Calling all triple negative breast cancer patients in the UK
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Hi Sylvia & everyone,
All is good here thank God. Day 19 of 25 down, only 6 more to go! I am very ready for treatment to be over now and I'm excited to be nearing the end. Met doc today and the site of radiation looks quite good for day 19 which was good to hear.
Emma is keeping us busy, she is teething now and gets a bit cranky but overall she's so good. Heading to lovely Galway this weekend with a group of women for my sisters' (twins) 40th bday celebrations and I can't wait to get dressed up and have a few drinks and just love life again.
Sylvia I am intrigued to hear more about that article 'How to cure Cancer' (did i get that right?), if you could tell me more I'd really appreciate it. Can you imagine if it were to happen....
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Hello Michael,
It was so nice to hear from you and to know that you are surviving the weather and that you have not had any snow in Killyleagh. It looks as though we are all getting surprise weather here in the UK. It is unbearably cold in Exmouth today and my head was aching in the little bit of walking that I did with Raymond and my brother.
I can understand how you are fed up with wearing your winter clothing. I feel the same.
I did love your quote from Kingsley Amis and I do agree with it. I do not want longevity if I do not have quality of life.
Do you know about the poster that was put up in railway stations which said “Harwich for the Continent” and someone had scrawled on it “Frinton for the Incontinent”. Do you know Frinton-on-Sea, near Clacton in Essex. It used to be our favourite place to go on a hot day when we lived in Essex. It was so lovely to walk along the unspoiled greensward and you could feel the silence there. Even the seagulls were quiet and we liked the High Street.
I agree with you about the cold and losing your hair through treatment. I began my treatment for chemotherapy on November 17th 2005 and my hair, which was fairly long and abundant began to fall out after the second treatment and left me feeling really cold. My wig was warm, but during the day and at night I used to wear a Simone de Beauvoir ready made and smart turban that kept me warm.
We shall all be thinking of you on Thursday when you have your second round of chemotherapy. I can understand how all the old anxieties surrounding treatment come back and you start thinking of what next. I know that sometimes I think about what I would do if my cancer came back or if I had a new primary or metastases. When I think like this my body seems to tighten up and I certainly feel fear and ask myself whether I would have the strength to go through it all again, because I feel I shall know what to expect, but of course you do not really know what to expect.
It is a good thing that you are getting these prophylactic medicines if they stop nasty side effects. Even though we think everything is moving too slowly with cancer treatment, my recent reading seems to say that things are going more quickly.
Let us know your experiences with your thrice weekly antibiotics, daily antiviral and daily anti fungal, mouthwash and Neupogen. With all the laxatives you should not be constipated! We all get individual and different treatments.
It looks as though your cousin managed to give herself a good quality of life and for a long time. Can you explain to us what Angel therapy is? For some reason, I have great belief in Chinese medicine and I do believe that astragalus helped me a lot while I was making up my mind about treatment. I had it prescribed to me by a reputable herbalist.
Thank you for updating us about the Janette's Foundation. I agree with you that it is useful for the newly diagnosed to share the experiences of those that have been through the treatment. That is why I try to encourage patients who have finished their treatment to stay on the thread and help others. It is too easy to get your comfort, support and information and then leave. I can see the other side as well, which is that people who have finished treatment want to put it all behind them and get on with as normal a life as possible. However, I think we should put something back to help others. I think that feeling devastated is a common feeling and I am glad that you were there to help Janette. I know that I could not have got through my treatment without Raymond's support and my heart used to go out to the men and women at the hospital doing all this treatment on their own. Cancer is not a journey you should make alone.
If you have a chance, Michael, get a copy of Time Magazine, dated April 1st 2013, and read the article entitled “The Conspiracy to End Cancer”. I found it truly profound and interesting. I would love to hear your opinion. I need to read it again when I can find the time.
Wishing you all the very best and sending fond thoughts your way.
Best wishes.
Sylvia
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Hello Mumtobe (Carol),
Thank you for your post. I was so glad to know that all is going well and you are now nearing the end of this long and tiring journey.
I do hope you will have a lovely weekend for the celebration of your twin sisters' birthday and I can understand how you want to get dressed up and have a few drinks and love life again. you have certainly earned it.
You mentioned the article that I mentioned in a previous post. It is in Time Magazine dated April 1st 2013, as I have just mentioned to Michael. On the cover it says “How to Cure Cancer (Yes, it is now possible-thanks to new cancer dream teams that are delivering better results faster) and is by Bill Saporito. Inside the article is “A team-based, cross-disciplinary approach to cancer research is upending tradition and delivering results faster” and the title is “The Conspiracy to End Cancer”. There are six very detailed pages to this article. I hope to find the time soon to go through it and pick out salient points. If you can get hold of this magazine it would be nice and useful if we could all discuss it and express our opinions.
I do hope you will have a wonderful time in Galway and will that be Shiraz or Chardonnay???!!!
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I hope you are all doing well as mid week approaches and the Easter bank holiday weekend comes around.
I saw from my diary that it was Human Rights Day, a public holiday on Thursday March 21st in South Africa. It did not seem to get much publicity here in the UK and that is a pity, because human rights are very important.
Best wishes.
Sylvia.
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Hello beachmd
Thank you for your PM. I shall answer it a bit later on today.
It was nice to hear from you again. I remember you did post in October.
I hope all has gone well for you since then.
Best wishes.
Sylvia xxxx
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Hello everyone,
I am going to try to post the salient points of the article on cancer in Time Magazine that I mentioned earlier on.
First of all, as I think most of us on this thread already believe, there will be no magic bullet to cure cancer and no individual hero or heroine who will be able to claim this prize. That is how the article begins. “No exalted individual, no victory celebration”.
The article states quite clearly that cancer does not work that way and that it is not just one disease but very many and that there is no one cause, it is multi-causal. Some of the factors involved in the development of cancer are genes that have gone awry, growth inhibitors that have gone missing, hormones and epigenomes that have changed and rogue cells that have somehow broken free.
Cancer is a disease of great complexity.
An organisation called Stand Up to Cancer (SU2C) has been funding dream teams organised by a Nobel Prize winning molecular biologist, Phillip Sharp. These dream teams are a move away from the usual narrowly focussed investigator working away on one small grant at a time. The new dream teams bring together medicine and science.
Former Paramount CEO Sherry Lansing founded SU2C with the goal of attacking cancer in the same way that you make a movie, that is you get the best and most talented people, you give them generous funding, you watch their progress and go for big pay-offs, all of this on a tight schedule. This is how the dream teams are put together.
At the MD Anderson Cancer Centre a similar collaborative approach is being adopted and is being called the Moon Shots programme. Six multi-disciplinary groups have been put together to make comprehensive attacks on eight cancers. They are lung, prostate, melanoma, breast, ovarian and three types of leukaemia.
As with the SU2C effort, the teams working on all this will be judged by patient outcomes and not by the number of research papers published. People will be judged by whether they have reduced deaths from cancer.
There are hundreds of drug agents being developed that will target genetic mutations that have been identified so far.
The physics of cancer are known. It now requires a massive engineering feat. This has gone from taking 30 years down to 2 years, but that is still too long. Cancer does not wait that long!
A SU2C backed team has constructed a smart chip that can trap circulating blood cells (CTCs) in a blood sample. Many tumours release cells into the blood stream and if these circulating cells lodge in another organ and start to grow, we then have metastases. If these odd cells can be spotted before they lodge, then we can steps to try to stop metastases.
All of us that have been through cancer treatment know what it is like to have finished treatment but then have to live with the knowledge that we could at any point have to face such a thing happening to us. Imagine what it would be like for this to be able to be stopped.
There is another team backed by SU2C that is targeting a pathway called PI3K which is responsible for three women's cancers, ovarian, endometrial, but especially breast. Apparently the PI3K mutation is involved in 30% of breast cancers and is also the most frequently mutated oncogene in cancer.
What I found really interesting was the following information about combining a PI3K inhibitor with a PARP inhibitor in order to combat a very nasty mutation in the BRCA1 gene that leads to patients having a high risk of developing ovarian cancer and a severe type of breast cancer known as triple negative. Using mice, this combined therapy resulted in cures for BRCA1 mutant and TNBC. This had never happened for other therapies. They then moved onto human trials. From the article it looks as though the trials are ongoing. It was interesting to read in the article how different drug companies producing PI3K inhibitors and PARP inhibitors, who would normally be in competition, came together to enable these drugs to be used in combination.
Another example of teams of researchers and physicians working together is also happening at MD Anderson. Here, teams are working together on breast cancer and ovarian cancer, because the genetic markers are telling them that the cancers are related.
There is an example of one patient who is in this so called Moon Shots programme and you will be interested to know that she is 37 with children and has triple negative breast cancer, so called, as we know, because of its three negative receptors. This is a hard to treat breast cancer, again, as we know, because, after the standard treatment, there is not much on offer. This person is in a clinical trial that is testing the effectiveness of eribulin, a cancer drug that is typically used in metastatic breast cancer, as an adjuvant – an immune–system kick-starter. Apparently everything is going well so far.
There is more hope for other potential patients in the pipeline because of emphasis at MD Anderson on prevention and early detection. The emphasis has to be on early detection and prevention, especially in those that are genetically predisposed to breast cancer. Relatives need to be tested. If they are offered testing for the same biomarkers, big problems could be prevented by trying to catch the cancers early.
I hope you will find this information interesting. The article is quite long and complex, but I have tried to pick out the main parts and simplify them. If you want more information then please take the trouble to read the article completely.
Wishing you all well.
Sylvia.
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Hello Sylvia and all,
Here's a link to that Time article. http://healthland.time.com/2013/03/21/cancer-dream-teams-road-to-a-cure/
I started radiotherapy a "week" ago and have five treatments under my belt (or bra??
) So far, so good...It's freeeeezing here in Germany too!
Pretty sleepy, off to beddy-bye,
Cynthie
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Ooops, that wasn't an actual link to the article (but there are interesting links connected to the article...). Must be rads fatigue setting in!
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Good evening
That was an interesting summary of the article from Time. I must read the whole thing. I used to have a subscription to the magazine until a couple of months ago.
Angel Therapy, as I understand it is a bit like a seance, the therapist tells you what the angels are saying and advising. My cousin found it helpful. She was very religious so that probably helped her derive comfort and benefit from the sessions.
I loved the Frinton on Sea graffiti. I know of Frinton but I don't think I have been there. Maybe I will put it on my agenda for thee summer.
I hope everyone has a nice weekend.
Michael
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Good morning. As always, I found the aricle from Sylvie very interesting.
I hope that the radiation treatment goes well for all.
Very cold here.
Have a very Happy Easter
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A redneck, a preacher, and a lawyer are travelling in a car when it breaks down in front of a farm. They ask the farmer if they could spend the night.
The farmer said, "Sure, but my guest room only has room for two. One of you will have to sleep in the barn."
The preacher says, "I don't mind being with God's animals. I will sleep in the barn."
An hour later, there's a knock on the guest room door.
It's the preacher. He says, "I can't stand that noisy chicken. Could I switch with one of you?"
The redneck says, "There are always loud animals back in Alabama I can take it."
An hour later, there's a knock on the guest room door.
It's the redneck. He says, "I can't stand that smelly cow! Could I switch with one of you?"
The lawyer says, "Well, I guess that leaves me."
An hour later, there's a knock on the door. It's the chicken and the cow.0 -
Hahahah that is so funny Bernie, thanks for the post.
Thank you for the information Sylvia, you do spend a lot of time on research and it is so appreciated to be able to have it all presented in such a concise and easy way.
Evening here, finished a lovely meal of healthy mixed vegetables, stir fried in chicken broth and poached salmon. Getting ready to travel tomorrow.
Hope everyone has a healthy and side effect free Easter.
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Hahahah that is so funny Bernie, thanks for the post.
Thank you for the information Sylvia, you do spend a lot of time on research and it is so appreciated to be able to have it all presented in such a concise and easy way.
Evening here, finished a lovely meal of healthy mixed vegetables, stir fried in chicken broth and poached salmon. Getting ready to travel tomorrow.
Hope everyone has a healthy and side effect free Easter.
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Hello Cynthie,
It was nice to hear from you. Thank you for the link which I shall look at later.
I was glad to know that all is well with you after your first week of radiotherapy and I hope it will continue.
It looks as though in Europe we are getting unusually cold weather for this time of year, but it could be that we are getting back to more normal weather after years of having it fairly mild. Here in Exmouth it is very cold and windy but we have not had snow. The Easter weekend begins tomorrow and that really heralds the opening of the season here in Exmouth. The Sandy Bay Holiday Camp, which can have anything from a few thousand to eighteen thousand holidaymakers opened this past week as Easter is early. The open top bus is also running because of this, so I hope people have brought their thermal underwear! The funfair has come to the seafront and the ice cream kiosks are open. Our supermarket is packed.
I hope you have a good holiday weekend.
Are you in touch with your American compatriot susaninicking? She was due to start treatment and I was wondering what had happened to her.
Best wishes.
Sylvia xxxx
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Hello Michael,
Thank you for your post. I was glad to know that you found the article from Time interesting.
If you get a chance during the summer, I am sure you would appreciate the calm and peacefulness of Frinton. I have not been there since moving to Devon in January 2002, so I do not know what it is like now.
I hope you have a nice long holiday weekend and that you have a good rest from work. I do not think it is going to get any warmer for a while yet, which is a pity.
Take care of yourself.
Best wishes.
Sylvia
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Hello BernieEllen,
Thank you for your post and I was glad to know you found the article interesting. It makes all the work worthwhile.
It looks as though we are all suffering from the cold and are in dire need of some warm days.
Thank you for making us all laugh with your latest joke.
Enjoy the Easter weekend whatever you choose to do.
Best wishes.
Sylvia xxxx
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Hello Lolalee,
Thank you for your post. I was glad to know that you appreciated the latest information that I posted.
I was glad to know that you are eating healthy meals while you are in Hong Kong.
Have a good holiday weekend and make sure you enjoy every day to the full.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I hope you are all winding down today and that you will enjoy the holiday weekend.
Today our local supermarket was doing a roaring trade as people made preparations for their family get together for Easter. As I heard somebody say, you would think it is Christmas. Hot Cross Buns were flying off the shelves and it made me wonder whether anyone makes their own these days. There was wall to wall Easter Eggs. I think there will be a lot of hyperactive children for the next week or so.
I would like to thank all of you who have been very active in your posting this week and also the increasing number of people viewing.
Special hellos to:
First of all Ireland. Have a good time in Galway, Mumtobe (Carol).
I hope you are having a nice family get together, linali (Lindsay).
UK. I hope you will have a good rest from work sam52. I think it is going to be too cold for gardening.
Australia. I do hope we shall hear from you sometime, Liv. We all care about you and miss you.
US. FernMF, InspiredbyDolce, PeggySull, Placid44. I hope all of you have a great weekend and thank you for all your posts.
Canada. Adagio and Sjesse12345. I hope all goes well with your radiotherapy, Adagio. Did you get the results of your DEXA scan? Sjesse12345, I hope all is going well with your chemotherapy.
South Africa, Carolben. We are all wondering how you are and how the Taxol is going. I hope you are well supported and that you have your family with you for this holiday weekend.
Fond thoughts to all of you, wherever you are and keep well and enjoy every day to the full.
Sylvia xxxx
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Hello Cynthie,
I have just looked up the link that you sent and, although it is not exactly the article in Time Magazine, it is a potted version online of the article. There is even the cover of Time Magazine on the site. The title is Dream Teams: Road to Cure?
Everyone can now go to the link that Cynthie sent and have a read.
Thank you Cynthie.
Sylvia xxxx
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Dear InspiredbyDolce:
Thank you for your encouragement, Debra! I will for sure come here more often when i am recovered from the chemo. It is so warm and nice to know that i am not alone.Hi, Sylvia
It is so nice to know you and talk to you.
after i was diganosed, i did a huge amount of searching and learning. --- i want to find an answer to my question. so you bet i asked about my genetic testing for the BRCA. Unfortunately, my doc said it was not necessary as i do not have a single family member with any kind of cancer.
Do you know anywhere in the uk can test the BRCA1/2 without a doc or gp 's referring? i DO want to have this test (i dont mind to pay for it).0 -
Hello EmmaL,
Thank you for your post. It was nice to see you back on the thread and I can understand that you did a lot of searching on diagnosis to be informed about your breast cancer.
I also asked about genetic testing and managed through my medical team to get an appointment at my hospital with a genetic nurse. Apparently you have to do this first of all in order to proceed to an appointment with a genetic specialist. With the nurse I was asked a lot of questions and she filled in a lot of paperwork. At the end she said she would not be referring me to a specialist geneticist as she felt that my age indicated just a rogue occurrence of breast cancer. She said that usually when there is a BRCA1 or 2 problem, breast cancer develops in young women. She did ask me if I wanted to leave a DNA blood sample at the hospital and this is what I did. I suppose they will keep it there until, if and when, another family member develops breast cancer. She did say at the time, a few years ago, that I could get it done privately for £3,000 but that she did not feel it was worth it.
I do not know how old you are, but if you are a young woman, there is no harm in trying to get this done on the NHS, especially if you have children. Remember that breast cancer can also come through the male side of the family. If you do not mind paying, you could try one of the private hospitals, such as the Nuffield or BUPA. I am not sure whether you have to have a referral but I cannot see why any doctor would refuse this if you are prepared to pay.
I do hope everything will go well with your chemotherapy treatment, and that you will not have too many side effects with the docetaxel (Taxotere). We are told that it is very effective against breast cancer with negative receptors.
Have a good Bank Holiday.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Just catching up and what encouraging information you have given us. T o have even some of the fear of recurrence or spread reduced would be marvellous and allow us to enjoy our lives with less worry.
For me Easter is a time of hope and new beginnings. My parents used to come at this time of year.
This year has proven to be like that too.
Leigh has had the first female hormone implant so it is an important 1st step. I hope that this journey will bring him/ her peace. We have sorted out some of the accommodation issues and hopefully is no longer under threat of eviction. We have made the landlady and other tenants aware of Leigh's Aspergers and trans-gender.
On what is Holy Thursday here I had what I consider to be my own little miracle....I received a letter to say that my invalidity appeal was granted. I do have to be reviewed in 12 to 18 mths to see if I have improved but it is such a relief for many reasons. Financially, mentally [think I drove everyone mad including myself] and now I wont feel like a fake when I am visiting the medics. They may take me seriously and not think that I am exaggerating to get the invalidity. A little disappointed by some peoples reaction such as...how did it come just like that, but I am so happy to have got it.To have no income was very worrying.
I'm off to help out with refreshments at a memorial 10k run, the proceeds are to go to the centre. Tries a bit of 1 armed bag packing yesterday as we have a 3 day slot and its hard to get volunteers. I stood with a friend and did what I could.
It is very cold here but bright. I hope that Mumtobe is having a wonderful time in Galway and that the cold isn't making your pain worse Berniellen and thank you for making me laugh.
To everyone else I wish you a happy Easter and to those in treatment that all is going well.
Looking forward to a chocolate filled day tomorrow after lunch and then a tractor race!
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Hello linali,
Thank you for your post. I agree that the information I found in Time magazine is encouraging and we just need the experts to get a move on. It is about time that there was some kind of big break with cancer.
I was glad to know that you are getting some good news for a change. I do hope, like you, that Leigh will get some peace of mind as the trans-gender process moves along. It is good news that it looks as though he will be able to keep his flat.
In the UK the Thursday before Good Friday is known as Maundy Thursday and the Queen hands out Maundy money to some selected people.
I was glad to know that your invalidity appeal was granted, as that will help you financially. I hope it will be maintained. It is such a pity that people who have not had cancer cannot understand the lifelong implications of it. There is the person before treatment and the person after treatment. I would not take any notice of other people's reactions.
I was glad to know that you are keeping active at the centre. What a cold day to be running and standing around, but it is all in a good cause. It looks as though hot soups and hot chocolate will be required.
It looks as though we are still in a cold freeze here and I think it is really wearing people down. It is sunny today in Exmouth, but there is no warmth from the sun. In spite of the cold there are plenty of people on the seafront and they are even eating ice creams!! I do sometimes wonder about the English. Chairs and tables are out in front of the cafés and people are sitting eating and drinking. I do think the English enjoy a bit of misery. I saw a young woman with a sleeveless T shirt and shorts. Are we having fun yet?! That is what I call this English delight in misery!!! I think we are trying to be like the Continentals but its does not quite come off.
Enjoy your Easter delights.
Fond thoughts.
Sylvia xxxx
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Linali,I am so pleased to hear that your appeal has been granted.
Sylvia is so right, ignore peole's reactions. You do not have to explain yourself.
Wishing everyone a safe and peaceful Easter.
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Hi BernieEllen,
Thanks for that, how are things with you ?
Had a busy weekend with fundraising and it made me feel quite ashamed to see people so much older than me all kitted out in their running gear on Saturday.
I have an appt with the radiotherapy consult in the morning and I'm hoping that he can come up with a solution to the skin reaction.
I am hoping that the docs will take me more seriously now that I have been granted the invalidity. Sometimes it felt like they thought I was exaggerating just to prove myself. I would like somehow to be able to help others because the main difficulty I found was getting supporting letters from the doctors. They dont seem to want to acknowledge that there can be long lasting effects.
I still cant believe that they allowed my appeal. I have to wait several weeks for it to be processed and only when I actually have it will I feel certain.#
Still so cold. I think that Kerry was at an Easter party in Kilkenny. Perhaps the cold wet weather meant it was cancelled.
Thinking of everyone in treatment and hoping that spring will come soon.
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Hello! Here is some information I just came across regarding probiotics, from a letter from the Mayo Clinic.
http://www.reuters.com/article/2009/07/07/idUS174822+07-Jul-2009+PRN20090707
Also, if anyone is looking for a place to buy women multi-vitmains, CoQ10, probiotics, etc, I have really liked the Garden of Life products. I utilize their raw organic protein powder to help me recover from my vigorous workouts better, but I'm now starting to add in a multivitamin, CoQ10, and Raw Probiotics. I do takd D3 liquid from Source Naturals.
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Hello everyone,
I am just popping to say that I hope you all had a good Easter weekend and that you did the things that make you happyu.
Thank you Bernie for that beautiful picture. It does brighten up the thread.
The sun is shining here today, but it is still too cold.
Best Wishes,
Sylvia.xxx
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Hi, Sylvia
thank you very much for your replying.
i havent seen my medical team since the chemo was started. i will try my medical team next time and see what they can do in terms of this genetic test.
best,
emma
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Hello InspiredbyDolce (Debra),
Thank you for your post and the link. I hope to get to look at the link later on today.
Best wishes.
Sylvia xxxx
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Hello Emma,
Thank you for your post. I was only too glad to be of help.
I hope you are coping well with your chemotherapy. If you have any problems please let us know, as we are all here for you.
I hope you will be able to get the genetic tests that you want.
Thinking of you.
Sylvia xxxx
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