Calling all triple negative breast cancer patients in the UK

peterandliz · November 2013

Hi Sylvia and all,

Sorry for not posting for a while. No idea were the time has gone but we seem to have been busy but not actually doing much. That's the problem when both of us are at home we sit drinking tea all day. Especially in cold weather. We have done some things but it seems to be a lot of small things and a lot of driving about. At least we have not thought about cancer for a while.

We have finally booked a band for my 50th and Liz's 45th birthday party next September

Liz has recovered physically from having her ovaries removed but the forced menopause is not nice.

18 months ago when we had the motorhome Liz suffered from painful joints every few weeks. She had problems climbing into the bed and would lay awake all night in pain. We thought then she was going through the menopause or at least the pain was caused by her hormones. She now has very painful joints again and night sweats. We shall give it until after Christmas but if conditions do not get better she is going to go onto a low does of HRT.

Liz's friend who has stage 4 ovarian cancer is getting married on 14th December and should know by then how quickly it is spreading.

2 years ago Liz was loosing her hair from chemo which is what she hated the most. I remember when it started growing back it seemed like ages before she could even have it trimmed. She loves longish hair. Thankfully it is long again now.

Life goes by to quickly. Everyone going through treatment now have the spring to look forward to and getting back to a normal life without feeling ill all the time. Before you know it you will be 2 years further down the road as time will go by quickly as you start to feel better.

Peter

peterandliz · November 2013

Hi Anne,

Table tennis my favourite subject. That and chocolate fountains?

We hire out chocolate fountains at weddings, parties and corporate events and cover most of the East of England. We were only in Beckenham 2 weeks ago at a party with a fountain.

Table tennis has taken over my life. I only started to play 3 years and 7 months ago. I play in 2 leagues, Wymondham and Dereham leagues in Norfolk. As I type I have a table tennis table and robot set up in my living room to practice on.

I am very competitive and would practice more if my body would allow it but at 49 my joints and muscles do not want to do what I ask them.

Table tennis is a perfect sport for people of any age. we recently had a 82 year old China man visit our club while on holiday and not many people could beat him. We also have a 68 year old who I think has Parkinson's. His condition is no worse than it was 7 years ago because of playing table tennis.

I did think about mentioning Table tennis a few weeks ago as I saw you have a profile picture playing table tennis. We also have a black cat "Bill" that looks so much like "Pandora" your cat. I am not a stalker? honest. Liz Hopking is a member of Lulu's Triple negative group.

Sylvia that's the difference between Facebook and these groups you can see into the other persons life and it makes such a difference.

Must go now as I need to shower and get ready for a league match tonight. Our toughest match of the year as we are fighting it out for league champions against this team tonight.

Oh sugar! Just realised you're an English teacher what ever must you think of my writing?

Peter

apandy · November 2013

Sandra, the doctor (oncologist) advised me to take my temperature BEFORE I took either of these drugs for the reasons you give. But I will be sticking to the migraine tablets I have anyway, so no worries.

Anne

apandy · November 2013

Hi Peter

I played table tennis a lot as a child but never had any proper training. I joined my local club (Wickham park) about 18 months ago and now play in the Bromley and Croydon leagues. By our league standards I am pretty much a beginner but I practice most Sundays with a guy who is willing to coach me and has certainly helped improve my game. I am captain of my team so I have to organise fixtures etc. I have not played so much during chemo but it is nice if I am well enough to play? I know what you mean about it taking over your your life. I wish I had had the opportunities to play and train, as a child, that are available to kids now.

Enjoy your match tonight.

Anne

sylviaexmouthuk · November 2013

Hello Anne

It was nice to hear from you and to know that you have not had any more migraines since Monday. That must be a relief. It is good that one of the doctors rang you and gave you advice about painkillers. It does make you feel better and that doctors really care when they take the trouble to make a personal phone call. I would think that ibuprofen and paracetamol are pretty standard treatment for pain, although my understanding is that ibuprofen is more for muscle pain. I can see how this can help with migraine if it is being caused by stiffness in the neck etc. I used to have migraines for a while when I was at school and they returned for a few years between 2002 and 2004. I had to get the doctor in once and he prescribed paramax. That really did the trick. I did not have a migraine after that but I do wonder whether there was a connection between those late migraines and the developing of my cancer, which was diagnosed about a year later. Who knows? I do think you have to shop around for these medications as the price really varies.

I was glad to know you had a good time yesterday when you played a table tennis match and was interested to know that you play for a team in a league. I think, when you are going through cancer treatment, especially the long journey that chemotherapy is, that the best therapy is to try to be as normal as possible, in your everyday life. As you say it makes you feel part of the human race again, and that is very important. Today you can rest more and remember the good times you had yesterday.

As for suitable headgear for playing table tennis, I would think that your wig would probably stay on. They are very resistant and mine could withstand the Exmouth wind. I did have very elegant ready made turbans that I bought from House of Fraser in the wig department. They might stay on. I used to wear them indoors and also at night because it was very cold on the head at night without hair. They were not very expensive at the time.

I do hope all will go well with your chemotherapy next week. Please let us know what day it is.

I do hope also that all will go well with your appointment at the family history clinic. I think it is very useful to find out about genetic factors.

Do you practice any other sports? What other interests do you have?

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk · November 2013

Hello adagio

It was nice to hear from you and to know that you are reading our thread on a regular basis.

I can understand that life can become hectic and the only thing we can do is to pace ourselves.

I was very interested to know that you had a short break in Mexico and where you stayed sounded truly beautiful. It is so important to have enjoyable days and feel normal.

I think we all have to learn that we cannot be absolutely strict with our food everyday and that when we are away or outside of the home we can only do our best to eat as healthily as possible. We cannot live inside our homes in some kind of bubble. We are social animals and have to be out and about mingling and mixing.

Congratulations on being happy and healthy and enjoying life one year after finishing chemotherapy. I can understand how the past year may have seemed like a bad dream, but it is over now.

Take care and enjoy every day to the maximum.

Please feel free to talk about anything you like on the thread. Forgetting about cancer and talking here about yourself as a person apart from cancer is very important and essential therapy. Do you have any more travelling in mind?

Sending fond thoughts to you in Vancouver. Do you go skiing?

Sylvia xxxx

sylviaexmouthuk · November 2013

Hello Sandra

I was just wondering whether you now have a date for your second chemotherapy and whether you will be having it next week when Anne will be having her third chemotherapy?

Sending you best wishes from England to Scotland.

Sylvia xxxx

sylviaexmouthuk · November 2013

Hello peterandliz

It was so nice to have you back on the thread. I always enjoy your posts. It is true that the days seem to go by very quickly, even if we are just at home and drinking tea! I do not know what we would do in this country without our cups of tea, as you say, especially in cold weather. Whatever you have been doing it is good if it has taken your mind off cancer. We must not let it possess us.

I was very interested to know that you have booked a band for your 50^th and Liz's 45^th birthday party for next September. That will definitely give you something to look forward to next year.

I was glad to know that Liz has recovered physically from her surgery to remove the ovaries but was sorry to know that she is suffering from a forced menopause. I do hope she will gradually feel better and will not have to go on a low dose of HRT. I must admit that I was surprised to learn that HRT was still being prescribed. I did not know that women suffered from painful joints during the menopause. Mine was so uneventful and symptom-free that I cannot really remember it. I do remember reading that evening primrose oil supplements were supposed to help with menopause and that fish oil supplements were supposed to help with joint pain. I do know that many women seem to suffer from night sweats. Perhaps women reading the thread and have had a forced menopause, either through chemotherapy or removal of the ovaries, may post and offer some tips.

I do wish Liz's friend with stage 4 ovarian cancer all the best for her wedding on December 14^th and I do hope that this cancer is spreading very slowly.

I think we can all appreciate how awful we all felt when we lost our hair from chemotherapy. Hair is so important to all of us and it is horrible to watch it all falling out. It is good news that she now has the long hair that she so loves.

You are right about life going by so quickly and we all have to take advantage of every day. It is good to focus on looking forward to spring during these dark nights and cold days of winter.

For those going through treatment they have to keep looking forward to the end of treatment and getting back to a normal life with cancer being put in a small corner out of the way.

Thank you for your words of encouragement to all those going through the ups and downs of treatment.

I do enjoy reading about your enthusiasm for life and for table tennis and chocolate fountains. That 82 year old Chinese man must be in good form. It reminds me of a programme I saw on the television a few weeks ago about senior citizens in China. They were all in their 70s and 80s and doing vigorous dancing and exercises. They certainly did not look their age and were so fit and nimble.

How are things going on Lulu's triple negative group? Things seem to be going pretty well on this thread and there has been no announcement of anyone having died in the three years since I started it. This does not mean there have no deaths and some patients who were really unwell have just disappeared. We have to remember that more people are surviving than dying.

I hope you have a good league match tonight.

You can ask me anything you like and I shall try to answer. I did teach English but my main subject was French. I taught English as a second language for the French Ministry of Education in France and Morocco and taught French for a little while in the UK. I lived abroad for a long time in France, Morocco and Canada.

That is about all for now. Keep well, keep happy. Regards to Liz and her friend and all the TN group on Facebook.

Sylvia.

sylviaexmouthuk · November 2013

Hello Jackpot(Gill),

We have not heard from you for awhile so I am posting to say that I hope all is fine. I hope you have recovered well from chemotherapy4 and that you have started the next dose. Are you now on the taxanes?

Thinking of you,

Sylvia.xxx

big_leggy · November 2013

Hi Sylvia

Yes, I was given my second chemotherapy session on Wednesday and I feel much better than last time. So fingers crossed it continues like that. I actually don't feel like I've had it :-)

Next week they're sending me for an echo scan on my heart just to make sure everything is okay and they'll be sending me home next Friday with a 24 hour tape ECG, again just to make sure everything is okay. My Cardiologist is now talking to my oncologist so any future decisions regarding treatment must be agreed by both before it can proceed.

I had my MRI Breast scan results also on Wednesday which was absolutely clear :-D This was given to me as my tumour couldn't be seen in a mammogram, only in the scan as I have dense breasts (which is weird cos my boobs are the equivalent of two bee stings, lol). It occurred to me a wee while ago that nobody had checked my right breast so I asked for another one to ensure that both were healthy.

Must dash now as I'm at work at the moment but I hope you have a great weekend as I also intend to... ;-)

Sandra xxx

susaninicking · November 2013

Hi ladies,

Just wanted to drop in to say hi and I've been following along. Hang in there all of you having chemo. It's not too much fun but it too will pass. I would suggest trying to find someone to connect with during infusions if at all possible. Just anyone to talk to if you are not feeling too awful will help the time pass. There were a Taxol pack of us on Fridays and we formed a wild and loud and really fun group so honestly, chemo can be relatively fun.

I'm 5 little days away from the end of my treatment. Radiation has not been difficult for me tho for sure my whitey white girl skin is pretty thrashed with radiation rash. No nausea, no problem is my motto! I'm a bit tired but decided this week that this may just have to do with a lack of focused exercise so I just went back to the gym. Uggh. Not easy but I'm powering through with anger at BC! It will for sure ultimately help me feel better, hopefully lose a few kilos, and will hopefully discourage cancer from darkening my door in the future! I hear there is a strong correlation between keeping cancer at bay and aerobic exercise so aerobics it is for me.

I'm having port removal surgery on the 5th and stitches out on the 12th and amazingly enough this will have been exactly 365 days of this journey...my mammogram last year where the problems were found was on 12-12-12 and this will be ending once and for all on 12-12-13. What better sign could there be?

Hugs all around xo Susan

Hero1967 · November 2013

Hi everyone, Just to let you know that I have had my ultrasound and everything is ok. Nothing to worry about at all. I go for my yearly mammo and mri next month so I wll feel that I have had a really thorough check after all that. Best wishes to everyone, especially to anyone recently diagnosed. I was diagnosed in November 2011 and this time of year always makes me look back and think how I was feeling then. At the time I had no idea what lay ahead of me but, after one false start, it is doable and you can get through it.

I must say that exercise and a mindfulness course has really helped my recovery and I so want people to look into both for themselves when they are strong enough. Enough preaching from me I think, love Hero.xx

Carolben · November 2013

Hi Anne,

I've had migraines since I was about 9 years old, they seem to run in my family. I also get them more frequently while I'm on chemo. I think this is because of the chemo messing with any oestrogen production and also the stress; physical as well as mental. They do settle down again when I'm not on chemo, so hang in there.

I was told I could take a codeine/paracetamol mix, and anti-inflammatories. I also think that the steroids didn't help either.

I know it's insult to injury to get migraines during chemo, but be of stout heart!!

Sometimes I think my migraines are also a way of my body just telling me to slow down, dammit - I lie down when the migraine starts, and do yoga breathing, and kind of drift off that way.

Susan, congratulations on finishing your treatment!! Did you go out and celebrate? Hope the removal of your port will go easy. That is amazing - 1 year to the day practically~!

Carolben · November 2013

Sylvia, thanks for the book suggestions, I enjoy reading other women's journeys through bc, especially if they have a bit of humour in them!

peterandliz · November 2013

This man was diagnosed with stomach cancer in 2011 and has appeared on BBC breakfast 3 times and has become famous because of his condition and his appearances. He is someone you cannot stop watching especially when he talks about himself in the second half of this interview.

http://www.youtube.com/watch?v=FtVX0QwwaYw

He was on breakfast news again yesterday but it has not been put online yet but will hopefully soon.

Since being on breakfast news he has joined Twitter and has about 20,000 followers. He spoke about this yesterday and shows the power of Facebook and Twitter. He talks about how he gets down and how dark things get he gets so much love from people on Twitter when in hospital.

peterandliz · November 2013

Hi Sylvia,

Not trying to bring everyone down.

I think we have 2 or 3 that has died on here its just as you say they have disappeared. I remember one lady who was having a lot of trouble with the hospital she attended also her husband had problems. Her children would not let her see the grandchildren either. She was hoping to see last Christmas so we can only guess that she is no longer alive.

There was also one or two others which as far as I remember were at a high stage. It was one of the reasons I read this thread from start to finish was to see how people went through the cancer journey as morbid as it sounds I wanted to look at the worst scenario so what ever happened Liz's journey had positives.

I remember reading some websites at the beginning and thinking Liz only may have a year. That was over 2 years ago. Even though everything is good we know it can change at any time.

Lulu is doing well. Her cancer has not grown and she is still on a trial with a different type of chemo. She has it twice a week for I think 4 weeks then a week off. Then she starts again. She pops up on many Facebook cancer websites giving advice.

This is the trial Lulu is on with good results

http://www.ncbi.nlm.nih.gov/m/pubmed/24173541/

http://www.bioportfolio.com/news/article/1729906/Synta-Announces-Publications-Demonstrating-Ganetespib-Activity-in-Triple-Negative-Breast-Cancer-Models.html

Peter

sylviaexmouthuk · November 2013

Hello big_leggy (Sandra)

It was nice to hear from you and to know that you now have your second chemotherapy session behind you and that you are feeling much better than after the first session. I do hope this will continue, although we are told that things like fatigue build up as the sessions progress. Of course this does not mean that it will be like this for everyone. Just keep looking forward, drinking all that water and resting as you need.

I was glad to know that they are being vigilant with you and that the cardiologist and oncologist will be working together. That is the kind of care everyone needs. I do hope all will go well with the echo scan next week and that you will have good results with the 24 hour tape ECG. It is good to keep checks on the heart so that if all is normal when you start treatment and not normal after treatment you can assume that the chemotherapy has had whatever effect on the heart. I had an ECG before starting chemotherapy and one on completing it and everything was normal. As I have said before, my oncologist told me that she had chosen docetaxel (Taxotere) rather than paclitaxel (Taxol) because it was not so harsh on the heart.

I was really glad to know that all was well and clear on your MRI breast scan. I know that it is difficult for mammograms to pick up anything wrong on dense breasts and my understanding is that the younger you are the denser the breasts and that is why mammograms are not as effective with younger women.

It is good to know that you are on the ball and requesting things that your team may forget, such as asking for your right breast to be checked. It is good to be pro-active as the medical teams are dealing with lots of patients and may overlook some things.

Take care, have a good weekend and keep in touch.

Sylvia xxxx

sylviaexmouthuk · November 2013

Hello susaninicking (Susan)

It was nice to hear from you and I was glad to know you are following the thread regularly. You are nearly there now, congratulations. I hope the rash disappears quickly. Are you putting anything on it?

Enjoy your exercises. I am sure they will do you a lot of good.

It is good that you had so few side effects from radiotherapy. Apparently some patients who have radiotherapy after breast surgery can get a slight cough. This is because when radiotherapy is given to the breast a small part of the lung underneath the breast also receives some of the radiotherapy dose. This can cause a bit of scarring in the lung which results in some irritation and possible development of a cough. Apparently you can also sometimes become breathless but you can be treated for this.

Enjoy your weekend.

Best wishes.

Sylvia xxxx

sylviaexmouthuk · November 2013

Hello Hero1967

I was pleased to know that you have had your ultrasound and all is clear. That must be a great relief for you. I do hope all will be well in December.

Congratulations on being two years out from diagnosis and having everything going well.

It is interesting to know that exercise has proven to be so beneficial to lots of women as they go through treatment and we know that there is a lot of information out there now about the benefit of being active in trying to prevent cancer.

Can you explain exactly what you did on the mindfulness course? I am sure we would all like to know.

Keep in touch and let us know how you get on with the mammogram and MRI.

I would be interested to know which part of the country you are in. It helps to gain information about how the various hospitals are treating breast cancer patients, especially those with triple negative receptors. I have never had an MRI scan but had CAT scans and bone nucleide scans before and after treatment. I have been having mammograms every two years since diagnosis and that was eight and a half years ago now. I started check ups every three months then went to every six months, alternating between the oncologist and the breast cancer consultant. I now have just a yearly check up with the oncologist and will see her in May 2014.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk · November 2013

Hello Carolben

I know that like me you are very fond of reading, so I hope you manage to read the books I mentioned and that you will post about them.

If you want a challenge, and like reading things that are deeply philosophical about the human condition, you might like to try one of the novels by the Spanish writer Javier Marias. I am slowly reading my way through the first volume of a three volume novel, entitled Your Face Tomorrow, 1: Fever and Spear. I read another novel by him this past year entitled A Heart so White. It was truly intriguing and I tried reading it in the Spanish version and the English version at the same time. This writer has been described as the twenty-first century Marcel Proust!!!

By the way, I read that the oral drug capecitabine (Xeloda) works similarly to 5-fluorouracil and is generally well tolerated. I further read that it can be used either alone or in combination with other drugs in patients whose cancer has spread. Keeping my fingers crossed that it has good results for you.

Have a good weekend.

Best wishes.

Sylvia xxxx

sylviaexmouthuk · November 2013

Hello peterandliz

Raymond and I have just listened to the link you sent us for Steve Evans talking about his treatment for stomach cancer that has reappeared. We found it very interesting and can see what you mean about his appeal.

It is a good thing that the Cancer Drug Fund has been extended to 2015 but I think it should be there permanently for all those that need it. If you think about what Steve said with reference to being diagnosed with cancer and the two questions that you need the answer YES to you cannot have NO answers based on a decision by NICE. Having had Taxotere myself, and knowing how potent Taxotere and Taxol are with triple negative breast cancer, I was most interested to know it was being used for stomach cancer or at least for stomach cancer that had returned. I remember the fights going on back in 2005 for some women to get Herceptin.

It was sad to hear that the tumour had been growing again and bleeding but that radiotherapy had helped with this.

Thank you for sending the link.

I have no doubts about the power in today's world of Facebook and Twitter. They are a way of life, especially for the younger generation.

I think you are probably right that a few people on this thread may have died, but we have no proof. I certainly remember Dulcie who was having a lot of trouble with the hospital and also with family. I also remember her husband had cancer. We did a lot of PMs together and I know she was very distressed. We have to remember that Dulcie had a rare type of cancer, known as metaplastic breast cancer. She suddenly stopped posting and that was that. I know that she posted on Facebook somewhere but do not know exactly where, because I understand there are different TNBC groups on Facebook. I know that she seemed to know Michael from one of these groups. There was also the really wonderful Josephine, who was a source of great information and was also having a lot of problems. Her posts just suddenly ceased as well. There was Liv from Western Australia, so full of life, who suddenly disappeared. Again she had a rarer and difficult type of cancer known as inflammatory breast cancer. There was also TEK2009. I would love to know what has happened to these women and would like to think they have just moved on, but I fear the worst. It would be nice if people would let us know what happens to these women that became so dear to us. I always appreciated the fact that Bernie_Ellen who contributed so much to this thread posted to say she was moving on and had to put cancer behind her. She was a great character who also belonged to some TNBC group on Facebook and may well be posting there.

I really admired you for reading this thread from start to finish, so at least you know all that had been going on. I think that everyone should try to do this, just taking it slowly.

I was glad to know Lulu is doing well, that her cancer has not grown and that she is still on a trial with a different type of chemotherapy. I would be interested to know what chemotherapy drug is being trialled. Is she on a randomised one or is she definitely getting the drug?

Thank you for sending the links, which I shall have a look at.

It is very cold here today but dry and bright. The seafront looks pretty desolate these days. We have a big new modern building with restaurants and a bowling alley, but it does not seem to be attracting people. It has taken years to build.

Have a good weekend.

Best wishes.

Sylvia

adagio · November 2013

hero1967 - I have just completed an 8 week mindfulness course and have benefitted from it immensely. I would also highly recommend it to those who can have access to it. Mine was offered through the cancer agency and we just did a once day silent retreat which was an amazing experience of going inward for a day - a whole day to simply being and focussing entirely on oneself. In a way this sounds selfish, but one of the theories behind the mindfulness is that until we can fully accept ourselves without judgment and with compassion, then we cannot fully accept those around us. In the course I learned how to respond as opposed to react, and of course to live moment to moment being in the now. Sounds simple but actually takes discipline to put into practice.

Congrats on being 2 years past diagnosis. Did you have chemotherapy? It's not mentioned in your bio - just curious?

Jackpot · November 2013

hi Sylvia

Hope your well, I've had a terrible time on tax and had an appt with my oncologist last Friday and she said they weren't going to let me suffer like that again and gave me two choices which I have to let them know by tomorrow....they were to stay as I am with too more left but on a reduced dose and strong painkillers to take away with me or to go on weekly taxol with a picc line fitted, were the side affects would be less but it would not be finished till after the new year,

I think staying as I am but on a reduced dose with pain relief is the way to go I think...at least ill be finished for Xmas,

My Neice finishes her normal chemo tomorrow and is going in to have her stem cells harvested on the 2nd dec were she will be in isolation while she has high dose chemo to kill off all remaining bone marrow then the good stem cells are replaced...think that's how it works anyway, but she looked well when I saw her and seems really positive so fingers crossed this works

Take care

Gill

sylviaexmouthuk · November 2013

Hello Jackpot (Gill)

It was nice to hear from you but I was so sorry to know that you are having a hard time on docetaxel (Taxotere). I know that some women do have a hard time on the taxane group of drugs (paclitaxel, Taxol, and docetaxel, Taxotere). I do wonder why you have been having so much pain on this drug, what kind of pain and where? I do know that side effects can build up as you build up the treatments. With just two more sessions to go I do hope you will be able to manage these, get this treatment behind you and build up your immune system.

I think if it were me I would stay on the regimen that you are on, but a reduced dose and strong painkillers to take if necessary.

I know that some of the women who have been on the thread and have had one or other of the taxane drugs, have found everything much easier to bear on a weekly dose. I remember Mumtobe did weekly treatment and she coped well.

A lot of women also prefer to have some kind of port like a picc line inserted rather than going through the process of cannulas. This is especially good if you are having trouble with veins when using cannulas. This could be an alternative solution for you if you can put up with the chemotherapy continuing into the New Year. I can understand however that you would like to have this out of the way for Christmas so that you can enjoy the festive season.

Let us know how you get on so that we can support you. Look forward as you have nearly finished with this chemotherapy ordeal.

I do hope things will go well for your niece. She is having to face a lot and it will be hard for her on December 2^nd when she has her stem cells harvested. At least this will soon be over for her. Her positive attitude should work well for her.

Take care of yourself. You can do this, Gill.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk · November 2013

Hello Carolben

I thought you might be interested in the drug that was mentioned on a link that Peter sent in. I looked at the link and it was all about trials of a new drug called ganetespib. It was talking about a comprehensive evaluation of the activity of ganetespib, a potent inhibitor of heat shock protein 90 (HSP90) in triple negative breast cancer. Please read the link for yourself but the conclusion from this evaluation was that there was clinical evidence of tumour regression, suggesting that ganetespib offers considerable promise to target TNBC. I think it was being used for metastases. You might like to check it out for yourself in case it is useful in the future.

http://www.ncbi.nlm.nih.gov/m/pubmed/24173541/

http://www.bioportfolio.com/news/article/1729906/Synta-Announces-Publications-Demonstrating-Ganetespib-Activity-in-Triple-Negative-Breast-Cancer-Models.html

Take care. Thinking of you as I eat some delicious blueberries from South Africa.

Sylvia xxxx

Hero1967 · November 2013

Hi everyone, I just wanted to answer a couple of questions. Sylvia, I live in Wales and I must say that with all the problems that the welsh health service has been having I have been extremely lucky and well looked after throughout my treatment. I have had a ct scan, 2 bone scans, an additional biopsy because of a scare in my other breast, 2 ultrasound scans, 3 mri's( I freaked out in the middle of one), mammo's and an xray on my back after I completed chemo because of terrible back pain. I feel very fortunate that everything has come back clear, I just hope and pray that everything continues to do so. I must say that I am not backward in coming forward when it comes to my health in relation to this disease and I do try and keep an eye on any suspicious lumps or aches and act accordingly.

Adagio, the mindfulness course I completed also lasted 8 weeks and was just as you described. It is aimed specifically at cancer patients and carers. During the first session we were handed a raison each and had to focus on the raison, look at it, smell it, roll it between our fingers and hands, listen to it and then taste it!!! I didn't think I'd go to the next session as it was all a bit way out and "hippy" for me, but we were also handed a cd which contained an exercise spoken by our teacher whereby we had to lay down and listen to each part of our bodies, from the toes to the top of the head and to just relax and see if any parts hurt or ached and to just treat that part which did with kindness. I loved this part and looked forward to the next week and the next cd. This is the beginning of learning to focus on the here and now and to really concentrate on what you are doing at the time without thinking of something which needs doing later on or worrying about the future. You are right it is difficult. I also went on a one day retreat where we didn't speak all day but listened to stories and concentrated on listening to our bodies. Lunchtime was very strange, I found it best to avoid eye contact with anyone incase I started to giggle through embaressment, but not having to talk to anyone is strangely really nice because there is no pressure on you having to make conversation.

I was told about the course whilst undergoing chemo. I had 6 rounds of FEC. I was supposed to have 4 TC but I had anaphalaxis whilst undergoing the first round. Must go now, love Hero.xx

adagio · November 2013

Jackpot - taxol was not a kind drug to me at all. I ended up having only 70% of the treatment for the last 2 treatments and I was so grateful for that. I took the combination of ibuprofen and Tylenol for the pain and it worked like a charm for me. Good luck with your decision. I was so glad when it was all over! Soon it will be for you too - hang in there.

sylviaexmouthuk · November 2013

Hello Hero1967

Thank you for your very interesting and detailed post. I am thrilled that we have someone on the thread from Wales. I think I have mentioned in the past that, as far as I knew, we had no one posting from Wales. I am so glad you are here with us and I hope we can be of some kind of help and company to you. We now have all corners of the UK covered and that is good because we can get to know how patients are being treated in England, Wales, Scotland and Northern Ireland.

I was so pleased to know that you have been well looked after on the NHS in Wales. You must be relieved to know that everything came back clear after all those scans. You are right to keep an eye on your body, listen to it and read it and check out anything that does not seem normal to you. On this thread I have always said that we must be our own best advocates, take responsibility for ourselves and be vigilant with our medical teams because they are only human and can miss things.

I was interested in the details that you gave adagio on the mindfulness course and glad to know that you have found it of benefit. I do not think I could handle it, but I believe that whatever benefits individuals must be good. I think I would be analysing everything too much! When I was first diagnosed I did pop in to FORCE, a charity in the grounds of the hospital I was attending, which is designed for cancer patients. I was offered aroma therapy etc. but did not want it. I was also offered counselling and, out of character for me, went to one individual session. It was interesting but I felt I did not want or need any more. After finishing treatment the breast cancer care nurse invited me to join the Moving On group. I went to one, but decided it was not for me.

I hope all is well when you have an MRI and mammogram in December.

Fond thoughts.

Sylvia xxxx

peterandliz · November 2013

Hi All,

Just had to post this. This may make you cry. How ever bad our own journeys have been how I would cope if this was happening to my son I really do not know.

All through Liz's cancer journey I have stayed detached emotionally. I have remained strong throughout and looked at it logically as that is how I function best. I could easily be an emotional wreck if I let things get on top of me.

Deryn who the link below is about went to school with my son and they are in the same year. I can understand how his mother feels when she says she is writing this as an outsider looking in on someone else's life or looking at it as a story.

http://www.edp24.co.uk/mobile/news/i_cry_because_of_the_lost_potential_he_is_something_wonderful_and_this_just_is_not_fair_moving_and_heartbreaking_update_on_deryn_blackwell_in_his_mother_s_own_words_1_3046292

Peter

susaninicking · November 2013

Peter, this is for sure heartbreaking. This should not be happening to a child and how a parent copes is way beyond my understanding. Thanks for the link.

Calling all triple negative breast cancer patients in the UK

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