Calling all triple negative breast cancer patients in the UK
Comments
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Sorry to let you know, Jenn has passed away also.
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Hello Bernie Ellen,
Thank you for letting us know that Jenn has died. What a sad day this has been. The news of two deaths today is heart breaking. This disease is destroying too many lives.
I thought your poem on TNS was very moving. It brought back a lot of memories for me about one of my brothers who died in 1995 of cancer that had spread through the body. He died in less than five weeks after diagnosis. We had a humanist funeral for him according to his wishes and that poem was recited.
It has been a sad day all round and I shall be glad to go to bed and start a new day tomorrow. My friend here in Exmouth told me that one of her friends has just found out she has cancer throughout her body, primary unknown, no treatment possible, just waiting to die. She also told me that the son of another friend died this week quite suddenly. He was a Downs syndrome baby, not expected to live at birth, but who survived into his forties.
All we can do with the breast cancer is hope for a big breakthrough, especially with the TNBC.
Look after yourself Bernie. Live one day at a time and to the full.
Kind thoughts
Sylvia
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Thank you Sylvia. Life can be so painful.
I am going to my stay with my friend for a long weekend. We haven't seen each other in over a year.
Have a peaceful weekend.
Bernie
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Hello BernieEllen
I hope you have a very good weekend with your friend. Since you have not seen each other you will probably have a lot to tell each other. Knowing you, there will probably be a lot of humour and laughs.
Enjoy, Sylvia
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Hello everyone
I hope that those of you who have had a busy week are having a wind down Friday.I saw a few things about breast cancer this week as I searched for any latest news. The first one was from the Mayo Clinic in Jacksonville, Florida, about a new approach to treating metastatic TNBC and renal cell carcinoma, which is the most common form of kidney cancer.
They have apparently discovered two drugs, romidepsin (Istodax) and decitabine (Dacogen), that, together, work to activate a powerful tumour suppressor gene that is silenced in these cancers. These two products are already in trials for other cancers. Once this gene, known as sFRP1 (secreted frizzled related protein 1), went to work after the drugs were used, the laboratory tumour cells stopped growing and died.
These two drugs are approved by the FDA to treat blood cancer and are being tested individually for other solid cancers, where the gene sFRP1 has been disabled. This study was the first to test the use of both these drugs together in metastatic cancers that are linked to sFRP1.
There is now the basis for a clinical trial which would be aimed at coming up with effective treatment for the two mentioned cancers.
Both of these drugs are epigenetic ones that can modify genes in a way that affects whether they are turned on or off.
It seems that this could be good news for us, but how long will it take for it to be in standard uses?
This is the way that I have interpreted the information. If I were you, I would read this article for myself. The link is:
http://www.newswise.com/articles/drug-duo-turns-on-cancer-fighting-gene-in-kidney-breast-cancers
I have also looked up information about the PALB2 gene, which I had never heard of before reading the latest information in CANCERactive.
Apparently women who inherit one damaged copy of the PALB2 gene have double the risk of developing breast cancer.
Certain research seems to indicate that PALB2 might also linked to male breast cancer.
If you want more details the link is:
http://genome.wellcome.ac.uk/doc_WTX036544.html
It does look as though work is being done to help provide more treatment for TNBC which has been lacking in the past.
In addition to the two articles mentioned above, we have to remember the one that came from the Canadian Breast Cancer Foundation in June.
This was all about the identification of a protein critical to the survival of triple negative breast cancer (TNBC) patients. This breakthrough research has the potential to cure TNBC by targeting a protein RSK2, which eliminates TNBC cells completely. Apparently this study published in STEM CELLS medical journal reports that RSK2 inhibitors have the ability to kill all the cells including cancer stem cells, which give rise to cancer recurrence.
It is stated that approximately 400,000 women world wide are diagnosed with TNBC and is considered the most difficult breast cancer subtype to treat because of a lack of effective therapies.
The link is:
http://www.prweb.com/releases/CBCF/TNBCannouncement/prweb9576703.htm
Finally, in the iPaper of Thursday August 2nd 2012, on page 11 there is an article under Science, entitled Stem Cell Discovery can help to beat cancer. You might to read it. I want to read it more carefully before making any comments.
There is information on stem cells on the iPaper website.
Wishing you all well and a relaxing weekend.
Sylvia0 -
Hi Sam, Sorry for not replying sooner.
It must have been so tough caring for your son whilst going through treatment. I was so lucky that Damian took all of the responsibilty for Leigh. He doesn't live at home and we often get phone calls about lost keys, travel pass and bank card. Also he has depression and contrary to the typical assumption re aspergers and being loners he longs to have friends. Leigh has panic attacks and can ring in the middle of the night so it was such a help that Damian took over all of that.He has other on going issues and now feels that because I am 2 yrs since diagnosis that I can now get back to focusing on his problems... his words.
Coincidently someone that I worked with also had a late diagnosed Aspergian son and she was diagnosed with BC 6 months after me.
It makes you wonder and some people disagree but I do feel that stress can contribute to cancer.
Hoping that you have a good and peaceful weekend.
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Hi Sylvia,
I have taken notes from the links re new drugs and I am now trying to put together an understandable question for the oncologist tomorrow. I think that there will be a huge turn out and there will be people in treatment and also with re-occurrence who will be anxious to speak to him. He is my friend's oncologist and treats ovarian cancer so I hope that he will know something about breast cancer.
I had a frustrating day trying to contact my pain management consultant, there seems to be no letter of any description in my file relating to my first consult on 15 june and I cannot find out if he has dictated a letter to support my claim for invalidity.Admin staff are not covered when they are off sick or holidays and so I cannot speak to his secretary.
On a better note I met with work colleagues for lunch and spent time catching up and looking at photos. The normal world.
Watching Gardeners world , hoping to put some of it into practise when the rain stops!
Have a good weekend
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Hi Bernie ellen,
Just to say that I hope you have a great time with your friend. You give so much support and lots of laughter, something that is needed after the sad week.
Eat,drink and be merry x
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Hello Lint_Roller_Derby (Betty)
Thank you for your private meesage. I shall answer over the weekend, when I have a bit more time.
Thinking of you.
Sylvia
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Hello linali (Lindsay)
I was so glad to know that you have taken the trouble to take notes from the links regarding new drugs and I do hope that you will get some answers from the oncologist about the new drugs. They are already in use in the US at least, so let us hope that he knows about them. These drugs need to be used urgently if they can help TNBC patients. It is not right that these women are dying. I think what I would want to know is what are the side effects? These chemotherapy drugs cannot be the long term solution because of the toll they take on the body and all the nasty things that they cause.Since the oncologist is an ovarian cancer specialist, I would think he would also know about breast cancer and, hopefully, TNBC.
I can understand your frustration about the muddle with your pain management appointments and so on. There is no excuse for it and I would be very annoyed. It is appalling that everything seems to go on the slow during the summer, especially August. I would think this is not a good time to be ill or have any kind of problems. I would not want to be seen by an unsupervised junior doctor. They seem to be on their own during August in the UK.
I was glad to know that you had been able to get some relaxation by having lunch with your colleagues and looking at photographs. It is so important to get together with other people and try to feel normal.
Please tell us about any tips you learn from watching Gardeners World. It looks as though we are back to rain here as well.
I do not care what the experts say, or what the statistics are, I remain convinced that stress is one of the causes or risk factors in the development of breast cancer and other cancers. I do not see how anyone can assess other people's stress.
Best wishes
Sylvia0 -
Hello again linali
I have just looked up the side effects of romidepsin - Istodax on Drugs.com on romidepsin side effects. There is the usual list of the horrible side effects from which you can suffer with chemotherapy drugs, plus a whole lot more.
It is a wonder we consent to chemotherapy drugs if we know all these side effects. With the internet they cannot be hidden.
Have a look. The link is:
http://www.drugs.com/sfx/romidepsin-side-effects.html
I have also looked up decitabine - Dacogen
Again, there is a long list of side effects, many of them we already know and underlined is hair loss. This drug seems to have even worse side effects than the other one.
The link is:
http://www.drugs.com/sfx/decitabine-side-effects.html
It also says for both that not all side effects are necessarily reported.
Since these two drugs have to be used together, it makes me wonder just how a patient may end up feeling.
I shall be most interested to know what your oncologist says about anything.
Sylvia
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Hello sam52
I hope you have had a nice week with no major incidents.
I hope everything went well on your trip to Luton about yoour cat and hope you had good news from the vet. I know you are very attached to your cat.
Love
Sylvia
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Hello everyone
I have reread the article in the i Paper entitled "Stem cell discovery can help to beat cancer"."The conventional view of cancer is that it results from genetic mutations within ordinary cells that cause them to divide uncontrollably into a tumour that can then spread to other parts of the body. This suggests that all cancer cells are created equal with an equal capacity for dividing uncontrollably and an equal tendency to spread".
"However, three independent studies have now shown this to be a myth. The scientists found that there is a hierarchy of cancer cells within a solid tumour and at the top of the hierarchy are key 'cancer stem cells' that are ultimately responsible for causing a tumour to grow".
"This is the first time scientists have been able to demonstrate that stem cells exist within solid tumours growing in their natural state".
"Three independent groups found direct evidence for cancer stem cells in solid tumours of the brain, skin and digestive system They have published their findings simultaneously in the Journals Nature and Science".
"In the past we have tried to get rid of the entire stew of cells within cancer tumours. Now we know that it is a particular bit of the stew that we should try to get rid of".
My interpretation of this is that we should have more targeted treatment aimed at getting rid of the stem cells.
If you want more information the link to the Nature article is:
http://www.nature.com/news/cancer-stem-cells-tracked-1.11087
I would be interested in your comments. This thread works much better when it is interactive.
Best wishes
Sylvia0 -
Hello Sylvia
I am feeling a bit ghastly with bad cough, cold and laryngitis......will reply to your kind message when I have more energy!
With love,
Sam
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Hi Linali
Thanks for your post......I will reply to it when I am a bit better.....
Sam x
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Hello sam52,
I was sorry to learn that you were not feeling so good and I do hope that you will be feeling better soon.
I know that you lead a busy life, so you have probably got run down. Take great care. Echinacea tincture alwys does the trick for me. I also take it when I have low energy. I have been taking some for a few days.
Thinking of you,
Love, Sylvia.xxx
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Hello FernMF,
I do so hope that you are feeling a bit better five days after your first chemotherapy treatment.Are you working while you are having treatment? If you do not feel up to it I would take sick leave. You cannot push yourself on chemotherapy and you have to be careful about not picking up infections.
Thinking of you,
Sylvia.xx
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Hello Dulcie,
I hope you are having a good weekend. I shall be thinking of you on Tuesday when you get the results of your scan. I hope your OH gets good news from the haemotologist this coming week.
With best wishes,
Sylvia.xx
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Sylvia, and others - day three and four were NOT good for me, I am such a big baby . . . but day 5 was o.k. and today, day 6, seems to be MUCH better. walked 2 miles (albeit slower than normal) and now off to church. If it stays the same as now, I'll be going back to work tomorrow for the two weeks in between . . . . God is Good . . .
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Hello FernMF,
I think you are doing very well and I am sure that is what all those viewing this thread think. The first few days are usually the worst. I think you have done very well to walk two miles. Well done. I hope all will be fine if you go to work tomorrow.
Wishing you well,
Sylvia.xx
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Day6 - was a good day - made a 2-serving peach cobbler and fought off my hubby for my fair share . . ate home grown corn, tomatoes and slices of turkey for dinner . . . ate a grilled chicken sandwich with home grown tomatoes for lunch . . . feel more normal now that I am over the stupid STEROID "overdose" . . . I hope maybe they will give me less the next time . . . 6 of 84 days done - HALLELUJAH, God is Good. Off to work tomorrow . . . THANKS ALL FOR YOUR ENCOURAGEMENT! Hope this week is predominantly a good one for all of you!!!
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Hi Sylvia and everyone else,
I hope you are all well.
Sorry, I havent had a chance to reply sooner. Having the littles at home is definitely keeping me busy! We also had them both Christened a couple of weeks ago, which has taken us years to do as one set of their godparents moved out of the country not long after my eldest was born and we havent been able all get together at a time when the church was also available since! So we had a lovely big party afterwards for which friends and family all mucked in and contributed food, helped with decorating the hall etc
Sylvia, you asked how old they are - I have two girls aged 4 and 7 (2 and 5 when I was diagnosed). They have been amazing at with coping with everything, although my eldest is prone to anxiety based around Mummy being ill. We have a few good techniques we have learnt along the way though, and I am hoping some of these will always stay with her (relaxation, meditiation, drawing her fears etc) in case she is always just going to be prone to stress. I really do agree with everyone on here that stress is a major factor that cannot be measured or fully understood in the individual, which contributes to illness. I certainly had a very busy and stressful life before my dx meant I had no choice but to learn to slow down!
Sylvia, you also asked a bit about my dx. I had a lumpectomy, followed by a mastectomy as the tumour was large (6.3 cms), then an extra op to deal with a haematoma which built up about a month later. My immume system then went very low, my liver enzymes went crazy and I had a chest infection for about 6 months which delayed the reconstruction. I had my final op (hopefully :-) ) 3 months ago, so the pain I have now I think is just everything settling down and healing. In fact, I saw my onc today, and he delayed my routine mammogram for a couple of months to let me heal first. I was quite glad he did, although I would have tried to be brave if I needed to be!
I didnt have chemo or radio as we caught the tumour before it became invasive, so effectively I didnt need to and have just had surgical treatment. I'm based in Hampshire, and was able to go private for my treatment. I think the overall experience of hospital stays and no real waiting times has been great, however I have kind of missed out on contact from all the support from the main hospital and the Macmillan centre, although I have attended a couple of great courses they run.
Fern, I hope you are feeling ok today. You are certainly not a baby, you are clearly very brave and even if you wanted to be a baby you are allowed! And Dulcie and Sam, and everyone else, I hope you are ok
Best wishes for a peaceful week everyone0 -
There is a very interesting edition of Horizon on BBC2 at the moment. Part of it concerns a growth factor called IGF1. Eating a lot of protein causes cells to divide and therefore damaged DNA doesn't get repaired. By fasting and eating less protein it is possible to dramatically reduce IGF1 and cells go into repair mode.
I haven't explained it very well but if anyone gets a chance to watch it I think it is well worth it.
Michael
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Thanks - just finishing up a WHOLE DAY AT WORK - my first since chemo - and I must say I am exhausted - 30 minute drive home, then into comfy elastic pants and dinner and then NOTHING. The "aches" have started from the nuelasta - mostly in my hips so far . . . fun fun. . . . all things considered though, I am grateful . . . . THANKS ALL.
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Hello FernMF,
I was so glad to know that everything is going well. If you keep eating good meals as you have just done, I am sure that you will make good progress. Keep it up.
I hope your days get better and better, so that you are in good shape for the next round.
Thinking of you, Sylvia.
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Hello chatterbox2,
I was very interested in your post. I missed that Horizon programme that you mentioned, but I shall have a look at it this week and get back to you with my comments.
I was interested in knowing that Insulin Growth Factor 1 had come up. In 2005 I asked my breast cancer surgeon about what she thought might be causing breast cancer and she said she thought one of the causes might be dairy products that contain IGF1. I do not have any dairy in my diet. I think the growth hormones in meat might also be a cause.
The western diet is far too heavy on animal products and protein. Theyshould be a garnish, not the main part of a meal.
I hope things are not too bad with you and that the thread is helping.
Warm thoughts, Sylvia.
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Hello- Iz and- Lys MUM,
It was so nice to hear from you. I can imagine that your young children are keeping you busy.
It sounds as though you had a really nice get together with you friends and family.I bet your two daughter are your pride and joy. It must have been so hard for them seeing you unwell and going through treatment. It sounds as though you have been so helpful with showing your elder daughter techniques to help with stress.
I do not think bad stress is of any use to us. Even with what is termed good stress, we do not know what it is doing to us.
I was interested to know about your diagnosis. Like me, you had a large tumour. It sounds as though you had a very rough time with that haematoma and then a chest infection for six months, Thank goodness that is all behind you now. It probably was for the best that it delayed reconstruction as it gave you more time to heal.
You said that you did not have chemotherapy or radiotherapy because the tumour had not become invasive. Am I right in assuming then that you were classified as DCIS with a large tumour or is that wrong? What stage and grade were you? It all gets a bit confusing.
I was interested to know that you had had private treatment. What kind of support did you get from the private hospital? I would be interested to know what criteria was used to classify your condition as non-invasive. Was it because no lymph nodes were affected. I can understand that it was probably a lonely journey for you without the support of the main hospital and the Macmillan Centre, but al least you did not have to endure the long months of chemotherapy and the daily radiotherapy, but it is all behind you now.
Enjoy the holidays with your children. The new school term will come round soon enough.
With very best wished,
Sylvia.0 -
Hello Dulcie,
I have been thinking of you today and hoping that you had good results from the CTscan. I hope that your husband has got to see the haematologist and that he has good news.
Keep looking forward.
Fond thoughts, Sylvia.
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Hello linali,
I hope you had a happy and restful weekend and that the week will be good to you.
Kind thoughts,
Sylvia.
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Hello sam52,
I do hope you are feeling better today. The weather will not be helping. Pehaps we shall have a good September. Have you been watching the Olympic Games?
Thinking of you,
Love, Sylvia.
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