Calling all triple negative breast cancer patients in the UK
Comments
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Hello Michael,
It was nice to hear from you. I do hope you are having an enjoyable time. I remember your saying you had a sister-in-law there so I hope you are having relaxing days.
I did have a good laugh about Ulster Fry and a pint £8. Here it is more common to have a curry and a pint these days.
I shall post a bit later as I have some more things to tell you.
Best wishes.
Sylvia
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Hello again Michael,
Sorry that I had to end my post abruptly, but someone was buzzing my apartment.
I wanted to tell you that I watched the 10 pm news on BBC1 last night and there was a feature about a breakthrough (yet another one!) with cancer and what genes were being damaged and what part of the gene. The work is being carried out by the Sanger Institute. I have not had time today to look into all this, but I was wondering what you might know about it.
Hoping to hear from you when you return. We now have a family member in Belfast. His company closed down in Essex and some staff were given the opportunity to relocate to Belfast or Edinburgh. He chose Belfast and is there for a month training people. He hopes to stay there and has said he really likes Northern Ireland.
Best wishes.
Sylvia.
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Hello Jackpot,
With Linda I suppose she might have had the triple negative receptors but if it was aggressive it could also have been HER2+. I was told when diagnosed that I was lucky to be HER2- as HER2+ was really aggressive and at that time women who were HER2+ were fighting in court to get Herceptin.
Breast cancer is more difficult to treat when it has spread.
There seems to be no rhyme or reason about who gets breast cancer. It seems to be the luck of the draw. There are risk factors but those risk factors, so I was told, do not necessarily cause your cancer. These risk factors include having your periods at a very early age, having a late menopause, not having had any children, having your first child late, having a close family member with breast cancer, such as a mother or sister, or probably father or brother. There is debate about stress and the birth control pill, but I think they are both a possible cause. We all know the risk of taking HRT. When I was diagnosed genes being silenced or mutating were mentioned, not to mention a lazy immune system. Being overweight is another mentioned risk factor, but I and my friends with breast cancer are all slim! Of course there are all the chemicals as well that we have in our lives.
I am not the type of person to take part in group things. I looked fine during treatment and did not feel the need. I had one counselling session at FORCE and that was all I needed. My husband and I did join a group about moving on after breast cancer, but one session was enough for us to know it was not our scene. We found it too gimmicky. I left my face without eyebrows or lashes. They have grown back but are not quite as thick as they were. As for the lashes, I find they are too fine and delicate for mascara. I do not wear any make up except for a little foundation. If you want to pencil in eyebrows I am sure the look good feel better will be able yo help.
I am sure you will be relieved to get the dressings off.
As for chemotherapy, because I was very reluctant to have the treatment, the oncologist arranged for me to have a special meeting with her after her clinic. I just asked her about the drugs that she would choose for me. She told me I would have three months of a combination of cyclophosphomide (Cytoxan) and epirubicin (Ellence) and that for the following three months I would have docetaxel (Taxotere).
Since I knew docetaxel belonged to the group of drugs known as taxanes and that the other drug is paclitaxel, I asked here why she had chosen docetaxel. She told me it was because it was less harsh on the heart than paclitaxel. The most important question is to know what drugs you will be given and what regime, every three weeks, every two weeks or weekly? You can ask what the likely side effects are and what you can do to prevent them or alleviate them. You can ask about what is available if your white blood cells or red blood cells get too low. You can also ask about how the chemotherapy will be delivered, ports or cannulas.
I think that would be enough to keep you going.
I do hope you get a copy of the pathology report. I was not offered one in 2005/6.
It is strange that you should ask about candida and breast cancer. When I was first diagnosed, and did not know about Cancer Active, I picked up a copy at the hospital of a magazine called icon and found it really informative. I later discovered it was a magazine produced by Cancer Active and issued periodically. I then subscribed to it by giving a donation. Then I stopped it but started the subscription again last year. There has been only one this year but it was very informative. I think there is a way of reading them online.
It was through icon that I found the name of a well known herbalist, Gerald Green, and I wrote to him, because I had already decided to delay orthodox treatment, and asked Gerald Green for advice. He sent me a booklet with nutrition advice etc. and his theory about cancer being connected to candida. He prescribed wormwood, which I took for some months and also prescribed astragalus (a potent immune booster). I took this and followed his nutrition advice of nothing with sugar and really a low carb diet. I think doing that helped to keep the cancer at bay somewhat. Having consulted the nutritionist whose name I also got from icon, and having consulted a homoeopathic breast consultant to whom I was referred by my breast cancer consultant at the hospital, I weighed everything up and decided that only orthodox treatment could get me into remission. Having delayed three months (which I do not recommend anyone to do) I decided to have the treatment and had chemotherapy, surgery and radiotherapy. I took homoeopathic medicine prescribed by the homoeopathic consultant at each stage of my treatment and I think it must have helped as chemotherapy was not that traumatic for me.
I do not know anything about black walnut hull and cloves to rid the body of this parasite. Please enlighten me.
I do believe that immune systems becoming lazy makes sense, but I also really believe in stress as a possible cause. Stress causes you to have too much of the hormone cortisol in your body and there is no knowing what it does to all parts of your body. I had a lot of stressful events in my life.
I was interested to know how you came to know about bitter apricot kernels. Make sure you distribute them throughout the day. Were the people in the shop Asians by any chance? You were lucky to come across them. I am also taking multivitamins and minerals in one supplement, vitamin D3 in soft gel capsules by Solgar, omega-3s and curcumin in powder form mixed in with hummus. I am not taking milk thistle. What are you taking it for? I have some garlic cloves in garlic stuffed olives and try to have some shitake mushrooms in an omelette from time to time. You seem to be doing all the right things.
I hope people will post to say what things they are taking and what they are doing in general to help themselves. We have had some useful posts about ports and ice caps, and it would be nice to hear from people about what chemotherapy drugs they are being given, there experience with side effects, tips for getting through, nutrition and alternative therapies.
Wishing you all the luck in the world for tomorrow.
Fond thoughts.
Sylvia xxxx
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All is just peachy here at the moment, thanks for asking. I am 15 days and 3 infusions away from finished assuming blood cooperates here at the end. My blood has its orders to stay strong! If you hear sobbing on the morning of the 30th don't be alarmed.....it is me weeping in joy at the end of this phase. I feel certain it will be one of the happiest days of my life. I have chemo in the morning. The Friday women are so fabulous that chemo is serious fun. People hate to leave when their infusion is over! So lucky to be enjoying the Friday Taxol experience. EC was no fun at all.
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Hello susaninicking
I was glad to know all is well at the moment and that you are just 15 days away from the end of your chemotherapy journey. I hope all continues to go well with the next two infusions and that the one you have just had went well.
I think we all know the great feeling it is when we finish chemotherapy. I can understand that you will miss the women with whom you went through chemotherapy. I am sure other women on the thread will be interested to know that you found paclitaxel (Taxol) easier than epirubicin (Ellence) and cyclophosphomide (Cytoxan). Keep up the good work.
Best wishes.
Sylvia. xxxx
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Hello everyone,
It is Saturday morning and we are supposed to be getting a lot of rain and cooler temperatures here in Exmouth. We really need the rain, but it often misses us.
To Jackpot, I do hope all went well yesterday at your appointment and that you have managed to get things sorted out in preparation for your chemotherapy.
To EmmaL, I hope all is going well and that you are gradually putting your cancer journey behind you.
To SamUK, I hope you have a good weekend. Try to keep busy while waiting for your appointment.
To PeggySull, we have not heard from you in a while, so just hope all is well.
To peterandliz, I have missed you on the thread and hope all is well and that you are just having some holiday breaks. How is Liz's friend?
To adagio, I hope all is well and think you are perhaps preparing for your holidays abroad.
To sam52, I hope you have managed to have a bit of a break. School is very much back in the air.
To linali, hope all is well with you and your family and hope to hear from you.
To chatterbox2012, Carolben, InspiredbyDolce ans susaninicking, thank you for all your effort on our thread this past week.
To Mumtobe, I would love to hear from you and know how you are.
Wishing everybody a good weekend.
Sylvia.
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Hi Sylvia
Well I got all my dressings off yesterday, was waiting for a miraculous relief that didn't come, still so painful...I think it's just lots of little nerve endings coming back to life as the actual scars are healing well,
I was trying to clean the sticky stuff from the dressings this morning and I felt a big lump under my armpit....someone reassure me that this is scar tissue or something from the op, did anyone else have this or should I get it looked at...it's also restricting the movement in my arm as its quite painful,
I got my pathology report (5 pages of it)....the good thing was 13 lymph nodes removed but only the sentinel node was positive so that's good news,
Tumour size 35mm....there's a lot I don't understand, I'll write a couple of things from it and see if any one can decipher for me
Tumour appears undifferentiated exhibiting diffuse and syncytial growth patterns
Coagulative......
Tumour necrosis is seen......
A 3mm intramammory lymph node close to posterior margin is effaced by metastatic ductal carcinoma......
K167 positive 90%.....
Stage pt2 pn1a.....
The one thing I read that was a bit of a worry was the clear margins, inferior was only 0.25 mm and states that its too slim on the pathology report but my surgeon didn't seem concerned,
I've got my first app with my chemo doc next Wednesday so ill find out what type I'm getting and when it's starting and how often then....
I was just wondering when you were on wormwood was that when you were on chemo or did you take that afterwards, the treatment I was reading about recommends wormwood but says its more affective if taken with black walnut hull and cloves
http://www.organicnutrition.co.uk/articles/parasite-cleanse.htm
You'll can find more info on it here,
At what stage in your treatment did you start taking astragalus?
Was it right through chemo?
The shop where I get my kernels from is a little organic health food shop not far from me and its run by a young English couple....I WAS lucky to find them or maybe fate as I parked in the wrong street to go to a different shop and would never of passed it had i not done that.....
We seem to be taking a lot of similar vitamins....the milk thistle I'm taking they reckon can help my liver cope with the toxins from chemo and reduce side affects its also anti inflammatory and antioxidant so I will probably take them right through treatment and see how I go,
Take care
Jackpot
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Hello Jackpot (Gill),
Thank you for your post. It must be a relief to have the dressings off and I was sorry to read that you are still suffering from pain. I do not know whether this is normal after a lumpectomy as I had a mastectomy and no pain after surgery. I do hope those who have had lumpectomies will take the trouble to post and say what their experiences were with pain. If I were you I would mention it on Wednesday August 21st when you go for you appointment. It could well be the healing process.
I can understand your anxiety about finding a big lump under your armpit this morning when you were cleaning the wound. I have read on bc.org about seromas, swellings that do occur. Seromas are build ups of fluid that can occur after breast cancer surgery, such as lumpectomies and mastectomies, as well as lymph node removal. Again, if I were you, it is something I would mention on Wednesday. Here is a link about seromas that you might find useful.
http://www.breastcancer.org/treatment/side_effects/seroma
Sometimes these seromas need to be drained. Get this checked because if it is painful or does not improve it could be a sign of lymphoedema developing.
I was interested to know that you got your pathology report and did not realise it would be so long. Five pages, that is quite detailed. Have you found it useful, too technical or has it caused you anxiety? I do sometimes regret that in 2005/6 there was no mention of giving me this. Goodness only knows what is in it!
It is good news that only the sentinel node was positive out of 13 lymph nodes removed. It is something we share since I had seven lymph nodes removed and only one, the sentinel node, was positive.
I have not seen the word syncytial before but I looked it up and am posting a link with the most simple explanation.
http://www.thefreedictionary.com/syncytial
Again, if anyone has more information about this, please post. This thread is all about mutual cooperation, help and support.
Coagulative. Here is a link:
http://www.thefreedictionary.com/Coagulative
As far as I know this must be to do with clotting, but anything you do not understand you should ask for an explanation.
This is the problem with pathology reports. There is a lot we may not understand. It really needs your oncologist to go through it with you and translate al the jargon and technical stuff. As a former High School teacher I would be going through this line by line and simplifying it.
I do know that necrosis, as in tumour necrosis, means cell death and that is good news.
I do not really understand the line about the lymph node. I do know, or my information is, that positive lymph nodes in the breast area is not classed as spread in the same way as spread to far organs in the body.
There has been quite a lot of posting about K167 on bc.org. The American women seem to have been given their percentage of this for quite some time and as a matter of routine. I have no idea what mine was but I think it is used as a cancer marker.
http://en.wikipedia.org/wiki/Ki-67_(protein)
This is the problem with pathology reports that are not properly explained to patients. Do not hesitate to ask for explanation.
As for margins, my understanding is that, when you have a lumpectomy, the surgeon decides whether there are clear enough margins with the first lumpectomy and if not, a second lumpectomy will be done to get clearer margins. This is what happened to a friend of mine who lives on the same street. She had two surgeries for the lumpectomy and then later had radiotherapy and no chemotherapy. However, she had positive receptors and went on Tamoxifen. She did tell me that at our hospital if there were not clear margins after two lumpectomies you were advised to have a mastectomy. I hope this information helps.
I do hope all will go well on Wednesday August 21st and that you will finally know what chemotherapy drugs you are going to have and when you will get started.
I did delay for some months before consenting to orthodox treatment. I took the wormwood and astragalus as prescribed by the herbalist I mentioned. I think I remember that he treated patients only if they had not started orthodox treatment. once I decided to go ahead with standard treatment I did not get any more wormwood or astragalus sent to me, but I think I bought astragalus capsules from Holland and Barratt and took them for a while during treatment. During treatment I mainly took pycnogenol another immune booster, and which my breast cancer surgeon had mentioned to me and told me that it was used to treat breast cancer at the Penny Brohn Centre in Bristol. As already mentioned, I saw a homoeopathic consultant to who my breast cancer surgeon had referred me and who prescribed various treatments at each stage of my orthodox treatment. I took oral Iscador throughout my treatment, also prescribed by my homoeopathic consultant. My understanding is that Iscador (mistletoe extract) is used in Germany for the treatment of breast cancer.
It is good to know that you have found an independent health food store. I just wondered whether it was run by Asians or Chinese because they seem to have good ideas about treatment of various diseases. I know that some doctors use ayurvedic treatments for cancer. I think the ttreatment is called cactol.
I also tried essiac tea when first diagnosed. There is an interesting story behind this. Just Google essiac and you will see.
I can understand why you are taking milk thistle. I have never tried it but it sounds good.
Thinking of you.
Sylvia xxxx
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Hello placid44,
I read your post on another thread and am glad to know that all is well with you. Keep up the good work.
Love.
Sylvia xxxx
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Hi Sylvia,
I have been keeping up but not posting. I have been quite ill with a chest infection since last weekend and feel quite flattened by it. I am on steroids and antibiotics, both of which I was reluctant to take but it has really taken hold.
I had a lovely day at my friends wedding and my reading went well but was feeling grotty the next day.... I put it down to the wine as I don't drink it much now. Anyway I waited but it just wont go. I am back to the GP on Tuesday as I want to go through my medications too and really find out why so far down the line I am still feeling exhausted even after the pleasantest of things. I probably am just one of the unlucky ones or maybe I expect too much. We put this later minor illness to the fact that I was so tired from looking after Oskar for 2 weeks and hospital visits.
I am really hoping to get fit again as I want to be part of our outreach program that will be starting soon and I find that feeling healthy and in control of some part of your life makes you psychologically better too.
I send thoughts to all of those going through treatment and congrats to those who are nearing the end. I always envisaged the chemo to be like one of those old pacman games rushing through my body gobbling up the bad bits, especially " the red devil".
As for swelling around under arm, I had the feeling when the numbness wore off after surgery that I had half a rugby ball under my arm. I had it checked and nothing showed up but after several check ups I brought up that it could be lymphadema. They said my arm was OK but anyway referred me and I have it in the trunk and breast, so that explained that. It just shows that we know our bodies and have to persist.
Raining here and all the flower heads are soggy and need dead heading.
I have spent the last week checking out paint colours for the sitting room as a friend of Damian's is to come and do the sitting room soon. How deceptive those charts are and I had some mixed that is nothing like I want. I should have waited until I was 100% before choosing.
Some people do all of that stuff in the Spring but I prefer the Autumn so that the house is fresh and bright for the winter and Xmas.
Sorry that I don't have much advice to offer apart from listen to your body, persist and try not to neglect your friends. they are so important as a support.
I had my 3yr mammo and it was clear and have an appt with my BCS on Thursday.
How lucky we are to have this thread for support and information.
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Hi Sylvia
I don't think the lump under my arm is seroma, I had fluid drain off on Friday at my post op and this lump is hard so I think I might phone tomorrow morning to see if I can have someone look at it, even if its just to put my mind at rest,
I'm starting to understand my pathology report a little better now ki67 it seems is how fast the tumour was growing, so 90% was quite high, but I'm still not happy with the 0.25 mm clear margins but at the same time don't really want more surgery so can't win, but I'm going to mention it when I phone....I think they should go through the report with you instead of giving you a copy to take away with you knowing you won't understand most of it.....
I think I might try astragalus and pycnogenol if you think they helped you through chemo, I have been reading about the iscador you took it sounds like its something that could really help I wonder why they don't offer it as part of treatment....a homeopathic consultant has not been mentioned to me even though they know I'm interested in alternative therapies....did you have to ask for referral or do you know if you can get it from your gp....I've just done a search for it and it doesn't seem to be available to buy anywhere
Take care
Jackpot0 -
Hi Sylvia,
We have had a busy couple of weeks. I read your comment about Combe Martin. We were only there 4 days ago and stay there for a week every year for the last 20 years. We love it there, especially the scenery. There were no signs of any bad weather from the week before.
We have been in Cornwall for most of last week as we have been looking at buying a small melt and pour soap business there, but would have to bring it back to Norfolk. Yes we have crazy idea's like this often so life is never boring. I have spent the last 2 days emptying our large garage incase we buy it.
Liz's friend had her first chemo 3 weeks ago and suffered more this time compared to 2 years ago when she first had it. Her blood test CA125? was down to 37 from 42 which is good. She had her second round of chemo 2 days ago (only 80% as they think the dose was to strong for her originally). She did have a bad reaction about an hour afterwards this time and was given oxygen I think? but still came home later that day and has been fine since.
Hello to Jackpot and EmmaL sorry to here you need to be on this thread
Its also nice to here from Sam_uk again.
Regards
Peter
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Hello linali
Thank you for your post. I was sorry to read that you are not well and I am sure that I speak for everyone when I say I hope that you will soon be better. I do hope you will be feeling better by Tuesday when you see your GP.
I think it is a good idea to sort out your medication.
Remember that cancer treatment really takes it out of you and it can take a very long time to get over tiredness. You just have to go easy on yourself. I am sure that you will have used up a lot of energy looking after Oskar!
Just as when you are in treatment you have to take it one day at a time. You have to do the same after treatment and for a long time. Remember that as the years pass treatment go by, so do your years in age.
I do hope that you will get to be part of the outreach programme but only do as much as your energy will allow.
It sounds as though you are very busy doing home painting. I am sure you will feel very satisfied when it is all finished.
You must be relieved that your three year mammogram was clear. I do hope all goes well on Thursday when you see your breast cancer surgeon.
I am so glad to know that you find the thread helpful. Comments like that keep me motivated to continue.
Fond thoughts.
Sylvia xxxx
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Hello Jackpot
Thank you for your post. I think you should get the hard lump under your arm checked out. As you say, it will give you peace of mind.
If you are not happy about the 0,25 mm clear margins, you should get it sorted out, again for peace of mind. If you just leave the problem and there is a problem in the future, you will have regrets.
I agree with you that the doctors should go through the pathology report with you and explain clearly anything that you do not understand, otherwise the report can be yet another source of anxiety and worry.
Iscador is a homoeopathic treatment, so will not be offered as part of standard treatment. My breast cancer consultant must have known the homoeopathic consultant at the hospital in Bristol. I do not know whether she regularly referred some of her patients there, but I do know the consultant in Bristol dealt with breast cancer patients. The way it happened with me was that on my third appointment with my breast cancer consultant I had to decide about treatment and I remember saying that I was not going to go ahead with the standard treatment, but wanted to be kept under supervision with her. I must have mentioned alternative treatments and I think she gave me the name in Bristol and I had to make an appointment. Everything about those appointments were referred back to my consultant. The treatment in Bristol was under the NHS at the time, but I think now the PCT (primary care trust) will not fund homoeopathy. I had rests in between treatments and when, after one rest, I wanted to go back on it, I was told by my GP that they would no longer fund it. I took the Iscador from September 2005, after my first appointment at Bristol, and took it for about five years and had regular appointments, either by phone or at Bristol. I know that in Bristol the consultant considered my treatment successful and asked for permission to use my case in her lectures and I gave that permission. It must have been, after about five years, that I was discharged from Bristol.
I found the appointments there very interesting and they were much longer than you would get at your GP or the hospital. I really felt the consultant there got to know me as an individual and, of course, the different medication you are given is individual.
I think you can buy oral Iscador. There used to be a private hospital that treated patients with it but I think it has closed down. I think everything is perhaps a bit of a muddle. There are still three homoeopathic hospitals, Glasgow, London and Bristol, supposedly under the NHS but I do not know what goes on. There is such hostility from orthodox medicine to homoeopathy and alternative medicine but seem to accept complementary treatment.
Let us know how you get on on Wednesday.
Thinking of you.
Sylvia xxxx
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Hello peterandliz,
Thank you for your post and glad to have you back with us.
As for the weather, I am always amazed at how quickly it can revert to normal. We have witnessed some nasty storms in Exmouth over the years and the seafront has been a complete mess and properties flooded, and yet in no time at all everything is calm and normal.
I can feel that there is never a dull moment with you. I was intrigued by the idea of a small melt and pour soap business and wish you every success if you start it.
I was glad to know that Liz's friend had started her chemotherapy and do hope she will be alright. It was good to know that her CA125 was going down. It sounds as though she had a difficult second round but it is good to know she was allowed home later in the day and that she has been fine since.
Keep in touch.
Best wishes.
Sylvia.
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Hello Sinfullyd and scouser 47,
I was looking back at your posts and was wondering how you were getting on as we have not heard from you for a while. I do hope that you are both well and are still viewing this thread.
I am sure we would all love to hear from you.
Fond thoughts, Sylvia xxx.
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Hello Everyone
I thought I would post a list of general side effects of chemotherapy for quick reference. They are as follows. Just remember this is a general list and that the drugs can affect us all differently.
Bone marrow suppression.
Most chemotherapy drugs reduce the production of blood cells in the bone marrow. If these blood cells are reduced you will have a lowered resistance to infection (white blood cells), anaemia (deficiency of red blood cells), bruising/bleeding (sign of a low platelet count) including nosebleeds and unexplained bleeding.
Nausea and vomiting
There is anti-nausea medication for this.
Sore mouth and mouth ulcers
Take great care with oral hygiene. Use Biotene toothpaste and Biotene mouthwash for a dry mouth. These things are common after anthracyclines (epirubicin and doxorubicin).
Hair loss
This happens with the anthracyclines and taxanes (paclitaxel and docetaxel). You can ask about a cold cap to prevent hair loss. Hair loss usually starts two to three weeks after the first chemotherapy.
Eyebrows and eyelashes and body hair can also disappear.
Premature menopause
Fatigue
All chemotherapy causes women to be tired and fatigued. You have to take it easy.
Diarrhoea
This can be controlled by medication.
Thrombosis and pulmonary embolus
Women on chemotherapy are at a slightly increased risk of complications. Any leg swelling or breathlessness should be reported to your doctor.
Problems with veins
Injecting chemotherapy into a vein damages it. The vein may become sore and hardened and the blood stops flowing in the vein. This usually settles down after a few weeks.
Cystitis
Drink plenty of fluids.
Damage to nerves
The taxanes can cause damage to nerves of the hands and feet and this can cause pain, tingling or numbness. Let your doctor know if you experience these symptoms.
Redness of the hands and feet
5-fluorouracil given through IV or oral capecitabine (Xelda) can cause the palms of the hands and the soles of the feet to become red and sore.
I experienced redness of the hands and feet on docetaxel and facial blushing on cyclophosphamide and epirubicin.
Skin and nail changes
You may get dry skin on feet and hands. You may get discoloured nails and sometimes the nails may fall off.
Dizziness/hot flush
This can happen with cyclophosphamide.
Temporary taste changes
This can happen throughout treatment. You can also lose your sense of taste.
Red urine
Epirubicin is red and your urine may be red for a day after chemotherapy.
Damage to your heart
Epirubicin and more so doxorubicin can cause heart damage. Doses are carefully calculated and there is close monitoring, so this is unlikely.
I had ECGs before and after chemotherapy.
This is just a basic outline of possible side effects. Please post if you can add information about any of these or if you want to discuss any of the side effects mentioned in more detail.
I thought I would start posting some bits of information that I have picked up from my reading of the Xandria Williams's books. This is about early warning signs, the predisposing factors that could be leading you in the direction of degenerative diseases in general and of cancer in particular. She divides her books into preventing cancer and preventing recurrence or spread if you have already had cancer. She believes in getting a test done called the CA profile. She then recommends the following steps.
1. Improve your diet.
2. Correct any nutrient deficiencies.
3. Improve your digestion.
4. Support your liver.
5. Get rid of toxins.
6. Correct your energy production and your sugar metabolism.
7. Balance your neurotransmitters. Reduce your stress levels and give your adrenal glands a chance.
8. Correct any other predisposing factors.
9. Reduce your risk factors.
These are just the basic steps and she goes on to expand them in the various chapters of her first book, Vital Signs for Cancer.
What I have picked up from the above steps is that stress appears to be a big factor in the development of cancer. It is stated that it is generally recognised that cancer becomes apparent two to three years after periods of extreme stress. It is important to learn to relax, to laugh and have fun, and try not to worry. I know this is difficult with a diagnosis of BC, but we somehow have to learn to do it or deal with stress that is unavoidable as best we can. It also states that exhausted adrenal glands are a prime cause of several problems that generate triggers which convert healthy cells into cancer cells.
I got the message loud and clear from my reading that in dealing with cancer, whatever stage you are at, you should eliminate all sugars from your diet. It appears that sugar feeds cancer cells.
Among predisposing factors are stated an under-active thyroid gland, an under-functioning immune system and faulty oestrogen metabolism.
I must point out that I am just giving a basic idea about some of the things that I have been reading. They are there for you to read and to form your own opinions. We can discuss anything you like about this information. This thread is all about exchanging ideas, experiences and supporting one another.
This should all give you food for thought.
I am posting some of the information that I posted when I first started this thread. It will be helpful especially to those newly diagnosed, who may not have the time or patience to start from page 1 of this thread, although I think it would be very helpful to do so. The following are different types of cancer to the most common invasive ductal carcinoma (IDC). I hope you will find this useful.
Medullary breast cancer.
This is a rare type of breast cancer that represents 3 - 5% of all breast cancers and affects all ages. It is more common in women diagnosed with the faulty BRCA 1 gene. It is generally triple negative but not always. It has a better prognosis than women with other types of breast cancer. The name comes from the fact that it looks like medulla, the grey matter of the brain.
Lobular breast cancer.
This type of cancer represents about 15% of all breast cancers. It is usually ER+, but can be negative. Most lobular breast cancers are HER-. On the information I was reading there was no mention of progesterone status. Another piece of information mentioned that lobular breast cancer represented 5 - 10% of all breast cancers, and that this type of cancer does not always appear as a lump.
Basal-like breast cancer.
These are usually triple negative, but not all triple negatives are basal.
Triple negative breast cancer.
These can be basal-like but not always. The majority of BRCA1 cancers are triple negative. This type of cancer represents about 20% of all breast cancers. This figure probably includes the various sub-groups of triple negatives.
Paget's disease.
This type of breast cancer affects the nipples. It represents 1% of all breast cancers.
Inflammatory breast cancer.
This is a very serious form of breast cancer and represents 1% of all breast cancers. Women are surviving this because of very effective chemotherapy drugs.
Non-invasive breast cancers ( Ductal Carcinoma In-Situ DCIS and Lobular Carcinoma In-Situ LCIS).
I do not know what percentage of cancers this represents. Some people have told me they are not included in the breast cancer statistics.
Tubular breast cancers.
These are slow growing tube-shaped cancers.
Mucinous breast cancers.
These contain a mucous protein.
Metaplastic breast cancer.
Rare breast cancers.
These include sarcomas of the breast.
There appears to be so much more information available since I was diagnosed over eight years ago. I think that those of you going through treatment today would be advised to obtain as much information from your medical team as possible, because it is in your interests. It is only my own personal opinion, but I think that everyone should know the precise details about their tumour, and the treatment available. It seems to me common-sense that those of us with triple negative should know more than just ER-, PR- and HER2-. I think those of you going through treatment now should know whether it is basal-like, whether it is medullary. I also think that a diagnosis of triple negative should enable everyone to be tested for the BRCA1 or BRCA2 genes. I think the NHS should provide this, as going privately is too expensive. There is a lot of waste in the NHS, and I think that our taxes should give priority to first-class treatment for every patient and accessibility to all available drugs and tests. We have to learn to push, as the American women do.
I have been reading various references to different breast cancer chemotherapy drugs and noticed that sometimes the brand name is used and sometimes the generic name, so I thought it would be useful to list them in an orderly manner, to help those newly diagnosed and starting chemotherapy, as well as those going through treatment. My main aim in starting this thread was for us all to inform and support. I have listed them, as brand name, generic name and any other information I have. I would be interested to know which drugs any of you are having. When I was going through treatment I had three months in three-weekly sessions of combined cyclophosphamide and epirubicin, and three months in three-weekly sessions of docetaxel. I know different trials were taking place at that time, so different combinations are probably being used.
Brand name Generic name Other information
Navelbine vinorelbine anti-cancer drug,
Gemzar gemcitabine anti-cancer drug,
Avastin bevacizumab an anti-cancer drug and anti VEGF drug,
Xeloda capecitabine anti-cancer drug,
Paraplatin carboplatin platinum-based chemotherapy drug,
Platinol cisplatin platinum-based chemotherapy drug,
Taxol paclitaxel belongs to the group known as taxanes,
Taxotere docetaxel belongs to the group known as taxanes,
Ellence epirubicin a cytotoxic anti-cancer drug,
Doxil doxorubicin a cytotoxic anti-cancer drug,
Lypholized/ Cytoxan cyclophosphamide an alkylating agent,
Carac fluorouracil an anti-cancer drug.
I think in the US PARP inhibitors, such as iniparib are being used. I was told recently that PARP inhibitors were a long way off in this country.
For all of you about to undergo chemotherapy, if it is still the same, I remember from my treatment that all of us patients were in a ward specially kept for those of us on chemotherapy. We sat in armchairs and were hooked up to our chemotherapy drugs. The drugs were not prepared at the pharmacy until we arrived for our appointment and before we were checked out to make sure that we were well enough to go ahead. This depended mainly on our blood test readings, especially the haemoglobin reading. The drugs were fed through a cannula attached to the back of the hand. Since I did not know about the ward etc., I was a little perturbed about everything, but soon settled down. You will all do the same. A chemotherapy day is a long day, so just be relaxed about it, and have a good rest when you get home. You will be told before leaving to make sure to flush out your system by drinking plenty of water and to take the pills that they give you for a few days. By doing this, it will help to prevent or alleviate any sickness or nausea. I did not suffer from any of this.
Best wishes.
Sylvia
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Hi Sylvia
Very informative, and very helpful to myself and anyone else who is about to start treatment....I didn't know there were so many different types of chemo,
I've had more advice on here than anywhere else and don't feel this is going to be such a daunting experience after all,
Just to let you know I phoned the Linda mc centre at 1.pm and was seen too at 2.30 pm, that's service for you isn't it, the lump under my arm turned out to be a little pocket of fluid in an unusual place.....they had trouble draining it so its still there though a little smaller now.....but at least I know what it is and can stop worrying now
Take care
Jackpot0 -
Hello Jackpot,
Thank you for your post. I was glad to know that you found all the information about chemotherapy etc. helpful. There are a lot of different chemotherapy drugs but the most likely ones to be used are epirubicin (Ellence), cyclophosphamide (Cytoxan) and one of the taxanes, docetaxel (Taxotere) or paclitaxel (Taxol) and it seems sometimes that fluorouracil is added with the epirubicin and cyclophosphamide. It will be interesting to see what they suggest for you.
It is good to have all this information as it does empower you at your appointments and does show the experts that you are not in the dark about your treatment.
I was glad to know that the lump was a pocket of fluid and I know this is quite common. I suppose it will gradually disappear. It must be so reassuring to know that you can get prompt treatment at the Linda McCartney Centre. When something does not feel quite right it is a relief to get it dealt with and relieve a source of anxiety.
I do hope all goes well today at your appointment.
Thinking of you.
Sylvia xxxx
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Hello everyone,
Please keep the thread going.
Best wishes and hope you have a nice day.
Sylvia.
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I have nothing stellar to add here, but thought I would mention that now that I'm at the end of my Taxol infusions almost (Friday and next Friday and I'm done!) the effect seems to be suddenly cumulative and it is kicking my butt fatigue wise. The last infusion absolutely knocked me down. Still no illness which I'm so grateful for, but here at the end I am having some incredible fatigue issues. I feel so grateful that I made it through 9 infusions of Taxol easily! When you all hear some hooting and hollering coming from the east next Friday around the time the East coast is waking up, that'll be me celebrating!
Back in January when all my problems started and then in March when my chemo started it really seemed like August would not be arriving this year...and here it is, yay!0 -
Good afternoon Sylvia
I had an enjoyable few days in London last week but I do forget how humid it gets there in the summer. It is such a crowded city as well, certainly more than when I lived there, mind you I lived in the leafy south west whereas my s-i-l lives in Hackney. I was thinking to myself this morning that Chelmsford has hardly changed from when I started going there 37 years ago.
I was listening to a program on Radio 4 this lunchtime about a type of IV drip that has been used all over the world, for years, that has suddenly been withdrawn as it seems it may have been causing renal problems. I wish I had paid more attention but it seems that the doctor who introduced this type of drip had just made up his research results. The program is probably available as a pod cast or there will perhaps be more on BBC news tonight. I will pay more attention if it is.
It is very overcast here today and it looks like rain so I need to get the dog walked as she refuses to go out in the rain. She must be concerned about her hair getting wet but as she looks like an unshorn sheep at the best of times I don't think she should be so fussy
Michael
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Hello susaninicking,
Thank you for your post and nice of you to pop in. Hang in there, you are nearly at the end of this long chemotherapy journey. We shall all be thinking of you and cheering you on in spirit as you cross the finishing line.
It is quite true that there is a cumulative effect as the chemotherapy treatment progresses and many women say they feel really exhausted. What I found was that the nurses found it more and more difficult to get blood from my veins and somewhere to put the cannula as I got near the end. Just remember how toxic the drugs are and the toll they take on the immune system. Get as much rest as you feel you need, carry on drinking all the water and eat as healthily as you can, especially anything that you feel might energise you. You celebrate all you can on August 30th.
You have done the greater part of your journey.
I was wondering what has happened to your American friend that was also going through treatment in Germany. Do you keep in touch?
Thinking of you and sending best wishes to you.
Sylvia xxxx
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She moved back to the states, boo. She slid through with rads only, was hilarious talking about this bit of fortunate luck (relative isn't it) and has been a big help on filling me in and getting me ready for the German way of doing things. We are in touch via fabby Facebook. I'll tell her you asked about her.
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Hello Michael,
Thank you for your post. It is always a pleasure to hear from you.
I was glad to know that you had a few enjoyable days in London last week. It is true that London gets very hot and humid now and it is a seriously overcrowded city. I think in many ways it has probably been spoilt by too much expansion. What is Hackney like these days? I understand it is a real mixture and that it is one of those places where it has gone through a process of gentrification, but there is still much poverty. I think Alan Sugar came from Hackney. I have seen the outside of his big home in Essex on a secluded road in Chigwell and it is very close to an olde worlde pub. Raymond has been inside his mansion when he worked for him.
I was very interested to know that you find that Chelmsford has hardly changed from when you started going there 37 years ago. That takes us back to 1976. That is about the time that I started going there and Chelmsford was one of my favourite towns along with Exeter. We used to park in the multi-storey car park and walk down through the market there. We then went through the first indoor mall, where there used to be a Sainsbury's and a C&A that got closed down. We often went to Thorton's there for hot chocolate and sandwiches. We used to go in the second mall to get our hair cut and on the way to it would go into Bolingbroke and Wenley's where we often had lunc and where I used to buy coats. It was so pleasant everywhere and we used to walk over a bridge to Moulsham Street. We spent loads of time in the library and I got to know the staff very well, as I used to read my way through all the French books and the librarian would order any new French books I wanted. It was a different story when we came to Devon and I have sadly neglected my French.
Raymond actually lived I Chelmsford for a time before I knew him and actually started work as a student apprentice for Marconi's, also sadly long gone. He worked there for 14 years and actually lived there for seven years from 1965 to 1972, so he has probably noticed more changes than I have. When we came back from Canada if we had moved to Chelmsford we might probably still be there!
I also really loved Exeter and got to know it because my brother moved there in 1971 and I used to visit. It has changed into a big crowded noisy town and I have gone off it.
I was interested to know about the programme you had been listening to on Radio 4 at lunchtime. What programme was it? I know there is a 45 minute news on at 1pm which is excellent. I have just looked in the Radio Times and found the programme that you mean. It was on at 12:30 and was called Face the Facts and was 6 of 6. It says in the Radio Times “A medicine that may have caused 1000's of Hospital Deaths”. It says it is repeated on Sunday at 9 pm. I am going to try to trace it all.
The link to the podcast is:
http://www.bbc.co.uk/programmes/b038hfr4
I shall try to follow the news as well. We have to keep the little grey cells functioning.
Are you glad to be back in Northern Ireland? I think I would like the climate, as more and more I cannot stand the weather when it is too hot and too dry. I think I would like a place that is not as crowded as England. We do sometimes miss the wide open spaces of Canada, but not the winters nor the very hot summers in which I used to get devoured by black flies and mosquitoes. Do you think you will stay in Northern Ireland?
I did laugh at what you said about your dog and her not liking the rain. I like your smiley and I like the smiley from susaninicking.
Do you do a lot of reading? I have a book which I know will be interesting but I have only just got past the first chapter. It is non-fiction by Dr Hilary Jones and is entitled A Day in Your Life, Twenty-four hours inside the human body. The first chapter was very informative, serious, funny and entertaining.
That is about all for now. Keep well.
Best wishes.
Sylvia.
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Hello sam52,
I just wanted to say that I had a letter back from my GP about the CTX marker blood test about which I had written to her. She enclosed a copy of the letter that the rheumatologist at the RD&E hospital had sent to her. Needless to say, the rheumatologist has said she does not feel that it would be helpful in my case. I think this is typical of the closed mind that there is in the NHS. There is no mention of the strontium citrate that I am taking and both of them are just trying to talk me into taking bisphosphonates which I will never take. The strange thing is the GP says that she does not have access to the test and the rheumatologist says that the test is not performed in the South West. Do we once again have a kind of postcode lottery? I thought we were supposed to have a NATIONAL Health System!! I would be interested to know whether it is available in London and the South East. I am going to reply to these letters and ask where I can get the test.
By the way, I was not very impressed with the way the letters were written. I think the English language is going down the tubes and people are not taking in information.
I hope things are as well as can be expected with you and that you are managing to have a bit of a holiday.
Take great care.
Love.
Sylvia xxxx
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Hello everyone,
I hope the week is going well for you.
To adagio, we have not heard from you this week. I hope you are well. You are probably enjoying a break and preparing for your holiday.
To Carolben, I hope you are taking good care of yourself as you wait for your scan at the end of August.
To linali, I hope everything went well with the GP yesterday and that all will go well tomorrow when you see your breast cancer surgeon.
To InspiredbyDolce (Debra) and PeggySull, I have missed our two American friends this week and hope all is well.
To EmmaL and Sam_UK, hoping all is well with you.
Love to all of you.
Sylvia xxxx
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Hello InspiredbyDolce (Debra)
I have just been catching up on some of my reading of other threads on the Triple Negative sites. I saw the link you had posted and had a look at it. I found it most interesting and so I am posting it here for everyone to read, benefit and comment. I am sure you will not mind as we need to get all information out to the greatest number of people.
To everyone, here is the link.
http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html
Please read it. It is for your benefit.
I must say, Debra, I was very saddened by so much bad news on the Calling all TNS thread. My heart goes out to those women going through metastases, recurrence etc. There are too many women being diagnosed with breast cancer.
Wishing you well and thanking you for all the efforts you put into the threads.
Fondest thoughts.
Sylvia xxxx
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Good morning Sylvia,
I have to say Hackney is not my cup of tea but then I have always felt uncomfortable any time I got north of Kensington. London is like two cities, l would be more familiar with Brussels than north London. Hackney seems to have two classes of citizens, the ordinary working class and the art/media Americano drinking types.
It is nice to come home to NI and familiar surroundings but I do feel more comfortable in Chelmsford/Brentwood. My stepson might be coming to stay with me for six months whilst he does a course in Belfast, so that would be nice.
Unfortunately I don't read much. I used to but when I had my first course of chemo I lost the ability to concentrate.
The children in the village are having their last fling before school starts. I must say it is nice living in a community with a good mix of age groups. Where my friend lives in Ferndown, we at 60, must be regarded as feral youths :-)
Michael0 -
Hi Sylvia
I've had my first appointment with my chemo doc, it went ok, and it doesn't look like I'm going to be getting as much as I was originally told ( 7 months ),
Now it's 6 lots over over 18 weeks so it works out I get my last one the week before Xmas so that's good, like an early Xmas present....I don't know if radiotherapy starts straight away or whether they will leave it till after Xmas,
The combination they are giving me are
First three
Flororacil
Ebirubcin
Cyclophosphamide
And the next three its
Docetaxel
They give me lots of information to take away me on the procedure and the side affects and so on.
Ill be starting chemo on the 4th sep putting it back a week because I'm doing a wedding on the 31st aug (my bosses) so it will be nice to be doing something normal,
I'm having a pre op on the 30th aug just to check everything ok,
It's a lovely day here in liverpool today so I think I'll take the dog out for a long walk to tire him out,
Take care
Jackpot0
