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Calling all triple negative breast cancer patients in the UK

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello Everyone

    I just wanted to wish all our TNBC USA friends a happy July 4th. I also wanted to wish our Canadian TNBC friends a belated happy Canada Day July 1st. Those of you who have posted from those two countries have made an important contribution to this thread.

    A special hello to Gillyone, Brenna, Tonya/Chilimac, Suze35, BKJ66, Christina1961, Britchick, Suelynn, Eskimo53, and Luah in Canada. Also special hellos to NewAlex in Switzerland, ElaineD, Alif, PenelopeP and any others I may have forgotten in the UK and elsewhere.

    We are all in this TNBC together.

    Best wishes

    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello bkj66


    I am so glad that you enjoy our thread and you are very welcome here. Thank you for letting us know about your treatment. I do hope you do not suffer side effects from the neulasta and neupogen, in addition to the probable side effects of your chemotherapy drugs.

    I can understand that you can be struggling to eat well while you are on chemotherapy, but just do your best. You will probably enjoy plain food rather than rich food, and food that does not require too much effort to prepare. I eat my food in the simplest way possible. For breakfast I have wholemeal (whole wheat) toast with nut butter, later some muesli with calcium enriched soya milk and organic fresh fruit, such as bananas, blueberries, raspberries, strawberries or blackberries. I also have a glass of fresh soy milk and take a calcium supplement, two vitamin D supplements and a magnesium supplement. During the day I drink as many mugs of decaffeinated green tea as I can. Green tea is supposed to be a potent anti-cancer fighter. I shall do the meals I have in stages, so that I can cover things in more detail. I have been drinking this green tea for over six years now.

    I would welcome information about healthy breakfasts from other people on this thread.

    Your oncologist is right about keeping your protein intake up, but my personal preference would not be for meat or dairy products.

    I hope you are enjoying Independence Day.

    Hello Maria_Malta and BernieEllen.

    Maria, I am glad you enjoyed your bowl of mashed potatoes! They are easy to eat and make you feel full.

    Thank you BernieEllen for your appreciation of the information on the thread. I can understand your eating what your body tells you it needs. You do have to get some enjoyment from your food, especially when you are going through treatment for breast cancer. I would think that mashed potatoes in soup would be ideal.

    I hope you are coping with the line. I am sure there must be patients who worked while dealing with this. Just be vigilant about what you are doing. I like to garden, but did not do much during treatment. Even now I am very careful about not getting cut or scratched, especially on the right arm, since my mastectomy was of the right breast. I am also vigilant about my right arm where I had seven lymph nodes removed (only one affected, the sentinel node), and am careful not to overdo things, but I do sweep or rake up leaves.

    I do hope you and your husband are doing well. Has he had any luck with finding new employment?

    Best wishes
    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello TEK2009 (Tessa)

    I have been having special thoughts about you and wondering how everything is, because I know you were having a stressful time. How are you getting on with your treatment? Did you ever get a diagnosis of inflammatory breast cancer? We would all love to hear from you.

    Hello chilimac (Tonya)

    I do hope things are not too bad with you. How are your two sisters getting on?

    Best wishes

    Sylvia

  • Maria_Malta
    Maria_Malta Member Posts: 667
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    Taxotere last Friday, and achiness and leaden stomach not as bad as last time, but exhaustion overwhelming...There doesn't appear to be any pattern, and one treatment is very often different to another... I move from bed to settee to armchair, read, doze, go out into the yard to dead-head a few flowers, feed the cats, back to settee and so on in a merry-ground many of you are familiar with I'm sure... and still nothing tastes good!!!

  • mccrimmon324
    mccrimmon324 Member Posts: 794
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    Maria Malta - I just had my treatment on Thursday, its Taxotere, A/C - I'm glad to hear you say one treatment is often different than the others.  This was my second treatment and it didn't seem as bad but "different"  Trying to work a 1/2 day and really don't think I'm going to manage that.  I'm exhausted and I did nothing but lay in bed all weekend.  The bad taste is horrible, I don't know what to do to help with that but it's driving my crazy!!!  Hope your feeling better today!

  • Maria_Malta
    Maria_Malta Member Posts: 667
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    Yes I know mccrimmon324, the bad taste is SO FOUL and nothing tastes even bearly acceptable let alone good...... I find that there is nothing I enjoy to drink either, water, herbal teas, soft drinks, etc  seem to line my tongue and palate with bitterness... Mashed potatoes went down reasonably well a couple of nights ago, but bad taste hadn't accumulated yet so not sure whether to try them again today...

    SUGGESTIONS GRATEFULLY ACCEPTED! Tongue out

  • TEK2009
    TEK2009 Member Posts: 33
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    BKJ66/ Maria Malta

    Hi re the eating I am afraid to say I followed what they told me and after every chemo used to eat like a horse for a few days, I could only face really fatty unhealthy foods and although it made me put weight on I actually quite enjoyed it. The bad taste could only be reduced by eating sweets so I did. While it took me a bit of time to lose the weight post chemo I did eventually with the help of a Wii Fit Plus and some unecessary stress from some unpleasant builders.

    Some will tell you diet is really important and everyone is different but I used to eat pretty healthily and it did not prevent me from getting TNBC, after the chemo I got back to a healthier eating regime and the cancer still came back so personally I do not put so much store in the healthy eating other than everything in moderation. But while on chemo eat as you please and eat what makes you feel good, or just what you can face. I guess it might be likened to the cravings you get when pregnant (not that I have ever been pregnant but from what I have heard).

     Really good luck with it.

  • TEK2009
    TEK2009 Member Posts: 33
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    Sylvia

    Afraid they took me off the Xeloda after just one round. Now what? Really do not know have been exploring options of trials etc but even those sound bad ie low chance of working versus increased time in hospital and feeling terrible. Great dilemma huh!

    Meantime am on nothing and the pain has increased and am getting more tired and it is almost certainly in my right lung although when they were telling me about my scan a few weeks ago they skipped that bit.

    All the best

    T

  • Maria_Malta
    Maria_Malta Member Posts: 667
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    TEK2009 thanks for your sensible advice..I too had a healthy diet and kept fit before BC....I'm thinking of you at this tough time...

    Hard to say 'welcome' to jenn-uk, but in fact you'll get a lot of help here as there is bound to be someone who is undergoing a similar experience to yours...This forum really helps, especially on the days when I'm housebound after chemo.

    Woke up better this morning, not quite so crushingly tired, and disgusting taste appears to have receded a bit.. Last night a friend brought round some lemon granita and it tasted reasonable, almost good in fact...take note Mccrimmon324!!

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello Maria_Malta


    I was sorry to hear that the Taxotere (docetaxel) is having such a bad effect on you. You will hopefully start to feel better after the first week and then feel slowly better until the next treatment. None of us can really say how others will feel. It is all very individual and personal. I would think it is difficult to work and go through this treatment. Someone I know, who was diagnosed with hormonal BC and had just a lumpectomy and radiotherapy, was put on five months sick leave from her work in the public service, and yet others having chemotherapy as part of their treatment were not. Moreover, some get benefits (not means tested ones) and others do not. I feel that once again you need to be informed and that it is a good idea to have the service of the Hospice Care nurses working with your GP, who can take care of all of this for you. These nurses will come once a week, or more if you want, to talk and keep you company, advise and get any service that you might want or need. I had them from diagnosis to end of treatment and found them invaluable.

    Maria, sleep as much as you like and do not worry. As for the taste, it is something all of us on treatment have to put up with, but it does pass. Just eat what you can and what you feel like.

    Hello mccrimmon324.

    Welcome to our thread. I am sorry that you have to be here, but we shall give you all the support we can. I am not sure whether you are having your chemotherapy treatment before or after surgery. Are you having a combination of Taxotere (docetaxel) and Adriamycin (doxorubicin) and cyclophosphamide, or are you having the Taxotere first?

    Try not to worry about the exhaustion. It is probably the most common side effect of chemotherapy, along with hair loss. If you find work too much it is probably prudent to stop if you can. You need rest to strengthen your immune system and enable it to fight. I cannot advise about financial help if you need it, as I do not know the US system. I do know that in the UK the state does provide financial help, non-means tested.

    As for the bad taste, there is not much you can do. Mint tea, peppermints, boiled sweets, refreshing drinks might help. I did notice that, in the chemotherapy ward, where I had my treatment, there was always a table with some fruit sweets (candies) on it.

    Keep looking forward and bear in mind that I have recently read that the taxanes (Taxotere and Taxol) are the most powerful anti-breast cancer drugs that we have. I have also read two different things about Taxotere. One states that Taxotere has more side effects than Taxol (paclitaxel), and the other states that Taxol has more side effects than Taxotere! As I have said before, we are all different, and we do not know how we are going to react.

    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello jenn-uk.


    A very warm welcome to our thread. We are all sorry that you have to be here, but you can count on us to help and support you all we can. Since you were diagnosed so recently on June 23rd and you are soon to begin chemotherapy, I am assuming that you are having what is termed neo-adjuvant chemotherapy, which means you are having it before surgery. From all of us here I would like to send you our best wishes as you start on this journey.

    If you are like the rest of us, you are probably in shock at the moment, as the diagnosis sinks in. Please remember that chemotherapy is challenging, but it can be done, and you will be fine. Let us know what chemotherapy drugs your oncologist decides to use. Please do not hesitate to post for support, advice and information.

    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello TEK2009


    I was so glad to find you posting again, as I have been wondering how you are. I can understand how you feel a bit dubious about breast cancer and diet. Like you, I took great care of myself and ate very healthily all my life and I still ended up with breast cancer and, in addition, TNBC! I just feel that there are many other factors causing BC and anyone can get it. I still believe, though, that the modern diet of convenience food and fast food is not helping.

    I do agree with you that you have to eat as you feel you can during chemotherapy. We are all different. I was particularly affected by smells and did not like the smell of cooking or perfumes etc. When my brother came to visit his cologne or aftershave made me feel very unwell, as did the smell from the red wine that he used to like to drink!!!!

    What I have believed for a long time is that meat and dairy products are not good for you, because of the growth hormones and I do not eat them and never shall.

    I was sorry to know that you have been taken off Xeloda (capecitabine) and was wondering why. Were you having bad side effects? Has anything else been suggested? What kind of trials have you been thinking about or been offered? When you say spending increased time in hospital, do you mean that you would have to be admitted?

    What is happening about your rash? Did you find my post on the thread where you were asking for information about the rash? I posted some information from a medical book of mine.

    Have you looked at the thread by the moderators about metastatic breast cancer? It is very clear to understand. Did you ever get a diagnosis about inflammatory breast cancer? The moderators are very encouraging about mets and make it clear that there are plenty of treatments available. Some of the drugs mentioned are Taxotere (docetaxel), Taxol (paclitaxel), Abraxane (albumin-bound paclitaxel), Adriamycin or Doxil (doxorubicin), Xeloda (capecitabine), Navelbine (vinorelbine), Gemzar (gemcitabin).

    On the Moderators' thread there are details about the different responses to the different drugs. For example, more women have their cancers shrink or disappear on Taxotere, Taxol or Abraxane than when taking Adriamycin. Apparently, Taxotere, Taxol and Abraxane cause less nausea, vomiting and moth sore than Adriamycin. However, for some women Adriamycin was more effective.

    There are a lot more details on this thread, so please look them up under breastcancer.org Chemotherapy Treatment Options, Treatments for Metastatic Cancer, Recurrent and Metastatic Breast cancer.

    Another piece of information is that Taxotere or Taxol given in low doses weekly is very effective and has fewer side effects than when given three-weekly.

    Abraxane given weekly is very effective and does not require pre-treatment with steroids.

    Navelbine and Gemzar are also effective in keeping tumours under control and cause less hair loss.

    I do feel for you Tessa and just hope that the right treatment can be found to help you and keep pain at bay. Do you feel that your team is giving you the best treatment and advice? This is so important for you and you do not need to be messed about.

    I forgot to mention the drug Ixempra (ixabepilone). This is used to treat cancers that are resistant to Taxotere, Taxol, Abraxane, Xeloda and anthracyclines (doxorubicin and epirubicin).

    Keep your spirits up, Tessa and keep in close touch with us for support.

    Sylvia.

  • mccrimmon324
    mccrimmon324 Member Posts: 794
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    Thank you Sylvia, I've actually been reading your posts for quite a while now just have never posted.  I've already had a lumpectomy, I don't put my stats at the bottom yet because I'm just not ready to see them.  I am TN, 3cm tumor no node involement and my oncologist has me on TAC which is Taxatere + A/C all at once.  He assures me that this is the most aggressive chemo choice (in my case).  Woke up this morning and the bad taste is still there but not quite as bad.  This was my 2nd treatment.  Dr. told me it would be worse but I think it was better, only because this time I didn't start off with all the stress of not knowing and a terrible headache that stayed with me for days my first time.  Also, I  purposely slept as much as possible this time.  I really like to read your posts and I love that you still research and help everyone out who is just beginning this horrible journey.

    Take care everyone.

  • TEK2009
    TEK2009 Member Posts: 33
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    Sylvia thanks

    Sylvia et al Anyone know about Carboplatin side effects and not the ones they say ones you've had?

    Unfortunately having tried so many chemos they are not confident on certain ones also could not tolerate Taxol thats out. Only one left at this stage appears to be Carboplatin.

  • Suze35
    Suze35 Member Posts: 559
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    Tek - popping in real quick because I had Carboplatin. The side effects were very manageable for me, mostly fatigue and low WBCs. Of course, everyone is different, but Carbo is showing a lot of promise for TNs, and you won't lose your hair! Best of luck!



    Sylvia, thank you for your thoughts on July 4th. I am starting my chemo on Monday, so I'll be heading into lurk mode, but I will keep reading - this is a great thread and I appreciate all of your hard work and research!

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello mccrimmon 234

    Thank you for your post and for your details. At least your surgery is now behind you.

    You are having the same three chemotherapy drugs as I had, but I had three months of epirubicin and cyclophosphamide and then three months of Taxotere on its own (Adriamycin = doxorubicin, the same group as epirubicin). Are you having these drugs every three weeks or are you having lower doses once a week? I would imagine that all three drugs together every three weeks would really knock a person out.

    As for the bad taste, apparently spicy or strong tasting food is easier to eat than bland food. I do remember putting quite a lot of the spice turmeric into vegetable soups when going through chemotherapy.

    Apparently the side effects of chemotherapy drugs tend to get worse as the treatment progresses, but I found it kept much the same.

    You are doing the right thing by getting plenty of sleep.

    I am glad you enjoy the thread.

    Hello TEK2009.

    I have been looking up about Carboplatin and think you will find the following reference very useful. Reading it through there seems to be quite a lot of side effects, but you have to remember that we are all different. Have a look at the information and let us know what you think. Is this the drug that your own oncologist is recommending?

    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Carboplatin.aspx

    As Suze35 said, she found the side effects very manageable. Low white blood cell counts seem to be quite common with chemotherapy drugs, but we know there are drugs like Neulasta and Neupogen to bring up the count. Suze35 has said that Carboplatin is showing a lot of promise for TNs, so that sounds encouraging. I shall do some more research tomorrow when I have more time.

    Hello Suze35.

    Thank you for your post and in particular for your support of TEK2009. It is so useful when we have information directly from someone that has experienced a particular drug or side effect.

    I was interested to see from your profile that you had Taxol (paclitaxel) with Carboplatin. I am wondering whether TEK2009 will get Carboplatin on its own or something else, since Taxol is out. Again, it is the unknown factor of how different people will react to different drugs. I have read of a combination of Carboplatin and Taxotere (docetaxel) but this was with Herceptin for HER2+ patients. I am sure there must be a ripe combination for our dear Tessa.

    The pair of you have been through so much. I wish you the very best of luck for your treatment on July 11th. Please let us know how you get on.

    To everyone else, all the very best on this turmoil of a journey, especially the chemotherapy one. Keep posting about your experiences and offering any information you have. As a certain supermarket in the UK is fond of saying, "every little helps"!

    By the way, the brand name for epirubicin is Ellence. This is useful to know because, when I was going through treatment, drugs were sometimes referred to by their brand name and sometimes by their chemical name. This can be very confusing.

    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello TEK2009


    I have found a bit more information about the group of chemotherapy drugs known as heavy metals or platins. The particular one mentioned is cisplatin, the brand name of which is Platinol. It belongs to the same group as carboplatin (brand name Paraplatin) and oxaliplatin. Investigations about platins showed that platinum (a heavy metal) inhibited cell division in a powerful way and was an excellent anti-cancer drug. Apparently, it is very effective and can be used in high doses with moderate toxicity.

    According to my Merck medical book, these platins seem to have some of the same side effects as the group of chemotherapy drugs to which cyclophosphamide (brand name Cytoxan) belongs. For example they suppress the immune system and the bone marrow. I am a bit confused about what happens with hair. Merck states that carboplatin causes hair loss. If I were you, and your oncologist is suggesting carboplatin, I would ask for a complete list of all the possible side effects. I would also ask whether you would have carboplatin alone or in combination with other chemotherapy drugs. You mighr find the following link informative.

    http://www.chemocare.com/bio/carboplatin.asp

    I hope this helps.

    Hello Everyone

    Since we got on to the topic of food and nutrition in some posts, I thought I would post a list of what are said to be anti-cancer foods. I found this in a book entitled "Anti cancer a new way of life" by Dr David Servan-Schreiber. Recommended foods:-

    Green tea.

    Olives and olive oil.

    Turmeric and curry.

    Ginger.

    Cruciform vegetables. (Brussels sprouts, cabbage, cauliflower, broccoli and bok choi)

    Garlic, onions, leeks, shallots, chives.

    Vegetables and fruit rich in carotenoids. (carrots, yams, sweet potatoes, squash, pumpkin, tomatoes, persimmons, apricots, beetroot and all the bright coloured fruit and vegetables)

    Tomatoes and tomato sauce.

    Soy. (There is a piece of advice stating not to eat soy based foods during chemotherapy with Taxol, because, apparently, the genistein in soy can interfere with Taxol. Stop several days before and start several days after treatment. Confirmation of this interaction from human studies is awaited.)

    Mushrooms.

    Herbs and spices.

    Seaweed.

    Berries.

    Plums, peaches and nectarines.

    Citrus fruit.

    Pomegranate juice.

    Red wine - rich in resveratrol. (I do not drink any alcohol and get my resveratrol from black and red grapes)

    Dark chocolate. (More than 70% cocoa) (I buy 90% cocoa)

    Vitamin D.

    Omega 3. (Oily fish and flaxseed)

    Probiotics. (I eat soy yoghurt).

    Foods rich in selenium. (I eat Brazil nuts and some seafood for this)

    I hope you find this useful. The book is very interesting and gives details of how these foods help to fight cancer by stopping angiogenesis or bringing about apoptosis (the death of cancer cells).

    Do any of you read books about breast cancer, nutrition etc.?

    Sylvia.

  • mccrimmon324
    mccrimmon324 Member Posts: 794
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    Sylvia,

    The book you just mentioned was the first book I purchased after diagnosis.  Since I'm only on my 2nd treatment I haven't really read it too much.  I have it in my head that I don't want to be too good and interfere with the chemo's job.  If it's supposed to work on fast acting cells I don't want to slow any cancer cells down.  I have however changed my diet completely since dx.  I've pretty much given up any processed sugar, white breads, white potatoes, sweets, candies....  Now, I eat fruits as a treat and my husband and I love to eat fresh salads and steamed veggies.  I've also increased beans.  Kidney, black beans, pinto, lentils...  I managed to lose 25 lbs from dx to start of chemo, unfortunately I think I've been eating more during chemo and have to watch, I'd hate to gain it back and have to start over.  I'll have to check another thread, there was a good book recommened for getting back to normal after treatments, I think its another one I'm going to buy, I'll post it when I find it. 

    Thanks.

  • Maria_Malta
    Maria_Malta Member Posts: 667
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    Hi all,

    Thanks for ref to Dr D S-S's book,,,will check it out.  Speaking of diet, I've just ordered 'The Cancer Fighting Kitchen' by Rebecca Katz, which was referred to by a couple of people on other threads..It should arrive soon and I'll let you know what it's like once it gets here..

    There seem to be a number of theories regarding 'anti-cancer' foods, as well as foods such as sugar which apparently encourage the growth of cancer cells.... haven't had time to check it all out, but wonder about the sugar in fruit...doesn't fructose count as sugar?

    For a week after chemo my diet is very erratic and I eat all sorts of rubbish; into the second week I start to be good again.. today I managed to do a gentle yoga session (without total collapse), ate muesli & banana for breakfast (and experienced a light banana flavour in my mouth, hurrah) and am going out in a minute (is there a world outside my house???!!!)...that's PROGRESS

  • mccrimmon324
    mccrimmon324 Member Posts: 794
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    Maria, I think my tastebuds are returning nicely today.  Just had some oatmeal and rasins.  When I was first diagnosed I over googled on the PC and I ran across some articles that said TN's should stick to a low glycemic diet, the sugars in fruits don't process as quickly as refined sugar so they are better to eat.  I wish I wasn't so frantic and saved a couple of the websites I had found.  My husband bought me an eliptical machine for the house to do during chemo but I had problems with my incision closing and it's still going to be a couple of weeks before I can use it.  It's frustrating, I miss the little bit of excercise I was getting prior to surgery. 

  • josephine_
    josephine_ Member Posts: 41
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    Dear Tek

    So sorry that you have been taken off your latest chemo.........what next you ask?  tough question .  I guess they have to balance response (and in your case any reponse?) with side effects; and once you are chemo second time around and more it has no relationship to how well you did 1st time nor the side effects.

    Sylvia,  good to see that you are keeping the thread going.  I am currently on a chemo holiday to give my BM a chance to recuperate although the mets in the lung have dimished.  That said my second brain MRI this week showed two new mets (one tiny; one small)  which I had zapped by gamma knife today.  Although the tiny lesion was in the cortex controlling right eye vision (and I had some problem with this over the 10 days or so) the surgeon said it would need to be x20 times larger to cause physical symptoms.  Either he is correct, and/or I have a 6th sense!!  more and more I think the latter (as does my oncologist)

    bye for now

    J

  • TEK2009
    TEK2009 Member Posts: 33
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    Suze

    Thank you so much I am still nervous about the hair, especially as the listed common side effects included that. Nevertheless it is good to see that you did not. I guess it means there is hope.

    Sylvia

    I have read about the side effects but the Drs maintain that it is better supported than other chemos we will see if that really is the case.

  • bak94
    bak94 Member Posts: 652
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    Thanks for the food list, I will look into getting that book. For now, while on chemo I just try to eat healthy, but it seems I am craving sugar and have fallen off the wagon quite a few times. I have lost about 30 pounds since diagnosis, and want to keep it off and lose more. If I am to have diep reconstruction, I was told I need to lose another 20 pounds, with that I will still be about 45 pounds overweight so I really need to work on it. I do like to walk and exercise, but I have had too much fatique to do much more than a short walk.

    My next chemo after ac is abraxane/carbo, so thank you for posting the side effects of carbo. I was hoping my hair would start to grow back, but I am sure it will not with being on abraxane!

  • debbyanzalone
    debbyanzalone Member Posts: 6
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    hi there

    im new to this site, i had triple neg breast cancer o tct2009, my tumor at the beginning was 3cm no lymph glands affected, i have 3 fec and 3 taxotare and a possible lumpectomy but when they did a mamogram after chemo number 3 it hadnt shrunk so they advised a mascetomy and take all the lymph nodes out, after surgery they said the tumor was 8cm no lymph nodes involved, i had 15 radiotheraphy sessions, i am due for my yearly checkup and they tell me i will have no mamogram just a physical, also i wanted a mri scan after everything was done and they wouldnt give me on, i have found it nearly impossible to live with as im terrified im going to get it back, i was affected badly with the chemo, having to go into hospital with the wbc count and it was a terminal ward, everyone of those had had cancer come back , i am 46 with two young children who had to see me with no hair, ill and sick for 6 months and now have to face seeing me with one breast but somehow you manage to live your life but its hard when i know ive got to try to stay cancer free for another 30 odd years

  • chilimac
    chilimac Member Posts: 7
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    Hello Sylvia and everyone,

    I'm glad to see that this thread has really picked up!  There's so much important information here and the support is wonderful.  

    I'm sorry I haven't posted in a while.  Things have been a little hectic, but I wanted to give an update. My sisters are doing well.  My sister Natalie finished AC end of May and had her lumpectomy on 6/20.  The pathology came back as a complete response!!  We weren't sure if this was possible with her being a TN so it was a welcome surprise.  I know the next few years (from what I've read) are the really scary times, but I will continue to pray.  My prayers have gotten so long lately as I pray not only for my family, but for everyone affected by not just TNBC, but all forms of cancer.  My sis Karin (she had BC and now has lymphoma) has been in good spirits and we're all just holding onto hope for lots of miracles. 

  • josephine_
    josephine_ Member Posts: 41
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    Hi Debby

    You will get alot of support on this thread, and it must be a very scary time for you.  You mention that your yearly check up is due, and despite your history you are only having a physical examination but no mammogram nor a CT scan (I think this is what you might have not an MRI).  I would encourage you to talk this through with your oncologists, and the reasons behind their decision.  Does this mean you have not had any check ups in the last year?  I had regular check ups over the 12 months post chemo and radiotherapy (but not a mammogram, nor CT scan) until I had blood in my mucous.  My persistant cough turne out to be mets in the lung, although several X rays showed nought, and I did not have any enlarged lymph nodes etc...  There is a balance not to scan excessively, or even routinely, but if symptoms suggest then it should take place.  I do not know where you are being treated, but having a good relationship with your oncologist is very important, so that what merges is a dialogue where you absolutely understand the reasons why x, y and z are being done.  For what its worth, I had a rotine mammogram 6 months before I discovered ny lump in my breast and it was negative.  TN BC grow so quickly (as you know with your TN BC increasing from 3cm to 8cm)  so mammograms are not definitivie.  Good luck and look forward to hearing how you are doing.

    J

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello Maria_Malta


    I am sure we shall all be interested to know about the book The Cancer Fighting Kitchen.

    You are right about there being a lot of information on cancer-fighting foods. What we do about it is an individual choice. Although we all know that with cancer there are probably many different causes, each one adds up to a whole. Some of the alleged causes are out of our control, but, at least, to a certain extent, we can control our food intake. Apparently 35% of cancers are said to be caused by poor diet.

    I have read many times over about the connection between sugar and cancer and how sugar encourages the growth of cancer cells. Whether it has been scientifically proven I do not know. I do know that I steer clear of sugar as much as possible. The food industry puts it everywhere. I think this because, like salt, it acts as a preservative. If you keep away from processed and ready foods, you can eliminate a lot of sugar from your diet. As mccrimmon324 says, we need to stay away from simple carbohydrates, such as white rice, white flour, white bread and white pasta. All the starch from these products is quickly converted into sugar in the blood and sends our blood sugar level soaring. We need to eat whole grain rice, whole wheat flour and whole wheat pasta. When we eat these the process of starch being converted to sugar is much slower and keeps our blood sugar level more balanced.

    It is the same with fruit juices and sugary fruit drinks. They are too concentrated and many have added sugar, and they send our blood sugar levels soaring. It is fine to eat fruit as once again the conversion to sugar in the blood is much slower. We need fruit, especially all the berries, as they are rich in anti-oxidants and supposed to fight cancer.

    In fact, the anti-cancer diet is much the same as the anti-diabetic diet. It is a low glycemic diet.

    Keep looking forward to the end of your chemotherapy.

    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello mccrimmon324


    I get the impression that we are on the same wavelength with regard to nutrition. I was glad to know that you had given up on all the white foods that have been processed and had much of the nutrition taken out of them. I have read that eating raw foods is much better than eating cooked foods when it comes to fruit and vegetables. Apparently, essential and valuable enzymes are killed off in the cooking process. I too try to eat a lot of salad foods and include a lot of beetroot, avocados, radishes, peppers of all colours etc. I pressure-cook all my vegetables and I try to eat broccoli. I also eat a lot of the beans and pulses that you are on.

    I picked up on the fact that you said you had been eating more during chemotherapy. I was wondering whether that is a general thing. I found that I had a smaller appetite during chemotherapy and that my weight did not alter once I was diagnosed and started treatment. I did lose fourteen pounds in weight just before I was diagnosed and looked a bit thinner than usual. I have always been a tall slim person.

    Concentrate on getting through treatment. At least you have easy access to good fruit and vegetables in Florida. I remember when my husband and I lived in Canada, a Canadian friend who used to spend the winters in Florida, sent us citrus fruits. They were delicious.

    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello josephine_


    I was so glad to see that you are posting again. I was also very glad to know that the mets in the lung have diminished. I was sorry to know that there were two new mets in the brain, but really glad to know that the gamma knife had zapped them. I do sincerely hope that everything will be alright with your vision.

    I was glad to know that you and TEK2009 are supporting each other. It is very difficult for those of us that have not yet had to face metastatic BC to really know the challenge it represents. Do you think that with metastatic BC the oncologists end up trying all the drugs? I ask this because there are only a limited number of drugs. Is it alright to use chemotherapy drugs for metastatic BC if you have already had them for primary BC? This does seem to be the case.

    Keep as well as you can, Josephine and remember that you are in all of our thoughts.

    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,914
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    Hello TEK2009


    I was glad to see that you, Josephine and suze35 are all in contact. Good support is so vital. I do hope that all three of you will have good results from your treatments. I hope that more drugs will become available as research progresses, other than the six groups that are currently available. Since all of these drugs are so toxic, I still think the answer to defeating this awful disease is preventing it in the first place. I really believe in preventive treatment and medication.

    Good luck to all three of you from me and everyone else.

    Sylvia.