Calling all triple negative breast cancer patients in the UK
Comments
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Hello Bernie,
Thank you so much for all that information about massage etc for peripheral neuropathy.It is very interesting and useful. I do have a brush for massaging as well, and find that useful.
I hope you are having a good time in England and that you find your brother in good spirits.
Love, Sylvia.xxx
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Hello Liv,
Thank you for your post. I felt so happy to have you back on the thread, but I do understand that you all need to take a break from time to time. I think we all agree that we have to put TNBC out of our mind as much as we can and get on with enjoying life. We have become a little family and we do worry if one of us goes missing.
I am sure that going to the beach and getting some sunshine does you a power of good. The weather here has been miserable for months and I am longing for some warmth and sunshine.
Remember, liv, that you can talk about anything you like on this thread. It does not have to be about cancer. Talking about your daily life, your ups and downs, is all a form of comfort therapy.
I was glad to know that you are taking metformin well and you are right to look for other treatments and trials in case the Navelbine ceases to be useful.
Say hello to your mum and dad.
Love
Sylvia xxxx
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Hello Carolben.
I do hope all will go well when you start your chemotherapy next Friday with Taxol (paclitaxel).
Did you not have a taxane originally? Have you had any Taxotere (docetaxel)? I have never quite understood the difference, as they are both taxanes.
I have not heard of painting nails red or black. If it were me I would not do it. The taxanes can make your nails go brown and some can fall out, but they do recover. I would prefer to be able to look at my natural coloured nails to see what is happening to them. I had just one toenail go brown and the nails on my hands remained normal. I do remember reading that some women use ice pads, but I did not. My oncologist was against ice caps on the head for fear of infection, so I did not have that either. I did not have any tingling in my hands or feet, and only became aware that the soles of my feet felt strange after I had finished all my treatment, including radiotherapy.
As for the vascular port, I did not have it when I went through the six months of chemotherapy before surgery. I just had cannulas installed at each session. It was when I was preparing for surgery that the oncologist asked me if I would consent to having a vascular port installed at the same time, in case I needed more chemotherapy later on. First of all I said I did not want one, because I did not like the idea of a foreign object in my body. Somehow she talked me into it and said that I might never need it and it could stay there for life. When I had the surgery, my breast cancer consultant did the mastectomy and another surgeon inserted the vascular port. It was on the left side, just above my good left breast. When I woke up from surgery I had no pain from the mastectomy but is had pain on the left side. My consultant came to see me and I told her about this. She had a look and found that the other surgeon had installed the port and left a needle in as he thought I was going to have chemotherapy straight away! My consultant had someone come to remove the needle and the pain disappeared. I still have quite a scar where the port was.
What the oncologist did not tell me was that I would have to come in every three months to have the port cleaned through saline and heparin. For the first session everything was fine, but the second time I went to have it cleaned it was blocked. I had to go for an x-ray and it turned out the port had kinked and would have to be removed. I was told this was rare. I had to go in for day surgery to have it removed under general anaesthetic and that was the end of it. I said I would not have another one and I was told that if one failed I could not have another one anyway.
The time that I was wearing it, it was attached to a vein in the chest and I was well aware of it.
Do you think this is what you are going to have? There are other choices.
I was glad to know that you are able to get out and go swimming. I am sure it must do you a lot of good. It is good that you are still feeling physically well as it will help you cope with the chemotherapy. It is good to have a positive attitude.
I was glad to know that your appetite has improved as well as your mental state and your energy levels. This will help you to face your chemotherapy with confidence.
Keep eating the dark chocolate as I keep reading how good it is for you. I have a cup of hot cocoa most afternoons. It is Green and Blacks 100% organic black cocoa. I make it with fresh soy milk enriched with calcium and it really energises me in the afternoon. If you are looking for the best chocolate, I think it is Lindt 90% dark chocolate.
If you can face watercress it is supposed to be excellent for fighting cancer. It is up there with broccoli.
I can understand about the sushi, especially if it was made with raw fish. I was told not to eat any raw foods during chemotherapy or any seafood, but cooked fish is fine. Eat some watercress now but not during chemotherapy.
That is about all for now. Remember we are all thinking of you and we are all here to help you through this.
Love.
Sylvia xxxx
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Hello InspiredbyDolce (Debra).
Thank you for your post and thank you for that information about dandelion tea. It is something we can all add to our daily nutritional programmes.
As for what I took for three years, I think you must mean Iscador. It is made from mistletoe and is an immune booster and anti-cancer fighter that is used quite a lot in Germany. I took it as soon as I was diagnosed after seeing a consultant at the Royal Homoeopathic Hospital in Bristol about two hours from where I live. I was referred there by my breast cancer consultant, who often referred some of her patients there. I took it orally all through my breast cancer treatment and for about a year afterwards. It can be given through injections but I was told not to do this because of the chemotherapy. I stayed with the hospital in Bristol all through my treatment and took homoeopathic medication at every stage of my breast cancer treatment, surgery, chemotherapy and radiation, and was not at all ill through all of that.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hi Jenn.uk, just wanted to say how sorry I was to hear about your Toby - bless our animals, they are so loyal and each one takes up part of our hearts. I know how sore it is to lose a beloved pet, 2 years ago today, my beloved Lab Phoebe died in my arms. Wish I could give you a big hug, but know Toby will always live on right there in your heart
love xxx
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Hi Sylvia, thanks for your informative post, you are a great mine of information, thank you for that! I have some 85% cocoa dark chocolate in the cupboard, will get the Lidnt too. Love the idea of the hot chocolate, will see what we stock out here.
It sounds like you had a horrible experience with your port. I know about the flushing every 3 months, and my friend said the first chemo into it was painful. She suggested I use Emla cream and an Emla patch, which has a local anaesthetic. What are the other options? I'd really like to find out.
I'm not mad about putting on nail polish, so thanks for your assurance it's not necessary, I've rarely ever used nail polish before. My onc did suggest a clear, colourless polish tho. But then what about if you have to take if off and can you use acetone, maybe it's best just to leave it alone, hey? Am going to copy the info from Bernie about the massage for peripheral neuropathy, and give it to a friend of mine who is a massage therapist. In any case it's not a given that that will be a side effect I'll get.
I also bought a packet of watercress today to juice - why should it not be eaten during chemo?
No I have not had Taxane or Taxotere or any of that before, just endoxan and adriamycin. I'm, quite naturally, a little apprehensive of a new chemo drug, not knowing how I'll react to it, hoping like mad the cancer cells will react to it as they hope it will. I guess we'll only know if it's working in 3 months when they'll do another CT scan to check.
Hope you have a happy Sunday, Syvia,
Lots of love
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Hello Carolben.
Thank you for your post.
It is true to say that I was not happy about what happened to my vascular port. I think this kind of port was being pushed at the time. Since I was fortunate enough not to need any more chemotherapy, I did not get to experience what it would have been like to have chemotherapy treatment via this port. I know that if I do have a recurrence, metastases, or a new primary, I shall have the treatment via a cannula. This is a personal decision. I did not have a problem with the cannula for the six months of my chemotherapy treatment, although it was more difficult to find a vein towards the end of treatment.
I have been looking up about ports and have found an article about them and about tunnelled ports. Apparently this includes the Hickman line, which seems to have been the most common one before the vascular ports were brought into use. You might like to look at the following links.
http://www.livestrong.com/article/74382-types-chemotherapy-ports/
http://mikki630-ivil.tripod.com/id3.html
http://www.veins4life.com/faqs.php
I would make sure that you have the port with which you are most comfortable and do not be shy about asking your oncologist any number of questions that you feel are relevant.
As for the nail polish, it is something that I have never used. I think nails are healthier left alone, and goodness only knows what is in nail polish and nail polish remover. Nothing that does the nails any good I think! I think these nail polishes probably put you at risk of fungal nails. I know that when I had surgery and read all the information before I had it, it stated quite clearly that you should not be wearing any nail varnish.
If I were you, I would ask your oncologist about the do's and do not's of food during chemotherapy. I remember clearly reading on the sheets I was given not to eat any raw foods or salad, because of the risk of infection. It was the same for seafood. It would be interesting if you asked your oncologist about this to see if you get the same advice. Like that we all get different information from different countries. I remember being told by the Hospiscare nurses, whom I had opted to have on weekly visits during all my treatment, to eat a high protein diet. Of course, in this country, they seem to push meat, poultry and dairy products, which I would not touch. I ate a lot of poached fish with mashed potatoes and cooked vegetables. I am not one for mashed potatoes usually but found them very appetising during chemotherapy. I had them nicely mashed up with fresh unsweetened soy milk and soy spread. They were nice and filling. I did eat fruit all through my treatment. I think we all try to do what we think is best for us. I kept my red and white blood cells up mainly through food and I did take iron tablets. Always ask you oncologist's opinion before you do anything, then weigh it all up and do what you think is best for you. I ate prunes and dried figs through treatment to keep constipation at bay.
I am sure you will be fine and I know that you will do your very best to get through this treatment. Remember to drink plenty of water, especially straight after treatment, get plenty of rest and remain strong in thought.
The taxanes, whether it
is Taxotere (docetaxel) or Taxol (paclitaxel), are said to be very effective for triple negative breast cancer.We shall all be with you all the way and wishing you all the very best.
Please ask as many questions as you want. Are you looking at the website for What Doctors Don't Tell You? There is so much information on there. You might want to look at the following headlines by clicking on www.wddty.com and clicking on News. There is information about a new gentle therapy for breast cancer that is saving more lives. It says that chemotherapy, radiation and invasive surgery are being abandoned for gentler approaches, with better cure rates. This is dated October 10 2012, so it is recent. It is about targeted therapy. I picked up on the line that chemotherapy drugs are also being abandoned for women with TNBC.
Another headline was about broccoli and how scientists are saying that it combats even the most aggressive cancer. Brussels sprouts also have the same effect. Remember these views are what others are claiming and saying that these vegetables are also effective against TNBC. Apparently the active ingredient is dindolylmethane (DIM).
I would love to have your comments on these two articles if you have the energy to read them. It is good to have interactive discussions.
Love.
Sylvia xxxx
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Hello everyone,
I am just popping in to say that I hope you all had a good weekend and that you tried to put TNBC out of you mind. I hope you will all have a positive week and cope with whatever pops up.We shall all be thinking of those of you who are facing treatment.and hoping that all wil Wlgo well for you.We shall have special thoughs for Carolben and JennUK as they await chemotherapy.
A special Hello to Michael and please let us know whether you have now started treatment. As for liv I hope you will have a good week. I have friends on a six week holiday in Australia at the moment and they are loving it. Another friend has just flown off to South Africa for four weeks. They were all glad to get away from the weather here.
I hope Mumtobe will have a good rest while waiting for radiotherapy and put TNBC out of her mind. There is more to life than these threads, important though they are to all of us. Do not be too strict on yourself.
Best Wishes,
Sylvia.
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Hi all,
I just had a nice post from Silvia about maybe joining this forum. I'm in Germany but I really love English so I'm looking to you for neighborly support. I'm actually American but live here permanently and all treatment will be happening here. I'm also triple negative but detected early so I have high hopes. I spoke this afternoon to a lovely German lady in the next village who just finished the same chemo that I will be having and she described it as "really and truly not that bad." Music to my ears.
So I just wanted to introduce myself as someone who might be hanging out here for a bit....my chemo starts next month as soon as a few other issues are resolved. I'm 57, luckily have a terrific husband, no little ones at home (how do you do it?) and a job that will wait until I'm ready to go back. Lots on my side. Thanks
Susan
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Welcome Susan,
Even if you were in the US, I think you'd find these boards a great way to stay in touch with others who are trudging the same path to health.
I'm spending a lot of my tired down-time reading about diet and exercise that has the potential of preventing a recurrence.
How do you find the medical system in Germany? Dietary recommendations?
At what point are you in your treatment?
Peggy0 -
Hello InspiredbyDolce (Debra)
I was just wondering whether you have tried any dandelion root tea or dandelion root extract? I noticed that the Canadian Research in Windsor was talking about leukaemia. Nevertheless I did see some dandelion tea, proper leaves, so I am going to try some of that.
I am always interested to know of any links that you find that you think will be useful.
Best wishes.
Sylvia xxxx
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Hello Carolben.
I found this explanation of a Hickman catheter and thought it might be of interest to you. It is as follows.
A flexible plastic tube, also known as a skin-tunneled catheter, that is passed through the chest and inserted into the subclavian vein, which leads to the heart. It is often used in people who have leukaemia or other cancers and need regular chemotherapy and blood tests. The catheter allows drugs to be injected directly into the blood stream and blood samples to be obtained easily. It is inserted under local anaesthesia. A Hickman catheter can remain in position for months; the external end is plugged when not in use.
I expect you are counting down the days until Friday.
Thinking of you.
Love.
Sylvia xxxx
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Hello Susan.
Welcome to our thread where you will find lots of information and comfort as you go through this cancer journey. I was so glad to know that you had read my post in answer to yours and I know you will find support on this thread.
I want to reassure you about your treatment and that you will get through it. As I said, FEC (fluorouracil, epirubicin and cyclophosphamide) is a common combination of chemotherapy drugs for treatment of breast cancers here in the UK. The taxane drugs, Taxol (paclitaxel) and Taxotere (docetaxel) are also in common use and are very effective against TNBC. Your kind of cancer IDC (invasive ductal carcinoma) is also common and it is not unusual to have a mixture of receptors in one tumour, or more than one tumour with different receptors. It will be interesting to see what your DCIS is.
I was so glad to know that you have spoken to a lovely German lady who has just finished the same chemotherapy as you will be having and it was good to know that she has been able to give you some reassurance about your own treatment.
Please let us know when you start chemotherapy so that we can support you. It will be interesting for all of us to compare your treatment in Germany with our own in our different countries. You will need to know what kind of regime you will have, whether chemotherapy every three weeks, every two weeks or every week. Mumtobe (Carol) in Ireland has just finished a course of chemotherapy which she had every week and has found the side effects to be a lot fewer than people seem to have experienced on the every three weeks. You will probably be told about ports that are used to administer the treatment and make it easier on the veins.
I think that is enough information for you today, but do not hesitate to ask any questions you may have and we shall all try to answer.
It is good to know that you have a supportive husband and work that you can resume when you feel up to it.
Thinking of you and wishing you all the best.
Love.
Sylvia xxxx
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Hello Peggy.
I hope you are doing well as you go through chemotherapy.
I was interested to know that you are spending a lot of your time during chemotherapy reading about diet and exercise that might prevent recurrence. On this thread, since inception, we have all had a keen interest in nutrition and keeping active as a way of preventing our cancer from coming back. I am sure we would all be interested to know what you have read and what tips you have.
Welcome to the thread.
Very best wishes.
Sylvia xxxx
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Sylvia - did you have paclitaxol as part of your chemo protocol? I am on dose dense taxol and to help prevent neuropathy I take 30 grams of L-glutamate every day, a B-complex along with additional B6 and B12. I also take L-carnitine - so far so good. I have heard that even after chemo these should be continued. Have you heard of this? I have read that the B vitamins are beneficial for nerve related issues.
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Welcome Susan . . I am only a bit younger than you, my DX was last spring, Stage I - TN - - am doing fine. You CAN do it!
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Hi Sylvia & everyone,
So relieved to be finished chemo, so great to know that I don't have to head in on Wednesday. Starting rads on the 25th for 25 sessions + 3 boosters. Since my final tx though I am absolutely exhausted and have pains in my muscles and joints. This has only come on me since last Wednesday, strange how it didn't occur prior to this but I understand this is normal. I find it hard to hold Emma for any length of time because my arms ache so much but Emma is a big baby and is a full stone in weight (14lbs) so I guess I shouldn't be so hard on myself
. Have found the last few days difficult emotionally. Had a good cry for myself on and off, it's scary but I have offered myself up to the Lord and what will be for me will be His will.Susan just to let you know I had Taxol weekly (Sylvia had posted that I was treated every two weeks but it was every week). It was very doable. My hair stopped falling out and I now have almost 3 inches of hair. Minimal side effects (fatigue and aching joints). It was paclitaxol. Best of luck with treatment.
Sylvia I have discovered a new love for raw brocolli with some salsa. It's delicious and I actually prefer it to cooked brocolli. That and celery with salsa! My new favourite snacks
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Mumtobe I think the accumulative effect of the chemo is the worst those couple days to one week after its done. It WILL get easier. And - sigh of relief - OVER.
I didn't do rads. Good luck. 0 -
Sylvia and others. In terms of nutrition I am planning to combine thee plans--the Pink Ribbon Diet contained in a book tailored toward prevention of breast cancer and recurrence; the Rainbow Diet; and the American Cancer Society low fat diet. Combining these will be a bit of a challenge but I'm very motivated to do so. In between the end of chemo on March 11 and mastectomies/reconstruction I'm hoping to get a friend to help me make and freeze some of the entrees, especially those in the Pink Ribbon diet.
All my reading has convinced me that one hour of exercise daily is critical. It doesn't need to be continuous or the same but must be (eventually) active enough to break a sweat.
There is so much good information on this thread about nutrition that I plan to retread every post while I'm recovering from surgery. A big take-home message I've learned so far is to try to get most vitamins and minerals through foods rather than supplements because it is often the synergy of various elements in a food(e.g., brocolli) and the variety of colorful veggies and fruits that may be most powerful.
All this does not guarantee that cancer won't return but I believe it adds some percentage points towards beating this thing.
Peggy0 -
Hello everyone.
Thank you for your posts, adagio, Mumtobe, FernMF, PeggySull.
I shall be replying later on today.
To adagio, I have added my treatment to my profile so that you can read the details there. I have been trying to put them on my signature but cannot get it to work. I had epirubicin (Ellence), cyclophosphamide (Cytoxan) for three months and then docetaxel (Taxotere) for three months, every three weeks. I had a mastectomy to the right breast, seven lymph nodes removed, only sentinel positive, and then radiotherapy for three weeks with boosters. The boosters are included in the normal sessions.
Mumtobe, sorry about the mistake. I do not know why I wrote two weeks as I have been following you through your weekly sessions. I am going to edit it.
Enjoy your day, everyone. Talk to you later.
Love.
Sylvia xxxx
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Hello everyone.
My details have now appeared.
Best wishes
Sylvia.
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Hello adagio.
Thank you for your post. You will see now from my details that I did not have paclitaxel, but docetaxel, which, as you know, is a taxane like paclitaxel. It would be interesting to know what the difference is in the make up of the two drugs. I seem to remember that docetaxel came from the yew tree. All I can say is that when I asked my oncologist why she had chosen docetaxel for me she said it was less harmful on the heart. That was back in 2005 when I was beginning treatment.
With the dose dense Taxol (paclitaxel), it seems to be that side effects, at least while going through treatment, are not so bad. When I was about to start treatment I had to give my height and weight to the oncologist and she said that the amount of drug given was worked out on this. The day before I had the treatment, I had to get a blood test done and this was sent to the hospital where the results were ready when I arrived at the chemo ward. Once I had checked in, the drugs were then made up at the pharmacy, and brought to the ward. If everything was OK, especially with white and red blood cells, the treatment went ahead. I never had any problems and my treatment never had to be postponed. In the ward the nurses settled you in a comfortable armchair, got you installed with a cannula, hooked you up to a pump, and you sat while the drugs were fed into your body. There was no pain and you could sit and read, chat or have your lunch etc.
I did not have Neupogen or Neulasta shots during my treatments, to keep the blood cell count up, but I think it is in common use now. My understanding is that it is a very expensive drug and not without its own side effects.
At the time, the possible side effect of peripheral neuropathy was not mentioned to me. In fact, I was only aware that my toes and soles of my feet did not feel quite normal, stiff and numb after I had finished chemotherapy and radiotherapy. My oncologist told me that it was definitely due to the docetaxel.
I have not heard of 30 grams of L-glutamate every day, a B-complex with additional B6 and B12, to prevent neuropathy. If you have got this information from a reliable source, I cannot see the harm in taking it to try to prevent the neuropathy. I was interested to know that you are also taking L-carnitine, which is, I think, an amino acid. Will you take all this long term? Let us know how you get on with your treatment.
I had been taking a complete B vitamin supplement in addition to what I was taking in a multi vitamin/mineral tablet. For the moment I am taking just the multi, in addition to calcium supplements and vitamin D3 capsules for osteoporosis, which I think was also mainly caused by the breast cancer treatment.
It is good to have someone from Canada on here, as we need to know what is going on in different countries.
Best wishes.
Sylvia xxxx
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Hello Mumtobe (Carol).
Thank you for your post. We shall be thinking of you on February 25th as you begin your radiotherapy. Those five weeks will keep you very busy. The treatment does not last long, but it is going in every day five days a week. That is tiring.
I hope the pain and exhaustion will ease up. Please take it easy. Bear in mind that you have given birth to baby Emma in the midst of all your treatment. It is no wonder that you are feeling exhausted.
I agree that raw broccoli does make a good snack and it is supposed to be better for you than cooked.
Keep looking ahead. You are nearly there.
Love.
Sylvia xxxx
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Hello PeggySull.
Thank you for your post. I think you are doing an excellent job combining those three different diets. The Rainbow Diet is excellent and easy to follow. It is a question of picking out all the deep coloured fruits and vegetables and having a mixture of them. The food with all these colours looks very attractive and is very appetising. I have just made a meal of wild Atlantic salmon with lemon edges, a few new potatoes, fresh cooked spinach with some red kidney beans on it, a mixture of Brussels sprouts, sweet potato, red onion, leeks and some tomato halves cooked in olive oil!!!
Physical activity is also very important. I believe walking is sufficient, gardening is excellent and generally keeping on the go as much as possible. It is also important to keep the brain active and avoid any stress that affects you negatively.
We do discuss nutrition a lot on this thread and if you do read the back posts I am sure you will find them interesting. You are absolutely right about getting your nutrients from good food rather than taking supplements. I have only three bottles in my cupboard, as stated, a multi, calcium and vitamin D3.
We cannot guarantee that we shall not get breast cancer or that we shall prevent a recurrence, a new primary or metastases, but at least we shall have made an effort to control what we are able to control. Our food and drink, our activity and our daily life to a certain extent.
We all look forward from you again.
Best wishes.
Sylvia xxxx
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Hello everyone.
It is Tuesday evening here in Exmouth and I do not know where the past two days have gone. I have been busy with my volunteer work as a director of our apartment complex and busy keeping the thread up to date.
I am trying to get to read some books, but each day I run out of time.
Special hellos to BernieEllen and linali in Ireland. I hope all is OK with both of you.
To Michael in Northern Ireland, please post and let us know you are alright.
To sam52, only three days to go and you will be on half term. I shall be getting my blood test results tomorrow and a discussion with the GP on February 22nd about them.
To JennUK, do you have a date for your chemotherapy yet? How are you spending the time while you wait?
To Liv and Lolalee in Australia, I hope all is well.
To Carolben in South Africa, not long to go now before you start your chemotherapy.
Chemotherapy is such a big part of the breast cancer journey, so please do not hesitate to post any questions you may have. It is important to go to your chemotherapy treatment with as much information as possible, and in a relaxed and confident manner.
Many thanks to all of you for your great contribution to this thread. Remember, you can discuss anything you like.
Best wishes.
Sylvia xxxx
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hello everyone ((hugs))
just got my genetic test results. NEGATIVE - inconclusive - we have not identified a gene fault that would predispose to cancer.
this now lowers my risk of ovarian and other cancers.
http://www.breastcancer.org/symptoms/testing/genetic/pos_results
BRCA1- and BRCA2-related cancers often test negative for overexpression of the gene known as HER2/neu. This genetic abnormality is not inherited, as BRCA1 and BRCA2 mutations are, but can develop in women over time. When the HER2 gene is overexpressed, the cancer cells have too many HER2 receptors (human epidermal growth factor receptor). HER2 receptors receive signals that stimulate the growth of breast cancer cells. HER2-positive breast cancer is considered to be a more aggressive form of the disease, but it can be treated with Herceptin (chemical name: trastuzumab), a medication that targets HER2. Most BRCA1- and BRCA2-related cancers cannot be treated with Herceptin because they are HER2-negative________________
_____________________________________
thats all well and good but if you were positive brca 1 - 2, then you could take hormone meds, so is it so good being negative brca 1 -2?? yes for family history but not for treatment?
what do you think?
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Hi Peggy, I'm just starting this journey. In a perfect world I would be sitting in a chemo chair instead of at home right now. I had 2 tumors and 2 chips installed after my biopsy. When I had surgery they think they got the tumors but one chip is missing so this has to be resolved before chemo. They want to do a mammogram soon and this is the delay. I have a hematoma that it 25% of my breast, and tho I want to cooperate fully since they are all about saving my life, to this I've had to say no. This morning my husband has gone to pick up films of exactly where the chips were right after the biopsy and we see the oncologist tomorrow to ask about ultrasound or CT scan. We think this is just disturbing. If I do not have to have another operation (depends on if the chip is there, has it moved or is it in the original spot which means surgery again) then chemo is due to start on 3-6, tho next week we are seeing an oncologist who runs a private chemo situation and who comes highly recommended. And we think speaks English. I speak German but this vocabulary, probably not. We are also going to get a 2nd opinion on a bit of everything at the local univeristy hospital that is thought of around here as maybe a bit more cutting edge. Chemo hopefully will start in a couple of weeks in the best situation. We think that the system here is probably just as advanced as in America but the navigation is not anywhere near the same and is really a problem. We've already had to go to my GP for help in this area. No doctor has said a word to me yet about diet but I do have a lot of friends with cancer experience so they are helping with food. If you want to point me towards anything I'm open to suggestion. I eat plant based + fish and figure I'll lower my standards and eat chicken during chemo if there are protein issues and maybe I want to limit dairy? I do not know really....I have a German friend here who just finished my exact chemo and she said she ate pretty normally. I drink zero so that glass of wine is no issue...I read maybe this is best for TN anyway.
Where are you in your treatment? I used to live in Virginina, went to college at ODU!
What I am really wondering lately about from the TN's on here, are mastectomies being offered up as a possible preventive solution to recurrance? Culturally this might not be done here, but I wonder if this might be a smart thing to do whether a German doctor likes it or not? I'm 57 and tho it is of course not a nice thought I'm also not so attached to my breasts..it would not be such a big sacrifice considering the alternatives, one of which I do not like the thought of is going through all this over and over.
Thanks for any and all help! I'm off and on still at total basket case stage!
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Hello Liv.
I was glad to know that you had got your genetic test results and if that were me I would consider it excellent news that you do not have the faulty genes BRCA1 or BRCA2. These genes apparently put you in a higher risk group for breast cancer and to develop it at a younger age.
I was told when diagnosed that it was better to be HER2- than HER2+ and that HER2+ is very aggressive even though they now have Herceptin to treat it. My understanding is that Herceptin affects the heart.
I have read that you can be BRCA1 or BRCA2 for either receptor status. That is, you can be TNBC and have the faulty genes, but also triple positive or anything in between.
You might like to check, but I do not think that, because you are BRCA1 or 2 positive that you would get hormonal treatment. Being BRCA1 or 2 positive is all to do with damaged genes and not hormonal.
It is not always a good thing to be on medication such as tamoxifen or aromatase inhibitors such as Aromasin (exemestane) or Arimidex (anastrozole), which are used for hormonal breast cancer. They all have nasty side effects and do not always work. I know of women who have been classed as tamoxifen failures because the drug has not worked for them. I have also read that if you stay on tamoxifen long enough apparently you can develop TNBC.
As far as I am concerned, I am glad that I am not taking any drugs and am letting my immune system work for me and fighting my own corner to stay healthy. I stress, this is my own personal opinion.
Here are some links that you might find useful.
http://en.wikipedia.org/wiki/Anastrozole
http://en.wikipedia.org/wiki/Exemestane
http://en.wikipedia.org/wiki/Tamoxifen
http://ghr.nlm.nih.gov/gene/BRCA1
I was reading up about inflammatory breast cancer and found the following link which I think gives a straight forward account of breast cancer treatment in general in very clear terms and I thought it would be useful, not only for inflammatory breast cancer but breast cancer in general. The link is:
Love.
Sylvia xxxx
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hello sylvia ((hugs))
thx for that information, so overall a good outcome. was thinking that i may have been able to take tamoxifen or some hormone meds if it came back positive.
as you stated there are lots of side effects with those meds so i should be pleased with my results.
just remembered my onc saying that we needed the results of genetic test so that we would know what trials are compatible with my bc type.
thanks again sylvia.
xx
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Hello Liv.
Thank you for your post. Please be happy that you do not have those faulty genes. Keep your positive attitude and your lovely, lively character. I understand that you will have off days. With this disease that is understandable. I do hope that some day in the not too distant future that this disease will be prevented and if not, that cure or remission can be brought about without chemotherapy or radiotherapy that do so much damage. It would be nice, also, to make surgery redundant. I did read on the WDDTY website that more targeted therapies with PARP inhibitors are in use.
Do you read this website? I did read there also about people unnecessarily having double mastectomies (medical term bi-laterals) and about mammograms not being that effective. Sometimes you do not know what to think.
I saw on another thread that you were discussing the birth control pill and breast cancer. We have had discussions about this on the thread before and I tend to think there is some connection. There is definitely a connection between HRT and breast cancer. These are all unnatural processes. We read a lot about a higher risk of breast cancer in women who have not had children or who have had their first child quite late in life. Just because you end up with TNBC as your receptor status, does not mean that it started off like that. Apparently cancer cells are forever mutating.
You are young, Liv, so enjoy your life and enjoy your lovely sunshine.
Thinking of you and wishing you well.
Love.
Sylvia xxxx
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