Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mumtobe,
Thank you for your post. I was glad to know that you do have other medics looking out for you other than your oncologist. I think we learn to read our own bodies and we know if something is not right and we take action. It never hurts to be assertive and push for what you want. We have to remember that the medical service belongs to us, the people. We pay for it and it does not belong to the medical experts. They are there to serve us.
When you feel like eating some meat, why not just eat it. Try organic if you can, as you are doing. We keep getting different information about our food and what is good for us and what is not. Remember, a little of what you fancy does you good and everything in moderation. Yesterday I saw on one of the newspapers here that red meat is good for you. They could be pushing it because of the horse meat scandal but it does contain iron, heme iron, which is supposed to be more absorbable than other iron. Eggs were also once a villian but now they are supposed to be good for you. I do eat organic free range eggs.
Please keep in touch and give us details of your radiotherapy.
Let us also keep talking about nutrition. We are all interested in it on this thread.
Love.
Sylvia xxxx
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Hello Michael,
I have just read your post and was sorry to hear that you are facing treatment once again. I know that all of us on this thread will be keeping our fingers crossed for you.
I do hope that all will go well on Thursday morning when you start chemotherapy. With the combination that you are having, I hope they really slay this villain. I have looked up this combination and seen that it is rituximab (monoclonal antibody) – cyclophosphomide – hydroxydaunorubicin (what we know more commonly as doxorubicin) – oncovin (vincristine) and prednisone or predisolone (a steroid).
I was wondering whether you have had some of the drugs in the past even if not all together.
I think vincristine has been in use for non Hodgkin's lymphoma for quite a long time. I remember a friend of ours when we were living in Canada had vincristine for non Hodgkin's lymphoma about twenty five years ago. His lymphoma completely disappeared.
I was glad to know that you had updated the Janette Collins website and I shall certainly have a look at it later on today.
Good luck for today with the bone marrow biopsy. I hope you will be alright.
Look after yourself and keep looking forward. Do you know how long you will be on chemotherapy? Keep posting to take your mind off things and we shall all support you any way we can.
With sincere best wishes.
Sylvia.
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Thank you for your good wishes Sylvia.
The bone marrow biopsy wasn't too bad, a bit uncomfortable a few times, but doable. I also had a heart echogram.
I have had all of the drugs before apart from doxorubicin. I hope that I will get a good result but apart from sct treatment there is no hope of wiping out my NHL for good.
Michael
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Hi Sylvia,
Thanks for checking in. You asked what ki67 is. Here's my understanding:
According to what I've read, Ki 67 is a protein (antigen) with a critical role in cell division. The ki67 score indicates a tumor's aggressiveness - specifically, cell proliferation. "High scores - greater than 20 percent - mean the cancer cells are growing and dividing rapidly." Proliferation is only one way to measure aggressiveness. It is one of three measures that go into determining the "grade" of a tumor, with 3 being highest, as you know. My ki67 score was on my baseline MRI report. Not all labs report it.
Here are a couple of links:
breastcancer.about.com/od/tumor markers/f/ki67.htm
community.breastcancer.org/forum/96/topic/777784-specialk
Apparently, a high ki67 score is generally an indication of poor prognosis, BUT it is also correlated with a good response to neoadjuvant chemotherapy, just as grade 3 tumors typically respond better. Those with a high ki67 score are more likely to have a pathological complete response (pcr) after chemo ( ie no residual invasive disease), which indicates a good prognosis. (Presumably, a pcr suggests that if the tumor was killed by chemo, so were any cells that had been circulating in the body...no spread).
I am doing pretty well after BMX with expanders on February 12. The PS is doing the fills now and I should start radiation in three weeks or so. I don't have the radiation plan yet. I did my chemo before surgery.0 -
Correction: My ki67 was on my core needle biopsy report, not my MRI report.
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Hey "mama" Sylvia: I read these threads nearly every day - but don't have much wisdom to offer. My hair is about 1 1/2 long and curling - I had thin, fine, straight hair before (and had colored it for so long I did not know the "real" color) - my hair now is dark and white (hairdresser says it's "slate")
I go tomorrow morning early for the first of many "three-month-check-ups" . . . and your previous post about what the check-up appointments entailed for you was very helpful . . . I'm ready for the "feel-up" and questions . . . do not expect anything crazy to occur.
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Hello Michael
Wishing you all the best for tomorrow and hope that the chemo is as side-effect free as possible.
Sam x
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FernMF - let us know how your check up goes, I'll be curious to see what i'm missing out on! Best of luck x
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Sam52
Thanks for your wishes. I am wondering what dose of steriid I will be getting. If I remember from Janette's treatment, breast cancer patients only get a day of the drug whereas lymphoma is 5 days. I am afraid that they make me quite manic. Normally I am a very very quiet person. Top me up with steroids and I never shut up. If my mouth isn't employed talking it is eating.
Michael
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Can anyone tell me what creams (if any) they used during radiation treatment. I just read about a woman in Germany having radiation and they do not recommend any creams or lotions at all. And no showers. I do agree with the no showers - I plan on having baths from the waist down and just sponge bathing as necessary above the waist. I am still unsure as to what kind of creams I will use - my cancer agency does not recommend oil based anything - only water based lotions or creams.
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Hello Ladies and Michael. Had an excellant weekend with my Belgian friends. Will take me a while to catch up.
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Michael, Sorry that your results were not the best. Thinking of you.
Good morning Sylvia, just reading upon your, as always, informative posts. I can never understand the way the advice on what is safe to eat and drink is always so conflicting. It is no wonder people are confused.
With regard to the Health Care system in southern Ireland - it is means tested under very strict guidelines. Only in extreme circumstances would you qualify for a Medical Card. i.e Cancer and Diabetic treatment, Disability Allowance and in receipt of Social Welfare. This then entitles you to free Health Care but with payments of one euro fifty per prescription items.
Outside of the criteria all Health Care has to be paid for. The majority of people have health insurance, at a very high premium.
If you are in a public ward under the care of a consultant for treatment and you remain overnight, you are receiving in-patient services.
If you are admitted to the hospital under the care of a consultant where you do not require the use of a bed overnight and your discharge from hospital is planned, you are receiving day services.
The charge for in-patient/day services is €75 per day up to a maximum of €750 in any 12 consecutive months.
If you use accident and emergency services without being referred there by your family doctor (GP), there is a charge of €100. There is no charge if you are referred by a GP.
The €100 charge also applies to out-patient services.
The charge applies to the following public facilities:
- Emergency departments
- Accident and emergency departments
- Casualty departments
- Minor injury units
- Urgent care centres
- Local injury units
- Any other facility providing similar services
Private patients in public or voluntary hospitals
If you are in a private bed in a public or voluntary hospital, you must pay for your maintenance at a rate set from time to time. The following charges are in addition to the public hospital in-patient charges of €75 per day up to a maximum of €750 in a any 12 consecutive months.
Maintenance rates from January 2012 are:
Hospital Category Private Semi-private Day-care HSE Regional Hospitals and Voluntary and Joint Board Teaching Hospitals €1,046 €933 €753 HSE County Hospitals and Voluntary Non-teaching Hospitals €819 €730 €586 HSE District Hospitals €260 €222 €193 The cost for the G.P. is 35.00, this is before the consultation even starts.
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Hello Michael
I hope everything went ok today and you are not feeling too manic! I had to laugh at your comment about either talking or eating when taking steroids.....I think I am afflicted with that naturally!
I can remember that when I had chemo( in 2002),I had steroids for several days afterwards, and in the case of Taxotere, for a few days before as well. I decided to taper them off gradually, rather than just stopping abruptly, as otherwise I went from feeling good to feeling crap overnight.
Wishing you all the best,
Sam
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re: Steroids before during and after taxotere/cytoxan - I had a very strong (not prednisone) steroid before during and after round 1 . . the steroid side effects were horrible - agitated, could not sit, sleep, stand, walk, talk, NOTHING without changing position/activity every 10-30 seconds . . . after speaking with the oncologist, getting ready for round 2, and reporting that prednisone and I "played well together", the oncologist switched my before and after steroid to prednisone, higher dose than what I normally rec'd for those pesky poison ivy bouts, but not bad . . and the day of chemotherapy, the oncologist GREATLY reduced the strong steroid . . . made ALL THE DIFFERENCE in my ability to cope . . . .
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re: my first 3-month follow-up appointment this morning . . . blood draw was 5 viles . . . the BC "cancer marker" takes a day, so I don't know the result of that . . asked the oncologist what my "score" was previously, and he said, "you came to me after surgical removal of cancer" - you had no score. He said the other blood tests that are done/ongoing are for organ function. The results are an indicator of "potential" trouble and he looks for "change" from previous test results. "We will just watch the progression, over the months." Again, all these indicators are just "potential" . . . nothing set in stone, not even the BC cancer marker. SO, 1st follow-up appt. down with no problems or concerns. Quick visit. I am scheduled for a CT (with contrast, and drinking "that stuff") before the next 3-month check up. Oncologist says every six months on the CT for "awhile".
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Hello Michael,
I was glad to know that you got through your bone marrow biopsy with just a bit of discomfort and that you found it doable. I hope you get good results from the heart echogram.
I hope you get on alright with the doxorubicin. As you know, doxorubicin and epirubicin are very common drugs for chemotherapy in the treatment of breast cancer. I had epirubicin and I remember that it was a red colour and it turned your urine red.
Do you have any chance of getting stem cell treatment for the lymphoma? I do not know how much that is being used in the UK, but there has been a lot of talk about it.
How are you feeling about all this? Do you have friends and family to support you? You certainly have friends on this thread and we hope we can give you a lot of support.
Remember to try to eat very healthily and do all you can to keep your immune system as strong as possible.
Thinking of you and wishing you all the very best and I shall be thinking of you on March 12th.
Fond thoughts.
Sylvia
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Hello placid44,
Thank you very much for your most informative post and for the details about ki67.
I do not know whether patients in the UK are now given this information but it was not mentioned to me at all back when I was diagnosed in 2005.
Thank you for the links.
I was glad to know that you are doing well after your bilateral mastectomy with expanders.
Let us know when you have your date for radiotherapy so that we can support you through it and you can let us know how you get on.
Sending you my best wishes.
Sylvia xxxx
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Hello FernMF,
It was nice to hear from you and to know that you are still reading the threads. You can pop in to say anything you like and let us know what you are doing in your everyday, back to 'normal' life. Talking about things other than cancer is good therapy.
I was glad to know that your hair is growing. I think the dark and white happens to a lot of women. My hair is completely normal now and is back to its normal natural colour, brown, hardly any grey.
I hope all goes well with your first post treatment check up. It will be interesting to compare it to my experiences here in the UK.
Best wishes.
Sylvia xxxx
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Hello adagio,
When I was going through radiotherapy I was advised to use aqueous cream for washing, but not to use anything the morning of the radiotherapy treatment. I found aqueous cream kept my skin well moisturised and I had no problems with my skin during my three weeks of radiotherapy, which included boosters. I do remember having an appointment with a nurse when the marking up was done, and I was given a tube of cream to use if I needed it. There was something in it that I did not like, so I never used it. I do know that aloe vera cream and calendula cream are supposed to be very good for helping any skin problems. I would go with what you are advised by your specialist.
Let us know how you get on.
Best wishes.
Sylvia xxxx
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Hello BernieEllen,
Thank you for your post and all that information about the health service in Ireland. Thank you for the photograph and I am glad that you had a good time with your Belgian friends.
I noticed that the photograph was taken outside a Harley Davidson outlet. They have gatherings here in Exmouth and they are very big gatherings. They usually meet up at a café, the Harbour View, on the seafront. Am I likely to see you there one day?
It is true about all the confusion over food and drink. I think all you can do is eat a little bit of everything in moderation.
I was most interested in what you had to say about the Health Care system in the Republic of Ireland.
I am very much in favour of socialised medicine, funded by tax, but free at the point of delivery, but I also think that it may get abused in this country. I do not think a lot of people realise how much it all costs. I think it is in trouble at the moment and do not know what will happen in the future. Here in the UK prescriptions are free for over sixties and those on certain benefits. Other people have to pay for their medication on prescription and have to pay per item, but there is a fixed payment (about £7.50).
I did not know that health care in Ireland was insurance based.
Here in the UK you can just turn up at A & E and it is always an absolute zoo. You can also turn up at Minor Injury units as well as NHS Walk-In clinics.
As I said, I think the system gets a bit abused here and I also think that GPs dish out pills too easily, and that patients tend to go to their GPs to easily.
I hope all is well with you.
Best wishes.
Sylvia xxxx
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Hello everyone,
Friday has rolled around again and we have some rare sunshine here in Exmouth but it is still cold.
I have been glad to see the thread running so smoothly this week and happy that those who need it are getting support, information and experience of others.
I was glad to see linali back on the thread and I do hope you have had a good time in the Lake District and have been able to switch off a bit and relax.
We have not heard from Carolben in South Africa, but I do hope things have been going smoothly with your chemotherapy treatment and hope you will be able to relax this weekend.
Sending best wishes to all our American friends and InspiredbyDolce, I hope all goes well on March 13th.
In Germany, best wishes to susaninicking and Cynthie and wondering how you are getting on.
To PeggySull, you are near the end of your chemotherapy treatment and hope all is well.
I hope I have not missed out anyone and hope you all have a very good weekend.
This has been a strange week for me. My dear uncle of 92 died quite suddenly on Tuesday. He was diagnosed with mesothelioma (a form of lung cancer caused by exposure to asbestos) a year ago and told he had two months to live. Until last week he was fine, had had no treatment, but suddenly took a turn for the worse. He died peacefully in a hospice just two days after he was admitted. He had lived a long and happy life, free of illness until a year ago when exposure to asbestos over fifty years before came back to haunt him. He was the last of my uncles, on my mother's side, from a family of seven brothers and two sisters. It is like the end of an era for me.
That is about all for now. Thinking of all of you and wishing everyone all the very best.
Sylvia
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Dear Sylvia, so sorry for the loss of your uncle. May he Rest in Peace.
Wishing you a quiet and peaceful weekend.
Bernie.
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Hi Everyone,
I wanted to post this - it is Dr. Oz's 3 Day Detox. It's 3 blended smoothies, but you drink 4 of them a day. For the 4th one, you choose your favorite. But the interesting thing he said is that blended drinks are very nutrient, as the nutrients get straight into your system. He said just for overall health, have 1 as a meal replacement each day. I'm posting this because this is one of the simplest detox regimes I've ever seen, and I've never done a detox because they all seem so complicated or you have to take some detox pill thing to start. This is all natural. He includes the 3 day shopping list at top so you know what to buy. He also suggests 1/2 multivitamin and probiotic supplement in the AM and then 1/2 multivitamin and Omega 3 supplement in the PM.
I am currently looking for a great veggie smoothie recipe. I just now discovered that I had been using the wrong button on my blender all these months, creating the lumpy kale smoothie. I finally found a different button on the blender, and I'm happy to report that it's been "smooth" smoothies from here on out. LOL
Here is the link. http://s.doctoroz.com/sites/default/files/dm_uploads/4_055_3DayDetox.pdf
I hope everyone is doing well - I will log back on and catch up with all of you and your postings. I just wanted to share this with you, while I was thinking about it. As always, check with your medical team on nutrition and health!
Have a nice weekend!
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Good evening Sylvia
I am sorry to hear about your Uncle.
I don't know how likely I would be to get an SCT but in Heamatolgy it is an extremely common treatment. It sounds quite a dramatic treatment but as I understand it, a fairly routine procedure. I know of someone who was back at work within 2 weeks.
I don't really know how I feel about this return of my Lymphoma. While it was purely indolent I was looking to a lengthy future living with the disease but transformation kind of puts a time limit. The longer one has fNHL the greater the chance of transformation.
I am very grateful for the friendship and support I have in this group. I find that it is difficult talking to family and friends in an open way. Somehow the conversation is loaded with expectations, if you know what I mean.
I hope you have a peaceful weekend.
Michael
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Hello BernieEllen,
Thank you for your kind words regarding my uncle.
I am having a quiet weekend and trying to rest my sprained ankle, which is taking a long time to heal. I have been relaxing on the sofa, reading, watching some of my favourite programmes and listening to some music.
I have been reading a book by Patrick Holford and Jennifer Meek, entitled Boost Your Immune System – the drug-free guide to fighting infection and preventing disease. It is a very interesting book and very useful as a reference book. I am sure it would of interest to all of you viewing this thread. It has some good questionnaire and is very easy to read.
I have also been reading a book about the French writers and philosophers Jean-Paul Sartre and Albert Camus. They were very much part of my university studies years ago and probably had quite a lot of influence on me. The book is entitled Sartre Vs Camus – The Boxer and the Goalkeeper by Andy Martin.
I have also been listening to a CD recently released called Desert Island Discs – 40 Classical Castaway Favourites. It is consists of three CDs.
On the television today I watched Dateline London for half an hour. It is a very serious discussion programme of current affairs with a panel who really know what they are talking about. I have also listened to Any Questions, followed by Any Answers on BBC Radio 4. It is another good discussion programme on current affairs and comes from a different part of the country each week. This week it was from Brighton in Sussex. I am always more impressed with the non-politicians on the panel.
I hope you have a good weekend.
Best wishes.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
Thank you for your interesting post about Dr. Oz's 3 Day Detox. I am sure everyone on this thread will find it interesting as we are all interested in healthy nutrition and how to keep as well as we can by eating properly.
I can understand that blended nutrients are a good way of getting nutrients straight into your system. I am sure that this way of getting nutrients must be beneficial especially when you are going through cancer treatment and may not have much of an appetite for eating solid food.
I shall certainly have a look at the link. I already have a multivitamin/mineral supplement on a regular basis and have recently gone back on the Omega 3 fish oils. I am now taking each of these supplements daily.
I am glad you found the right button on your blender for making smoother kale smoothies!
I hope you manage to catch up on the posts, so that you know what is going on with everyone.
Carolben in South Africa, as you know, is currently know is going through more chemotherapy for metastases to the lungs, and she is a great one for making smoothies.
Remember to put watercress in your smoothies, as it is supposed to be one of the best super-foods and is not always easy to eat.
You might find the following recipe interesting. I found it in the book that I mentioned in my previous post to BernieEllen, Boost Your Immune System.
Recovery Soup.
This soup is blended raw and then heated to serve (do not boil). Serves one.
Two organic carrots, washed and cut into chunks.
Three heads of broccoli, washed and broken into florets.
75 grms (3 ounces) tofu.
100 mL (4 fluid ounces) soya milk.
Two teaspoons Vecon or Bouillon vegetable concentrate.
Tomato paste, spices or herbs to taste.
Blend all the ingredients together in a food processor. Serve hot or cold with oat cakes.
I hope you are having a good weekend.
Love.
Sylvia xxxx
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Hello Michael,
Thank you for your post and for your kind words about my uncle.
I was very interested to know that SCT is a common treatment in Haematology and if it can help you I do hope you will be able to obtain it. It never hurts to push with the NHS. It does sound quite dramatic and I had no idea that it was a routine procedure. If you can get back to work within two weeks it does not sound as though it can be very damaging.
I do hope you will be able to remain optimistic and strong about this return of lymphoma. I can understand that it must be a disappointment, but tell yourself you will give it all you have got. Can you explain transformation as opposed to indolent for us, so that we know exactly what is happening?
You are so welcome to all our support and friendship. I can understand, and I am sure all of us on this thread who have had to face this life-threatening disease, that will be for ever lurking, can understand how you cannot speak openly to family and friends. I think they cannot understand that cancer is not a disease from which you permanently recover. They watch you go through treatment, survive, and have no visual evidence of disease, so that is it, you are done and dusted!! Family and friends are always asking me how I am and I just say that I am fine. In depth dialogue is useless.
Please feel free to post about whatever you like and vent your feelings here.
My thoughts will be with you on Monday, when I know you will be facing another difficult day.
Fond wishes.
Sylvia.
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Hello lynnlex,
I have not heard from you since I answered your PM so I am just posting to say that I hope what I wrote helped in some way with all you are going through.
Please do not be too shy to post. We are here to help, comfort, support and provide any information we can.
Thinking of you.
Best wishes.
Sylvia xxxx
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Hello again, Michael,
I have just been having a look at the Janette Collins Foundation and wanted to say that I think you have done a very good job. Well done.
I was looking in particular about the latest news on TNBC and was reading through the 2012 information coming out of the San Anotonio Symposium. I was interested in the mention of the JAK2 gene about which I know nothing. Does anybody have any comments?
I noticed the name of Patricia Prijatel and her book Surviving Triple Negative Breast Cancer. I have not read this book, but I did watch her video on the web some months ago. I think her book is based on that.
There was mention of her blog Positives about negative. I was wondering whether you follow this blog. Do you know anything about her magazine, Cover to Cover?
From this 2012 information it does look as though they are slowly making progress with TNBC. It looks as though there might be quite a few different kinds, some aggressive and others not that aggressive.
I was also interested in the information about the androgen receptor and similarities between TNBC and prostate cancer, which may indicate that some of the drugs used for prostate cancer may help with TNBC. I was particularly interested because the husband of a friend of mine recently went through prostate cancer treatment and asked me to help him through with the chemotherapy and radiotherapy. He has come out of all this treatment and is currently fine and just has to have some targeted injections and regular check ups.
I hope you are managing alright this weekend and doing something you enjoy.
I hope all those viewing and posting on this thread will take the time to look at the Janette Collins Foundation out of respect for you and to honour Janette, whose photograph shows such a lively face.
Best wishes.
Sylvia.
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Just a quick note:
Patricia Prijatel is very quick to answer e-mails. I e-mailed her a question this week, regarding something she said in her book, and she e-mailed me back within 24 hours. So if you do have a comment for her, drop her a line. If you don't have her e-mail address, PM me and I will send it to you!
Have a great day everyone!
- Helpful info about Triple Negative from a TNBC survivor (Patricia Prijatel): http://hormonenegative.blogspot.com
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