Calling all triple negative breast cancer patients in the UK
Comments
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Hello sam52
I agree with you. We are in a world that keeps changing things for no good reason. I do hope that bc.org will improve this new format or revert to the old one. If it is being changed for 25% of members with smartphones etc., what about the 75% of others?! At least the size of the font has already been enlarged. I hope they do something with the home page now. It does not seem to have all the details.
What do you think of this weather? I got soaked this morning ttrying to do some gardening.
I hope all is well.
Love Sylvia
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Hello BuddahWolf
I hope you managed to have a reasonable birthday and a good Bank Holiday, despite going through the anxiety of waiting to have a scan. I know you were due to have your scan yesterday, so I do hope you had good news.
Thinking of you.
Best wishes
Sylvia
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Hello Sylvia,
I have actually just had the (hopefully) last operation in the reconstruction process last Friday. I feel so much better just having the tissue expander out. And I just had the surgical,drain out today, much to my relief! I have had surgical treatment (lumpectomy, UMX, reconstruction) but didn't need any additional treatment, and my docs felt that in my case, because of the pathology and my age (38 now, 35 when I originally found the lump) the cancer didn't justify followup drugs such as tamoxifen etc.
I am down on the south coast near Portsmouth. We've had our fair share of rain here :-). I've decided to just embrace getting soaked regularly!
Nice to speak to you all. Enjoy your evening / day xxx0 -
Hi Sylvia and thank you for your advice...i fogot to come back here..my brain still is not good!
I did spend time looking everything up when i first knew...but not now..i dont ..i am with a group of chemo ladies who are wonderful..so supportive of each other...
Although my bloods are up..i have taken a week off chemo..as i felt too ill.the ONC forgot to give me a needle after the first chemo..so i will get it next time! She measured the tumour and its still the same..so now talking about 2 more chemo's if it hasn't shrunk...masectomy...
I am 65 with other problems ..i take Tambacor for the Atrial Fibrilation...oh by the way Sylvia..i do have a good sense of humour and i am firm friends with other ladies with cancer...friends for 'life'....
Thank you for taking the time to do personals for me! bless you..
Dulcie
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Hello Iz_and_Lys_Mum
Thank you for your post and for giving us some details about your treatment.I was glad to know that you have hopefully finished with the last operation with regard to reconstruction. I am sure you must feel much better.
You must have felt relieved not to have had radiotherapy and chemotherapy, as they both have bad side effects. You must also feel relieved that you do not have to take Tamoxifen, as it also has nasty side effects.
I do hope that you keep well and that this is all behind you.
I was interested to know that you are near Portsmouth. The amount of rain we have had recently is amazing but nature always seems to have a way of catching up. March was dry and mild, so April was bound to be wet and cold. It looks as though May will probably be the same as April.
Keep in touch with us. We have a nice group of women here, and I am very proud of them.
Best wishes
Sylvia0 -
Hello Dulcie
It was so nice to hear from you again. I know that you have a lot on your mind and you know that I will help you all I can.I was glad to know that you have stopped looking things up on the internet, as it can be frightening and confusing. All you need to do at the moment is to concentrate on getting through chemotherapy. I was so glad to know that you are with a group of chem ladies and that you are all supporting one another. When it comes to practical help this group will be of much more help than any information on the internet. Are you all on the same chemotherapy drugs? How are the others doing? What are the differences in how you are being affected? If they want to come on the thread they are very welcome. It is so useful to have direct information from women going through treatment.
I was sorry to hear that you are feeling so unwell that you are taking a week off from chemotherapy. The rest will do you good. Am I to understand that the needle that the ONC forgot to give you was a neulasta shot. I did not have them but I know they seem to be standard in the US. I would not think your tumour would have shrunk after one treatment. I thought the standard chemotherapy was about six months, one treatment every three weeks. I know some patients have treatment once a week.
What is it that you are suffering from the chemotherapy treatment? Are you suffering from sickness and nausea, upset stomach, fatigue? If you can explain how you are feeling I or someone on this thread might be able to help.
I was so glad to know that you have a good sense of humour. I think that is a great asset in life and will certainly help you to get through this cancer journey.
Do you think that the medication you are taking for atrial fibrillation may be helping to make chemotherapy treatment worse for you. Are you taking any other medication?
If you want to talk over any of your other problems, you will always find sympathy and support on this thread.
Good for you that you have firm friends with other ladies with cancer. They will indeed be friends for life.
I am sending you all my very best wishes and hoping you will soon feel up to continuing your treatment.
Sylvia0 -
Hi again Sylvia ..thank you for your reply ..yes i think the shot is the one you mention..to stop me dropping so low on the bloods..Neuts..they went to 02..
I take stuff for thyroid..digestive system ..but i have Fibromyalgia..osteopenia..osteoathritis..in spine feet etc...the Atrial Fibrillation..Spondilitis and Sciatica....i cant think of anything i may have missed and now Gall stones.....people expect to see a 'wreck of a woman' but not me! I keep on putting that make up on and red lipstick cos....i'm like 'Patsy' ...minus the blonde hair...shucks that was hard....( the hair going)
I am concerned though that chemo only is only 50/50 ..i didnt know that.. yes taking one day at a time..thats all i have the energy for right now...
I will stay around this thread..i dont always remember..my chemo 'fog' is bad..
Take care all you ladies..
Dulcie xxx
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Oh sorry the brain...the other ladies are on different types FEC mainly and TAX second and EC which i am on..quite a few of them are having bad side effects...and vein problems ...DVT.... all sorts...only a few seem to be sailing through...i am not sure what breast cancers they all have ..as they were well into their thread when i arrived...and sorry to say i havent felt well enough to go over their old posts...i cant even do personals to my regret!
Dulcie
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Hello Bernie Ellen,
I was glad to see that you have come to the rescue of that Irish lady ,Caroline, who seems in such distress. I know you will reassure her. If she wants to come and join our smaller,but strongly supportive group she is most welcome. I am sure linali will give her a lot of support and comfort.
I hope you are keeping well.
I feel so concerned that so many women are being diagnosed with breast cancer. When is this nightmare going to come to an end?
Warm thoughts are coming your way.
Sylvia.
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Thank you sylvia, I thought I should take a break but I was so wrong. We have become a family, support and understanding is always going to be needed.
Whatever contribution I can make I will.
Lots of love
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Hello Dulcie
Thank you for your posts. I do hope that the Neulasta shot will help with your next chemotherapy treatment and that you will not feel so awful. If I remember correctly, you have had just one chemotherapy treatment. For your next one, try to go in relaxed and just tell yourself that you will get through it. Drink loads of water after the treatment and take the pills that they give you for the first few days exactly as instructed. Make sure you get plenty of rest and do not try to push yourself. Remember as well to avoid crowds so that you do not pick up any infections.I was wondering what kind of thyroid problem you have. Is it under-active or over-active? You are fighting a lot of problems, so I am assuming you may be taking quite a lot of different medications and I just hope that all this has been taken into consideration.
I am glad you are taking good care of yourself as going through breast cancer treatment can make you feel unfeminine and lacking in confidence. It is true that losing your hair is very traumatic, but it will grow back and you can be very glamorous in a wig.
If I were you I would not worry about chemotherapy and this 50/50 business. Who told you that? TNBC apparently responds very well to chemotherapy and nobody really knows what will happen. Concentrate on yourself and your own breast cancer and do not compare yourself to others and their breast cancer. Everything is individual.
Try to lead as normal a life as possible and spoil yourself. You will get through this and your life will become normal again and breast cancer should go into a little corner of it.
Thank you for the information about the chemotherapy treatments of other ladies. FEC is quite common and one of the taxanes, either Taxotere (docetaxel) or Taxol (paclitaxel) are quite common as the second half of chemotherapy. EC is also standard and it is the one that I had for the first three months of treatment. I have been told that epirubicin (E) is supposed to be very harsh and it is sometimes called the red devil. Cyclophosphomide, I do not know too much about the side effects. During the first few months, when I was having EC, the only side effect I had was tiredness and of course I began to lose my hair after the first treatment. I had a lovely wig and soon got used to it. About the home and at night I had a lovely, elegant Simone de Beauvoir type turban.
There are often problems with veins and it becomes difficult to get blood for blood tests. I think it is very common now for oncologists to advise having a port installed, but ports can be the cause of infections as well.
I felt very concerned when I read that some of your friends are having DVT problems. What is being done to try to prevent it happening?
When you mentioned your friends in a group, I thought you meant physical friends in a support group and not online. I now think you must be in a thread dedicated to patients going through chemotherapy at the same time as you. I do hope you are getting support through a breast care nurse or other support groups through the hospital or elsewhere.
Wishing you well.
Sylvia0 -
Hello BernieEllen
I was so pleased to see your post. I agree with you that we have become like a family, and although we have finished treatment, there will always be people that need our help and support and I think we can all find a little time to lend a helping hand to those who need us, without becoming completely absorbed and letting breast cancer take over our lives.
Lots of love.
Sylvia0 -
Hello everyone
I just wanted to say that I am thinking of all of you, those going through treatment and those who have finished. I think a week ago some of you were experiencing cancer fatigue and I do understand the need to take time off. I hope you are all doing well.
To our American ladies, christina1961, bak94, mccrimmon324, LintRollerDerby and cupcakies, I do hope all is well with you. To bak94, I do hope that you are well and bearing up, as I know you have had a lot of problems.
To all my fellow Brits, Karen3, sam52, Karen_Sheffield (I think you started chemotherapy today so I hope all has gone well. Like bak94, you are doing this for the second time, so she will know what you are going through. Good luck.). To BuddhaWolf, please let us know how things went with your scan results. Best wishes to Iz_and_Lys_Mum and to Dulcie, just hang in there, you will get through this.
Finally, all the best to BernieEllen and linali, my Irish friends. I do hope, linali, that all is well with you. I know you have a lot to contend with.
To Maria_Malta, we shall always be glad to hear from you and your words of wisdom.
Warm wishes to all of you.
Sylvia0 -
Hi Sylvia ..i dont seem to be coming back up in my energy levels at all! I get up in the mornings as tired as when i went to bed...I do wonder if my medications have been taken into consideration..plus my age and weak constitution..always getting bugs before diagnosis...
My thyroid was over active.. then many years ago i had the radio active iodine and its now under...i am quite concerned about the Neulasta jab..it seems to come with another set of problems...i wonder if they could give me a slightly weaker version...?
I think i am just getting 'standard' treatment...and nothing being taken into consideration...
I was offered trials...but straightaway the ONC said it can affect the heart...but so can TAX ...the next lot of chemo...this Metaplastic seems to grow like a tomato in a hot greenhouse...no stopping it!
I am sorry this is a Me Me post..i really am ..
Take care
Dulcie xx
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Hello Dulcie,
Thank you for your post. Once again I am so sorry to hear that you are having so much trouble.
I do think that your general state of health, must count for something when you are going through chemotherapy. Perhaps you should talk it over with your oncologist and your GP. You should make sure that your medication for other problems is not affecting how you are reacting to treatment.
I had never been ill in my life before the diagnosis of TNBC and I seemed to have sailed through all my treatment with few problems.
I did take great care of myself and cannot say that I felt ill. I do not think I could have worked through treatment, but I know a lot of women do.
Hang in there and take care.
Best wishes,
Sylvia.
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Hello again Sylvia ..i read that you sailed through your treatment which was wonderful for you!
My friends and i on our forum have all suffered all kinds of SE's some really bad ones..and quite a few of us have been hospitalized...it appears to be quite normal as we are nearly all have got problems...there seems to be only a couple that have done really well...and not had many SE's...
I wondered what the difference between Neulasta and a daily jab of Filgrastim..is? Some of the ladies are having one or the other....Have you had any experience of these please?
All the best
Dulcie xxx
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Hi Sylvia
just noticed that another irish woman Caroline has joined and I hope that she will find it a support and a source of information as there doesnt seem to be many TNBC in Ireland.
I am coming to England on Tuesday to the bra fitting course at Royce and then I will be available to help other women at my support centre.
The time to adjust course that I did is finishing next Friday and I found it useful because we are all finished treatment and coping with "survival" and experiencing the same fears and difficulties in connecting with our "old lives". I was relieved to hear that other people suffer from sleeplessness and extreme fatique also 2 years down the road.
The biopsy I had was on my "cancer breast" on a skin eruption all over the breast. It has been painful and itchy for a long time but it is ok it is radio dermatitis. I havent been given a treatment yet as there isnt that much apart from aqueous cream that the dermatologist has suggested . Has anyone else experienced this?
At the centre we are trying to provide more helpful tips and advice to people about their treatment and side effects. I wonder has any one experienced increased facial hair growth either as a result of steroids or when their hair returns after chemo and any tips on how to reduce it? I know that my own is stronger and beauticians are reluctant to advice on a product.
Only 3 weeks to the mini marathon and havent got back to training, I think that someone will have to push me in a wheelbarrow.
I hope the weather forecast in England is good for next week and that the wind dies down before I have to get on the plane!
Thinking of you all
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Hello Dulcie
Thank you for your post. I know that chemotherapy is proving very difficult for you and your group of friends and I do sympathise. I just want to give you encouragement. As bad as it may seem, you can get through this and you will get through this.There is a group of ladies on this thread that posted on the thread when they first began treatment and together we went through all the ups and downs, until finally they could say they had finished treatment. I am thinking of three fine American ladies, christina1961, bak94, and mccrimmon324. All three will tell you that chemotherapy is probably the hardest part, but it can be done. Two fine ladies, BernieEllen and Maria_Malta, will tell you the same. Chemotherapy is a long and tiring journey, but you can do it. You must keep telling yourself this.
It would be so useful if you and your friends could post a list of all the side effects that you are suffering, especially the really bad ones. We could then perhaps hear from others and how they coped with the side effects and offer tips.
I came to this forum in 2009, long after I had finished treatment in 2006. I discovered it through looking up information about breast cancer and hyperparathyroidism. It was in September 2010 that I decided to start this TNBC thread and to dedicate myself to it, because I wanted to help other women. I am sure I would have found it very useful and comforting to have had such a thread when I was going through treatment. That is what I want this thread to be, to offer information, tips and especially comfort, company and sympathy. I do not mind who posts here, whatever type of breast cancer you have.
You said in your post that there were only a couple of women in your group that seem to have done really well. It would be interesting to know why you think they have done well. Have they been doing anything different to the rest of you? What are they taking? Is it to do with their age? Is it to do with their state of health prior to treatment? Could it be to do with their character? Do they see the glass half full rather than half empty? We could have interesting discussions about all of this.
I do know that women do end up being hospitalised. I think this happens when they end up with problems with low white blood cell count or low red blood cell count. Do we know why this happens to some but not to others? During my own chemotherapy I used to decide a lot for myself what to do. I did not take any other orthodox medication than the drugs in my chemotherapy treatment and the few pills prescribed afterwards for a few days.
I did take oral Iscador for a long time to boost my immune system. I did this under the guidance of a consultant at the Royal Bristol Homoeopathic Hospital. She also prescribed other things to take at each stage of my treatment and I had no problems. I took simple things, such as iron tablets to keep my red blood cells up. I ate lots of figs and prunes to keep constipation at bay. I took ginger capsules, ginger and lemon tea, and fresh ginger brewed into a tea, canned pineapple in juice to keep my mouth fresh, and so on.
You asked about Neulasta. This is something that I was never offered when I was going through chemotherapy in 2005/6. I do not know whether it was being used in the UK at that time. I first learnt about it from the American ladies on the thread. I got the impression that it was standard practice in the US to give Neulasta shots. For those of you going through treatment in the UK, is it now common practice to offer Neulasta?
Neulasta is a brand name for pegrastim and this is a blood growth stimulant. There is also another brand name, Neupogen, which is a brand name for filgrastim, which is also a blood growth stimulant.
I do not know the difference between Neulasta (pegrastim) and Neupogen (filgrastim), but I shall certainly research it tomorrow. I think the most important factor is that they are both blood growth stimulants.
As far as filgrastim is concerned, it is a synthetic form of G-CSF(granulocyte-colony stimulating factor), a naturally occurring protein responsible for the manufacture of white blood cells which fight infection. Deficiency of G-CSF therefore increases the risk of infection. The drug works by stimulating bone marrow to produce white blood cells. It also causes bone marrow cells to move into the bloodstream, where they can be collected to replace bone marrow lost during intensive cancer treatment. Filgrastim is used on patients who have recently received high doses of chemotherapy or radiotherapy during cancer treatment, because these patients are prone to frequent and severe infections.
Unfortunately, bone pain is a common adverse effect, but it can be controlled using painkillers.
My information is that patients with rare blood disorders are at increased risk of severe illness from taking filgrastim.
The dose of this drug depends on body weight, condition being treated and response to treatment. It increases white blood cells in 24 hours and several weeks to get the number of these cells to normal.
Bone or muscle pain is a common side effect and rare side effects are difficulty in urination or pain, and a skin rash. My other information is that cytotoxic chemotherapy or radiotherapy should not be administered within 24 hours of taking filgrastim, because of an increased risk of more damage that these treatments inflict on the bone marrow.
You need to keep asking your oncologist questions about what you are being given.
Thinking of you. I shall post more tomorrow.
Best wishes
Sylvia0 -
Hello linali,
Thank you for your interesting post. I want to write a proper answer,but I have run out of time this evening. I shall make it a priority tomrrow. I was so glad to hear from you.
Best Wishes,
Sylvia.
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Hello Youngmommy
Thank you for your PM. Congratulations on having a good pathology report and a complete response. I hope this will encourage others on the thread who are having a bad time with treatment.
I hope all will go well with the radiotherapy.
Best wishes
Sylvia
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Hello linali
There is another Irish woman, Caroline, on the forum and I hope she will post on this thread, so that she can be with you and BernieEllen. If you have any other friends in Ireland in need of support, please tell them to post, since there does not seem to be much help and support in your country.I hope you enjoy your trip to England tomorrow. You are doing a worthwhile job. We all need to dedicate ourselves to helping others going through breast cancer. I am glad to know that you are going to be helping other people at your support centre. It is the kind thing to do. When a person has had support in their time of need, the least they can do is to give a bit of time to helping others. It does not mean that you cannot have a life apart from cancer. There is nothing more rewarding than helping those that need it.
It is my understanding that the side effects of our breast cancer treatment can go on for a long time. It probably takes years for our bodies to recover.
I was so glad to know that you had good news about the pain and itching on your "cancer breast". I am sure that the aqueous cream will help a lot. The problem was probably caused by dryness and the cream should definitely help.
Your group at the centre is definitely doing a good job. Let me know what kind of tips and information you come up with. I have not seen anyone mention facial hair growth as a result of steroids or when regrows after chemotherapy treatment. If anyone has had this problem, please let us know. Are you doing anything about your own hair growth on the face? It is strange how we react differently. I have had no hair growth under my arms since my treatment finished.
I hope all will go well with the mini-marathon. Do what you can and enjoy participating.
We had a really lovely day yesterday and I did a lot of gardening in the grounds. The weather is going to be changeable this coming week. I hope you have a calm day for take off tomorrow. Which airport are you going to land at?
I am sending you warm thoughts. You are doing good work.
Best wishes
Sylvia0 -
Hello Karen_Sheffield
I was just wondering how you are getting on since you had your first chemotherapy on May 10th. I hope all is well.Best wishes
Sylvia0 -
Hello Dulcie
I have been doing a bit of research about Neulasta. You might want to have a look at the following websites.Neulasta (pegfilgrastim): www.netdoctor.co.uk/cancer/medicines/neulast.html
I have also had a look at Before you start chemotherapy, learn about Neulasta pegfilgrastim.
www.neulasta.com/
I would be interested to know what you think. I certainly did not like the sound of some of the side effects.
Some snippets of information that I found are as follows:
Neulasta should be given 24 hours after your chemotherapy and should be given in this way after each chemotherapy session.
Pegfilgrastim is a "pegylated" form of filgrastim, which means it is attached to a substance called polyethylene glycol. This increases the length of time that the filgrastim works for.
Neutropenia is a low level of neutrophils in the blood. This leaves a person very susceptible to life-threatening infections.
Neutrophils, like all blood cells, are produced naturally by bone marrow.
It seems to me that both Neulasta and Neupogen are given to prevent neutropenia which is life-threatening and causes you to end up in hospital.
It looks as though Neulasta is more long lasting.
I think you should discuss all this with your oncologist.
If any of you have had Neulasta or Neupogen, it would be useful if you could post and let us know how you got on with these drugs.
To sam52, I seem to remember that you had neutropenia. How was it treated?
Best wishes
Sylvia0 -
Hello Sylvia
Yes, you are right - I did have neutropenia and ended up being admitted to hospital about 10 days after my first chemo (FEC). It appears my blood reached its 'nadir' a bit later than usual, so when I had my bloods checked after 7 days (I think...it was rather a long time ago) all seemed well. However, my neutrophils then did a nose dive and virtually disappeared.....I knew something was wrong when I began to feel very unwell and my temperature rose.
I began a course of neupogen (GCSF) in hospital, and it took 4 days of (daily )shots to bring my neutrophils back up again.I think each person has a very individual response to this, so it can take longer.After I was discharged from hospital, the district nurse came round to do the remaining shots, although I know some people do their own. I did get a very bad backache with the first injection, which the dummy junior doctor (it was a weekend, of course),told me was probably due to the hospital bed!!!! However, I subsequently found out that this is a typical side effect and shows that the bone marrow is starting to make white blood cells again. It only seemed to be the first shot which gave me this side effect.I got neupogen shots prophelactically after each dose of chemo.
After 4 lots of FEC I started Taxotere......I giot the neupogen injection on day 7 as I had been with the FEC.....but it was too late as my blood went down a lot earlier and I ended up in hospital again, this time with a really bad throat infection and high temperature.This time I was on intravenous antibiotics and also the GSCF injections. After this, I got the shots I thinbk on day 4 for the rest of the Taxotere. Really, the neupogen/GCSF was not a problem and probably saved my life, so it is nothingto be afraid of.
Hope this has been useful.
Best wishes,
Sam
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Hi guys
I'm a newbie, having been diagnosed with triple neg BC in Oct 2011. I had neo-adjuvant chemo with Taxotere x 3 first along with Avastin x 4 then FEC x 3.
My tumour was just under 3cms and no lymph node involvement.
I had bilateral mastectomy on 30 April (2 weeks ago today).
I'm trying to find out about recurrence rates, there is information on the net but it seems quite dated and, therefore, I'm not sure is relevant. I haven't been recommended to have radiotherapy but am wondering if it's something I should push to have in a belt and braces response to mop up anything that might have been left behind? Does anyone have experience of this?
I'm also keen to find out about foods to avoid and how I can maximise my chances to prevent any recurrence through diet??
Any information/ advice would be very much appreciated xxx
Thanks
Sharon :-)0 -
Hello to everyone, still trying to catch up with all the posts.
Hi Linali, I've seen Caroline on the TN forum, hopefully we cal keep in touch with each other.
I will be having my hips xrayed on the 24th - lots of pain. Had a clear bone scan last month. I also have a lot of pain in my breast and underarm.
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Hello sam52
Thank you for your very detailed and informative post. It will be of great help to other women having trouble with low white blood cells and having to go through extra treatment with Neulasta or Neupogen. It will show someone like Dulcie, and indeed her group of friends, that you can get through these injections and that you do recover from neutropenia. Your post is also helpful when it says that you began to feel unwell and your temperature rose. It is also useful to know that you had a bad backache with the first injection. I cannot believe that a junior doctor told you it was probably due to the hospital bed! I noticed you said this happened at the weekend. It just shows you that we all need to avoid being in hospital at the weekend. We do read horror tales about the dire consequences sometimes of being admitted to hospital at weekends. It is also a lesson for everyone not to treat doctors or consultants like gods. We have to take care of our own bodies, keep our ears and eyes ever on the alert about what is being said or done concerning our treatment. Keep asking questions.I was interested to learn that when you were on Taxotere (docetaxel) and got the injection on day 7, it was too late as your blood cell counts chose to go earlier. That incident in your treatment shows us that a bad throat infection is also another warning sign that something is wrong.
Thank you sam52 for your words of encouragement when you say the Neupogen/GCSF was not a problem and that one should not be afraid of it. I agree with you that it probably saved your life. It made me wonder how long Neupogen and Neulasta have been around. I did not hear anyone mention it when I was going through treatment.
Reading your post reminded me that you had FEC (fluorouracil, epirubicin, cyclophosphomide), while I had just EC. Does anyone have any ideas why I did not have fluorouracil. I know that FEC treatment is very common.
I also wonder why some women have these problems with low white and red blood cells, while others do not.
I do hope all is well with you, sam52. I do think about you often and how we went through that hyperparathyroidism together in 2009.
You are also an inspiration on this thread.
Best wishes
Sylvia0 -
Hello Coxy1803
Thank you for your post. I know that none of us wants to be here by choice, but we have formed a good support group and I want to give you a warm welcome on behalf of all of us.I was interested to know about your chemotherapy treatment, as I have read about how the "experts" keep experimenting with the order in which drugs are given. I had read how they thought treatment was more effective if Taxotere (docetaxel) was given first. I was interested to know that you had Avastin with it and then an extra dose of Avastin without the Taxotere. I am pretty sure that Avastin was not being used for breast cancer treatment in the UK when I was diagnosed in 2005. Last time I saw my oncologist in April 2012, I asked if there were any preventive treatments for TNBC and she said they were thinking of doing trials with Avastin.
It was interesting to me that they are now doing FEC in the second half of treatment.
I should think you are still recovering from your bilateral mastectomy. How are you feeling? Do you have any problems? Are you doing exercises and do you have any problems with lymphodema?
If I were you I would not worry about finding out statistics for recurrence rates. Breast cancer is very individual and I do not think anyone can say for certain whether you are going to have recurrence or not. Just tell yourself you have got this far in your treatment and that post treatment you should be having regular check ups with your oncologist and breast cancer surgeon on a regular basis for quite a few years. You will also be having regular mammograms.
With regard to radiotherapy, if I were you I would ask my oncologist why I have not been recommended for radiotherapy. Hospitals seem to function in different ways. I would have thought you would have had a few weeks of radiotherapy to mop up any possible stray cells. Do not be afraid to ask your oncologist about this. I remember my oncologist telling me that it was part of the treatment. The women I know locally all had small tumours and no nodes affected, so they had lumpectomies, radiotherapy and no chemotherapy. The radiotherapy factor is something that it is worth checking on.
There are lots of posts on this thread about diet. We have had lots of discussions about it. It might be worth looking back at your leisure. I would say that you need a simple diet made up of lots of fresh and vegetables, raw food is important. Stay off all dairy products and, if you must have them, have organic. Dairy products have a lot of growth hormones in them and are considered a risk factor in the development of breast cancer. Alcohol continually appears in the news as a risk factor. I do not eat meat, again because of the growth hormones. Apart from some oily and low fat fish, a few prawns, I follow a mainly vegetarian diet, organic where possible.
Wishing you all the very best. It would be useful to know your age, because TNBC is supposed to be a type of breast cancer that affects mainly younger women. Age can sometimes be a factor in what kind of treatment you are give, especially in the UK. In this country we have to stand up for our rights and sometimes fight the PCTs when they decide not to allow certain cancer drugs.
Please stay with us on this thread and we shall help you all we can.
Sylvia0 -
Hello BernieEllen
Thank you for your post. Take your time catching up with the posts and make sure you take time to smell the roses.I hope that all will go well on the 24th May when you have an x-ray on your hips. I was so sorry to know that you are in a lot of pain. At least you know that your bone scan last month was clear. I do hope you will get the pain in your breast and underarm checked out. Please let us know how you get on.
Sending soothing thoughts your way.
Sylvia0 -
Hello Sylvia:
Thanks for the kind wishes. My wife is doing well. Still in some discomfort from the BMX she had 3 weeks back. She would be starting Radiation 3-4 weeks from now.
Regarding the Neupogen Vs Neulasta, differences and mechanish of there functioning, here is a good link that explains all the questions:
http://breastcancer.about.com/od/lifeduringtreatment/f/neulasta_cost.htmFrom what I have read/reearched/gone through, Neulasta is a longer acting filgratism support, that pushes the Bone Marrow to keep generating White Blood Cells over a period of week or more. It is typically administrated with Adriamycin (or Epirubicin -- anthracyclines line of drugs) since they are known to plummet the WB counts. My wife got Neulasta after each of her 4 AC treatments.
Neupogen is a very short acting filgratism support and generally is effective for a period of 24 hours. My wife had her first three Taxol infusions fine without any filgratism support. Then she had a bout with cough for 2 weeks. This likely caused the WBCs to go down and she needed Neupogen shots for three consequtive days after every Taxol infusion (for next 9 cycles).She did experience significant bone pain during these shots, but taking a over the counter pain med (Aleeve/Extra Strength Tylenol) ONE HOUR before the shot and one every 6-8 hours after the shot for couple days significantly reduced the pain. I believe taking a pain med an hr before the shot helped a lot in overall intesity of the pain.
To your point regarding "why some women have issues with White and Red Blood cell and others do not", I belive the numbers go down for EVERYONE during chemo (well thats what the chemo drug is supposed to do anyway -- kill any and fast growing cells). But some women are physically active (walking/working etc during the treatments). Such women are less likely to experience the SEs from low counts (fatigue with low RBCs etc) since moderate exercise helps with a better oxygen circulation in the body and helps body work up the way it is supposed to.
These are just my 2 cents, so please disregard if it does not make sense or you do not agree.Thanks
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