Hi carolben
Thanks for the welcome, I know what you mean about a good place to be, I've got so much advice already I would never have got, it's funny because I was following this thread for a while before joining and felt like I knew some of you already,
I'm a bit scared about the first chemo, just not knowing whats going to happen after it but I'm sure the second third etc will be much easier once i know what to expect, my friend and my sons are going to be going with me so ill be well looked after, did any of you drive home after chemo or did someone take you, just wondering if driving home straight after is a good idea,
I'm sure ill be on here often to complain about side affects to anyone who'll listen ha ha
At least you will all understand,
I'm glad you've finished your chemo for now and that your feeling well,
It's nice to have something to look forward too, how long are you going for?
I had a holiday booked to Cyprus in sept but I've had to cancel....never mind there's always next year.....
Take care
Jackpot xx0 -
Hi Sam
The cold cap thing is that something you can ask for when you go for your first treatment or do they have to know in advance?
Do many women opt for this?
Did you still get help for a wig just in case it didn't work?
I know it sounds vain but I'm more worried about losing my eyebrows and eyelashes
As there harder to disguise,
I will try to stay positive talking on here is helping....friends have been good but you always come away feeling that they don't quite understand even though they mean well
I was reading about your husband, men never cease to amaze me how they can be so heartless,
Mine travelled half way round the world last October to spend a week with a woman he met online....I've put my illness now down to the stress he put me through during that time, but I don't know if I'm right,
Now he's moved back in to look after me while I'm going through treatment ( separate rooms of course ) there's no going back,
But at the same time I'm grateful for the help he's giving me now
I felt so alone before I found this forum even talking to someone else who had breast cancer if they weren't triple neg I still went away thinking they still didn't understand ,
It's nice to know there are so many woman out there beating this disease,
Take care
Jackpot xx0 -
Jackpot - I lost weight while on chemo - so not everyone gains weight. I kept exercising every day during chemo - went to fitness classes twice a week, walked daily and pedalled on a stationary bike. I do think the exercise helped me feel less tired - in fact it energized me rather than drained me. Of course, I did have to rest plenty especially the first few days after each infusion. Take each day at a time - you will get through it better than you think. Which chemo drugs are you going to get?
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Hi adagio
That's good to hear you lost weight during chemo, my McMillan nurse did say people tend to get a bit lazy when there sick and that's why they put on weight....
Ive always been active and hopefully will continue too be, do you know if we can swim during chemo or is the infection risk too high?
I won't know till Friday when I go for my post op app with my surgeon anything else about my treatment, i havnt even met the onc to know what type of chemo or how often yet, my surgery was less than two weeks ago, so I think I'll find all that out then
Take care
Jackpot x0 -
Hello Sam_UK,
It was nice to hear from you again. please feel free to come and talk here as often as you like.
It is true that hospitals do not seem to have any idea about how wearing and tiring it is for their patients to make these journeys. It seems to be getting worse as everything is centralised. This is for the convenience of the staff and not the patients. It was so much better when we had small local hospitals. I know that although the RD&E in Exeter is a big hospital, some patients with heart problems etc. have to go to Plymouth. This puts them in a strange setting and makes it very difficult for family and friends to visit. It is sad that London for you is becoming synonymous with hospitals.
Please be vigilant about all these tumours that have appeared. We cannot be too careful. I do hope you will be able to get everything sorted out on September 2nd. That is still over two weeks away. Let us hope that everything will be made to look as normal as possible as the end result.
As for your departed husband, just forget him. In times of illness and trouble you soon find out the value of a person.
I am glad to know that at least you have good friends and someone to go to London with you. You do not want to do these things alone.
Thank you for your kind words about the thread. It is here to support and comfort people and there are some really good people on here.
Look after yourself.
Fond thoughts.
Sylvia xxxx
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Hello again Sam_UK
Thank you for your very interesting, informed and informative post about your experience with the cold cap during chemotherapy. This is just the kind of information that we need to help others make their own decisions about what to do. I am sure that everyone viewing this thread and facing chemotherapy will find this information of great help. Losing your hair from chemotherapy drugs is perhaps the most traumatic side effect of this treatment. I found the information so interesting. My hair started to fall out after the first session of chemotherapy with epirubicin and cyclophosphamide and then the eyelashes and eyebrows disappeared during the second half of the treatment with docetaxel (Taxotere). My toenails also went a bit brown with the docetaxel but did not fall off as some women have experienced.
I was interested to know you had a cannula for your chemotherapy treatment as I had the same. I was not offered any kind of port and would not have wanted it because of all the rigmarole with flushing out and infection risk.
Once again, thinking of you and wishing you well.
Sylvia xxxx
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Hello Jackpot,
Thank you for your post and the information about the Linda MacCartney centre. It was so sad the way Linda died of cancer so young. I often wonder whether she had triple negative receptor status breast cancer as we are told it affects younger women more than older ones. I do not think we have ever had any details other than that she died of breast cancer.
As Force they also do the look good feel better thing but I did not participate in any of this. I just wore my lovely wig and the fringe covered my eyebrows, so I felt fine.
This meeting on August 16th is very important for you and you need to come out of that meeting with all your required information.
I had just one lymph node, the sentinel node, show up positive but seven were removed during my mastectomy and all the others were in the clear. I should think you would be given your pathology report with all the details. It would be useful if you posted the details so that we know exactly what is being looked at in the UK these days. Some triple negative breast cancers are also known as basal-like, a kind of sub-group.
Chemotherapy is a necessary evil but it is drastic treatment. All of the breast cancer treatment is drastic but it is all we have at the moment to keep us alive. Removing breasts, or parts of breasts, is drastic. Filling the body with toxic drugs is drastic, as is treating the body with radiation, but it is all better than the alternative. We need newer and less drastic treatment, but above all we need prevention.
I do not believe that it is the laziness of being ill that makes women put on weight. I think it is the steroid treatment. We must remember that a lot of women carry on working during their treatment and that I would think most women carry on more or less as normal. They certainly do not go to bed for the eighteen months of standard treatment. If they follow the fatty sugary NHS diet I would think they would put on weight!! I think it is a good idea that you line up a couple of photo jobs to keep you busy.
I have not read the Rainbow Diet book as I was already eating a rainbow diet before I got ill. I would think anything by Chris Woollams is well worth reading. I am not surprised it is out of stock. I have read the anti cancer book by Dr David Sevan-Schreiber and found it most interesting. He did die in the end but managed to survive for twenty years. When I was first diagnosed in June 2005 I went straight out and bought a book entitled the Cancer Directory by Dr Rosie Daniels and I read it from cover to cover before my first consultation with the breast cancer consultant about treatment. The book was published in 2005 and was so useful. Having read it I sent off a load of questions to the consultant so that she had the answers ready at my appointment. In 2005 they were not giving out much information except to say the kind of cancer, for me invasive ductal carcinoma (IDC) and that it was not hormonal and therefore the prognosis was not good because after standard treatment Tamoxifen was of no use. My consultant was surprised at all my questions and told me that most patients did not want to know anything. She said she was impressed at my scientific approach to everything. Things have moved on since then but I still wonder how many patients in the UK are asking questions. What are the three books you are reading now?
I find books on cancer to be easier to understand than some of the information on the internet, which can be too technical and complicated, full of jargon, especially research papers.
The book by Professor Jane Plant, Your Life in Your Hands, is interesting.
I do agree with what you said about having a body that is nutritionally strong.
My consultant breast surgeon told me that I should not have had breast cancer, but that ironically sometimes you can be too healthy and your immune system gets lazy and does not fight the cancer cells we have circulating in our body all the time and that it usually sees off. I have never been ill before the diagnosis of breast cancer except for measles and mumps as a child. I still think my breast cancer was caused by stress and my undiagnosed over-active parathyroid gland.
I was interested to know that you can buy your bitter apricot kernels at your local health food shop and that the owner actually told you about them. I cannot buy them locally any more. Are you buying them in plastic packages like we buy nuts etc. in our health food stores and is it an independent health food store? I was buying them like that and then they disappeared. I then found tins of them in another independent health food store but they have now vanished, but I am ordering the same tins online, they are Creative Nature apricot kernels, Himalayan, 300g. I actually love the bitter taste they have and usually have them with a mug of Clipper decaffeinated green tea. I usually eat five at a time throughout the day, and at present am eating twenty. I would be interested to know what else you are including in your nutrition to keep healthy.
When I was going through treatment I also used to drink mistletoe herbal tea but that has vanished. I also took pycnogenol supplements made from French pine bark, which is said to be a powerful immune booster. They use it or used to use it, to treat breast cancer at the Penny Brohn cancer centre in Bristol. You might find it interesting to look this up on the internet.
That is all for now.
Fond thoughts.
Sylvia xxxx
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I just wanted to throw my 2 cents worth in on the issue of a port or not. I was not given the choice not to have a port...my only choices were arm or upper chest and arm was discouraged. I have never fully embraced my port because it is a big lump that freaks me out kind of, but thank God for my port! So so easy. Saved arms. I was in the hospital once during chemo with an infection so a needle went in once, stayed in for 4 days and I could almost sleep through the 4a.m. hanging of my antibiotic.....I would roll over, hand the nurse the tubing and be out again before she left the room. Sleeping was totally comfortable. Free arms during chemo is a fabby thing. I get flushed out with a small amount of heparin (I think) when the doctor puts the needle in before chemo and then they do the same flush after chemo. Nothing to it. I had a contest to name my port on Facebook since I was not bonding with it too well. His name is Little Lord Portleroy! I do not love him and the lump is disgusting but I am SO glad I have him.
I just saw a new a wonderful gynecologist today because I'm switching from my former doctor due to too much trying to make me feel good about my BC while not being too realistic about the realities of my BC. I came skipping out of the new doctor's office. Clearly this doctor grasps the seriousness of TNBC but also told me that she feels strongly that I'll make it and survive this. Words that make your day!
Hang in there everyone.0 -
Hello susaninicking
Thank you for your post. I shall answer tomorrow.
Bye for now.
Sylvia xxxx
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Hello again,
The cold cap is something that you have to request and usually from the oncologist. Have this set up before you go for your first session. Have confidence and think positively...I don't know if it made a difference but I left the conditioner on my head for the rest of the day. I was later advised not to go frantically scrubbing at my hair and it thankly worked for me.
Hope this helps
Sam
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Hi everyone,
The extra details in my post were provided because somebody asked what our surveillance was a few pages back ... and that they felt concerned and were going to ask for a scan or something now that they were done with treatment.
I would like to agree with Sylvia, that to focus on one core thing at a time. My Onc only wanted me to focus on chemo. He didn't want to discuss the future or the past, just the chemo. I also was not at all an active member of the boards. I knew nothing going in, and perhaps being naive helped me tackle things without knowledge that something could be different or not go as planned. I only went on the knowledge of what my medical team told me.
If you can believe this, I didn't even know what chemo I was on until I googled it, while looking up at the drig bag. My Onc just worked his specialty, and came up with what he felt I needed.
I do like Carolben's anecdote of how she didn't know what to expect and kind of just 'waited' to see what happened. I remember that feeling too. I kept thinking when will I feel nauseated? I never did, but I made sure to eat quite a bit during chemo. So much, that I did gain 10 pounds, which flew off the moment chemo ended.
However, knowledge truly is power, but only go as far as you need to. You don't have to cross every bridge right now. You'll likely have moments in your journey where you will have opportunities to investigate things further and assess options for your medical needs.
Best wishes to all of you - hope everyone is having a great start to the week.
PS - Carolben, congrats to you on the final chemo. I know your scan will look great for you!
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Hi Sylvia
I haven't seen much TV this week as I am in London, I will hopefully catch up when I get home.
You were asking about obesity and drinking in Ireland. Basically it blows any guidelines out of the water. At Belfast International airport there is a poster at the entrance to one of the bars that say's " Ulster Fry (like full English breakfast) and a pint £8.00. That says it all I think.
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Hello susaninicking,
Thank you for an interesting post and one that will be useful for those just starting chemotherapy. It will help them with yet another decision they should be making before chemotherapy and that is about ports, what kind of port or whether to just have a cannula. I was interested to know that you were not given the choice not to have one as ports were never mentioned to me in 2005/6 when I was going through chemotherapy. I had no problem with just a cannula but I do remember that towards the end of my chemotherapy treatment it was getting difficult for the district nurse who came to my home the day before chemotherapy treatment to take blood, to find a vein.
The strange thing is that after I had finished my chemotherapy treatment and was waiting for surgery for a mastectomy, my oncologist asked me what I thought about having a vascular port inserted on left side at the same time as I was having a mastectomy to my right breast. She said she was suggesting this because she thought I might need some more chemotherapy after surgery and that it would be easier with a vascular port. Initially I said no, but then decided to go along with this. Consequently when I had the mastectomy about three weeks later my consultant breast surgeon did the mastectomy and another surgeon whom I met at my pre-op assessment inserted the vascular port, or, as it is sometimes called, portacath. The day after surgery I felt no pain from the mastectomy but there was pain from my left side. My breast cancer consultant did her rounds that day and asked me to evaluate my pain from the mastectomy and I said there was no pain but I was concerned about pain on the left. She had a look and was surprised to find that a needle had been inserted on the left into the vascular port and said that was probably the reason for the pain. She made arrangements for someone to come and remove the needle and then all was OK. The surgeon who installed assumed that I was going to have chemotherapy straight away and had left the needle in. That was not to be the end of the story.
When I consented to have it installed I was told that it could stay in for life and that I was not to worry if it never got used. After it was installed I was told that I would have to have it flushed out every three months in the oncology ward where I had had my chemotherapy treatment, and that it would be flushed out using the blood thinner Heparin. I was not happy about this as I wanted to put the six months of going for chemotherapy behind me. I went for the first flushing out and all was OK, except that I felt very strange being back in that ward. The second time I went it was a different story. The nurse could not get the port to flush. I was then sent for an x-ray and was told that the port had kinked and that this was very rare but it would have to be removed under general anaesthetic. You can imaging that I was not very happy and I said I did not want another one installed!!! Not long before Christmas in 2006 I found myself in the hospital for day surgery to remove it.
During the time that I had the vascular port in I cannot say that I was very happy with it. I was very aware that it was there and you could feel it very distinctly as though it was a lump. I was glad to be rid of it!
I was glad to know you have had a better experience with your vascular port. Remember mine was never used so I cannot say how I might have felt with it when I had my chemotherapy. If I ever have to have chemotherapy again I shall stick with the cannula.
I think the name for your port is very apt.
I would not like others to be put off by my own experience but if you are offered a vascular port, please make sure everything is explained to you fully.
The other kind of port that you may be offered is, I believe, called a Hickman line. Whatever you go for to enable your chemotherapy drugs to be administered, make sure you are fully informed.
I am sure we are all glad that you are happy with your new gynaecologist. It is very important for us to be happy with our medical teams. At the RD&E, where I have my treatment, I had an all-women team and they were truly exceptional, the oncologist, the breast cancer surgeon, and the breast care nurse.
Have you now finished chemotherapy? It seems sometime ago that you said you had eight weeks to go. Let us know when you finish.
To anyone viewing please feel free to post about your own experiences with ports. It is so important to get out as much information and experiences as possible. Chemotherapy is a big chunk of treatment and there is a lot to be settled before you begin and can go ahead with peace of mind.
Thank you for your contribution to the thread.
Sending fond thoughts from the UK to Germany. How is life there at the moment?
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
I was very interested in all you had to say in your post and definitely think we are both helping by telling people to focus on one thing at a time. This is especially important with chemotherapy because it is a long journey and one which some find very difficult. Your oncologist was definitely right about focussing on the chemotherapy and forgetting about everything else.
Like you, I was not an active member of bc.org when I was diagnosed. In fact I was not even a member and did not know about bc.org. I was not looking very much on the internet either. I got my information from books which I started reading avidly on diagnosis. There were not that many books either, but I got a lot of information from the books I found, but there was no mention of TNBC at the time. I discovered bc.org in 2009 long after I had finished all my breast cancer treatment and was facing surgery to cure my over active parathyroid gland, diagnosed with the breast cancer in 2005, but left until I had recovered from my breast cancer journey. I discovered sam52 on the High calcium thread and we started a journey together as we posted about what was going on with us. sam52 had breast cancer in 2001, not TNBC but we have remained in touch since 2009 and she has been and continues to be an important contributor to this thread I started in September 2010 because I felt that TNBC, especially in the UK, needed to be brought to the forefront, as very little seemed to be said or known about it.
Debra, you have said some very wise words in your post and I agree with them. Knowledge is power but we do not want to overdo it. We can have too much knowledge and get very muddled. Carefully and slowly does it.
Thank you for your great contribution to our thread.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
I was just looking at clippings of Linda mc and it doesn't say anything other than her cancer was aggressive and that it had already spread when diagnosed, she led such a healthy lifestyle it makes you wonder how some woman get this disease when there so healthy and others...people I know personally live the most unhealthy life and never seem to get as much as a cold...you said you were following the rainbow diet when you were diagnosed....
How come you didn't participate in the look good feel better thing I believe they are really good fun, I think I will ive never really been one for make up so I think I could do with a little help with drawing the eyebrows back on....
I'm looking forward to getting the dressings off tomorrow they really feel uncomfortable now, what questions did you have ready when it come to discussing chemo, I keep trying to think of questions but I'm to sure what to ask.....
I'm not sure how many lymph nodes i had removed, my surgeon said she removed all the first layer after the sentinel node came back positive....though not sure how many that would be, hopefully all the others were clear though,
I will ask for a copy of my pathology report and try and make sense of it and post as many details as possible and no doubt need a little help understanding half of it....all this is still very new to me....
I've just been reading on a couple of sites including the cancer active one you put me onto that cancer could be a candida type fungus caused by a parasite and recommend using wormwood, black walnut hull and clove to rid your body of this parasite have you ever read about this and what's your opinion on it....
I did think it was a strange thing for my McMillan nurse to say about woman get lazy through treatment but maybe some do.....but I would think the majority don't...maybe they did follow nhs diet instructions of chocolate bars during chemo and other high fat snacks, all I can do is what I think is best for my own body,
It was interesting to hear what your surgeon said about your immune system getting lazy because you were too healthy and not fighting the cancer cells, do you think that could be true....I do think stress definitely has something to do with it though.....I had a really stressful 16 months previous to diagnosis....I lost my mum....a 29 year relationship ended.....among other things,
The health food shop were i get my kernels is about half a mile away and I didn't know existed till a few weeks ago....I parked in the wrong street to go the pet shop and had to pass it, so went in....they use them regularly themselves as prevention and swear by them...they are the creative nature Himalayan ones that your using they said there the best ones, but unlike you I don't like the taste I grind them down sometimes and add them too a smoothie but sometimes I just eat them and have a drink ready, I'm on about 40 a day now and i think I'll stick to that for now and lower it after treatment finishes.....I'm also using multi vit...multi mineral....milk thistle....curcumin....vit d3...omega 3....and green tea extract also I've just ordered garlic supplements but haven't got them yet are there any others you've used that are better.... oh and maitake mushroom extract 6 a day of them nearly forgot them....ha
Take care
Jackpot0
