Calling all triple negative breast cancer patients in the UK
Comments
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Maria-Thinking of you! What surgery did you decide on?
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Maria - all the best for tomorrow
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Hello bak94
I am so glad that you will be getting the ssdi. No one should have to worry about money when they are going through cancer treatment or any other of the degenerative diseases.It sounds really lovely where you live.
I am so glad that you are looking at the CANCERactive website and in particular the active8 part. I really believe that we have to help ourselves with breast cancer.
You might like to sign up for the free e-mails from this site. I signed up and I have just received my first e-mail with some recent information about cancer. I do not know how to paste these e-mails onto my thread.
Briefly, there is information about cannabis and its use in cancer treatment. Apparently, there are over 250 scientific research papers on the web on the subject of cancer and cannabis from Harvard to California cancer centres. There is research on the cannabinoids and cancers like breast cancer. Cannabis contains 21 different cannabinoids, some have absolutely no hallucinogenic powers, but they are never the less banned!
There is also information about hyperbaric oxygen, which is apparently being used to reduce the damaging side effects of radiotherapy.
There are lots of tips about how to improve radiotherapy, during which you need to manage your body. I was interested that mistletoe was mentioned, and I took this from diagnosis in 2005 to the summer of 2009.
There is far too much for me to type out, but I do feel that you would find this newsletter very interesting.
Christina1961: I thought you would find the CANCERactive site interesting and I think you would be most interested in the newsletter you can sign up for.
Thank you very much for the detailed description of where you live. You obviously know a lot about where you live and it sounds amazing.
I hope you week is going well.
Sam52: Thank you for your post. It is most appreciated, as I know you are very busy. Thank you for the advice about the DEXA scan. It will be two years on November 11th since I had the parathyroidectomy, so perhaps my consultant will make me wait for a DEXA scan. I also think that the radiotherapy and chemotherapy will have affected my bones. I do hope they will slowly improve. I think they may have affected my mouth as well, as I do seem to have a lot of problems with my gums.
I do hope all is well with you and your family and that work is going well.
Maria_Malta: I just wanted to wish you all the best for tomorrow. I realise that your mind must be in turmoil at the moment. Just remember that after the anaesthetic, the next thing you will know is that it is all over.
Mccrimmon324 (Heather), BernieEllen, and Suze35: I just wanted to say hello and let you know you are in my thoughts.
To everyone on the thread, including those just looking, if you do one useful thing this week, sign up for the CANCERactive newsletter and keep reading that site.
Take care
Sylvia0 -
Suze35,
I am thinking of you and hoping that all goes well today.
Best Wishes,
Sylvia.
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bak94, i know it's serious but you so right to focus on yourself sweetheart.
Best wishes to all
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Hello everyone
I do hope that the week has not been too bad for all of you and look forward to hearing from you with your various experiences with your different stages of treatment. I am sure we are all thinking about Maria_Malta and hoping that all has gone well with her surgery. She may well still be in hospital but she could be home. Here, in the UK, for a mastectomy the average stay seems to be about five days, but I do not know if this is the same for a bilateral mastectomy. Best wishes Maria from all of us.I am giving you the link for another interesting part of CANCERactive, entitled "20 Things you need to know about Radiotherapy" (This article aims to improve the success of your radiotherapy treatment, while reducing the levels of side effects).
It explains what radiotherapy is and 20 things that you need to know. The link is:
http://www.canceractive.com/cancer-active-page-link.aspx?n=258
I think it is very important to read the 20 things and if I were you I would print out the three pages so that you have them as a reference.
I am also posting another link on About.com Breast Cancer entitled General Side Effects - Chemo and Radiation Side Effects - Treatments. Chemotherapy and radiation can cause side effects that can have an impact on your skin, hair, mucous membranes, energy levels, appetite and ability to think clearly. Learn how to take action and get proper treatment.
I think that everybody going through treatment should read the two pages about all these possible side effects and how to deal with them.
Again, if I were you, I would print this out for continuing reference. With this article and the one from CANCERactive you will be well prepared for radiotherapy and chemotherapy and will have lots of information about dealing with the side effects and products that might well prevent some of them or at least alleviate them.
It would be interesting if we could discuss some of this information through posts and discuss some of the products, especially if some of you have already used them.
Finally, I would be interested in knowing if any of you have developed gum problems since having breast cancer treatment. We all know that chemotherapy and radiotherapy can cause problems with the mucous membranes and cause mucositis. There are mouth rinses that can be used to alleviate this, especially during chemotherapy and can help with the discomfort of mouth sores, dry mouth and pain in the gums.
I am particularly interested in pain in the gums, because, although I had problems with my gums before treatment, they seem to have deteriorated very rapidly in the years since treatment.
This week, I found something on the internet that aroused my curiosity. It was an article entitled "Gum Disease and Breast Cancer. Is There a Link?". The article is very recent, September 19th 2011. This is under the title Dr. Igor Ochev's Blog and the link is:
http://ochevdds.wordpress.com/2011/09/19/
Shocking. One word that sums up the latest study conducted by the Karolinska Institute in Sweden. According to their research, chronic periodontal disease indicated, strangely, by missing molars, appears to be associated statistically with breast cancer.
This is also a very interesting article.
Special hellos to BernieEllen, Maria_Malta, sam52, Suze35, bak94, christina1961 and mccrimmon324.
I hope you all have a good weekend.
Best wishes
Sylvia0 -
Hello Suze35,
I just wanted to say that I am glad to know that you have started the trial and can understand your disappoinment that you are getting only the Abraxane, but at least you know that they will switch you over,if necessary.
I cannot believe the time you had to wait to get the chemo. You must have been so exhausted!
I am so glad to know that you are getting some financial aid. Cancer is bad enough without having to worry about financed.
Best Wishes,
Sylvia.
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Hi Slyvia, always had trouble with my gums, now matter how well i looked after then. Runs in the family - my niece has been having trouble since she was 18.
Half way through rads - bit tender and red.
Off to cork for the weekend. Good weekend to eveyone.
Thinking of you Maria_Malta
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Syliva - thank you so much for the good thoughts. This is such a rough ride we are on, the stupid little administrative stuff we have to deal with can sometimes be the last straw. They were lucky I'm normally a laid-back person!! But onwards and upwards - at least I will get the trial drug at some point, which is better than a lot of other clinical trials - and my MO is hopeful that I can get some regression with the Abraxane alone first.
On a good note - the SEs this first go around have been so minimal. I know that will change over time, but it almost feels like I didn't receive any drug!
bak - hang in there - think about the day when you get to go OFF disability because you are doing so great! And use it while you can, you have earned it and deserve the break.
Maria - I hope the surgery went well!
Bernie - I have to say, you have an amazingly lovely home. How wonderful it must be to enjoy such a peaceful place. Just lovely.
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thanks to all for kind thoughts. posting from hospital on v awkward sceen. had op posted a few details on october surgery thread. should b home on monday.
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Suze, I am so thankful to get on ssdi before my surgery, that takes so much stress off of us financially. I will try to work a few hours during rads, but after rads I have to have a hysterectomy, so it will be very helpful then too. The ssdi website says I can work and make up to 720$ a month, and then they have a worker trial where you can make as much as you can for 9 months out of the year with full ssdi benefits, and then a 36 month trial period that if you need to go back on ssdi because you are having a tough time you do not need to reapply. I am going back to school in Jan. so working less will be good and I am trying to find a career without all of the chemicals and less time on my feet. If all goes well, I do want to go back to working full time with benefits, but I don't want to stress myself out about it!
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Hello Sylvia
Thank you for your good wishes. I hope you have a good weekend too.
Have you read the thread on BC.org linking root canal treatment and breast cancer? It seems there is some correlation there, too. I also have had gum problems, particularly since chemo, when my mouth was a real mess.
(breast cancer and gum disease, breast cancer and root canals, breast cancer and parathyroid disease......whatever next?)
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Hello BernieEllen
Thank you for your post. I was interested to know that you have always had trouble with your gums. I was also interested to know that you wrote that it runs in the family. I picked up on the fact that you mentioned that you have always had a problem despite looking after your gums. I had problems before my breast cancer treatment, but it has definitely got worse after treatment, and I have had quite a few discussions with my excellent dentist. He told me that gum problems, known as periodontal disease, is often not anything to do with how well you look after your teeth and dental hygiene, but to do with a sensitivity to certain bacteria in the mouth. He told me that all of us have the same bacteria, but, for some reason, many people cannot deal with some of these and you end up with problems. Treatment by a periodontist can help for a time, but is not always successful. I have been reading about the Behrens Dental Practice in London, that says it can cure periodontal disease through laser treatment. I suspect that it is all very expensive. I have just sent the information to my dentist, along with a letter expressing my concerns about possible serious health problems, especially cardiovascular ones, due to gum problems.The long term effects of breast cancer treatment and possible cardiovascular problems are enough to worry about in addition to problems and side effects as a result of gum problems.
The link to the Behrens website is as follows.
www.periodontaldiseasecare.co.uk
I hope you got your teeth sorted out before you began treatment.
To all newly-diagnosed patients: Your oncologist should tell you to get all your dental treatment done before you begin chemotherapy etc., as well as getting your flu and pneumonia injections. It is not advisable to have dental treatment while having breast cancer treatment.
A friend of mine went for dental treatment while going through chemotherapy, picked up an infection and had to go to hospital to the oncology department for treatment before continuing with her chemotherapy.
I hope, Bernie, that you will take the time to go to CANCERactive and read 20 things you need to know about radiotherapy and then bring them up for discussion on the thread.
I hope you are having a good time in Cork.
Best wishes
SylviaHello Suze35
Thank you for your post. I can understand your frustration with the petty administrative stuff that drives us all up the wall when going through cancer treatment. I suppose the staff see so many cases that they cannot possibly understand the exhaustion of cancer patients, who want to get through the awful treatment, get home, rest and switch off.
All you can do is keep looking forward in the knowledge that you will get the trial drug at some point. As you say, it is better than the trials where some get the drug throughout and others do not. That must be very worrying as you do not know what is happening to you.
Everybody on this thread is thinking of you and supporting you and hoping that there will be some regression with just the Abraxane.
I would like to say that I do read the posts on Calling all TNs regularly and I admire your enormous courage. You and Laura Jane are a true inspiration. Titan has created a great thread. I am amazed at the number of women being diagnosed in the US. I have read that the US and Canada have the highest number of cancer cases in the Western world, but that you also have the highest survival rates. I have read that this is because patients are very assertive in their demands for treatment etc. I suspect that we are not far behind in the UK with a very high number of cancer cases, but our survival rates lag behind the US and Canada. I feel that people are not assertive enough here a lot of the time, seem to think that doctors always know best. We need, in my opinion, to become much more "pushy"!
Try to read the links to CANCERactive and About.com breast cancer. They are most helpful
Hang in there.
Best wishes
Sylvia.0 -
Hello Maria_Malta
Thank you for your post and for making the effort to keep in touch from your hospital bed. I do hope you are feeling much better today and looking forward to going home on Monday. I read your post about your surgery and I do hope that following blood transfusions your haemoglobin level is now normal.When you are feeling up to it, you will need some exercises and physiotherapy to keep lymphoedema at bay. You will need to rest and get plenty of good nutrition to build yourself up after the shock to the body of surgery.
We are all here to support you.
Best wishes
Sylvia.Hello bak94
I am so glad to know that you can now go through treatment without worrying about finances. You still have a long journey ahead, but you will soon be over chemotherapy and surgery on November 30th, which is not that far away. At least it will all be over for Christmas. I would not think you will have radiotherapy until after Christmas.
If you are not too exhausted please have a look at CANCERactive "20 things you need to know about radiotherapy". It is so much better if you can be fully armed with information before beginning treatment. Also try to read About.com breast cancer - chemo and radiation side effects.
I was interested to know that you are going back to school in January. Have you any idea what you want to do? I can certainly understand that you want to try to find a career where you are not handling all those chemicals and do not have to stand on your feet all the time.
For the moment try to avoid to stress as much as possible.
I was very intrigued about your post on the other thread about you chickens and the large egg!
All the best
Sylvia0 -
Hello Sam52
Thank you for your post and I hope you are able to have a bit of relaxation this weekend. I somehow think you may be working in your garden or on the allotment. One of my friends in the apartment complex has been feeding Raymond and me green beans and plums from her allotment. I cannot believe the amount of green beans she has produced on a small lot.I do remember reading the thread on BC.org linking root canal treatment and breast cancer. I can see the sense of that correlation. There seem to be so many things in our everyday life, that appear normal to us, that appear to open up pathways to cancer. I had root canal many years ago when I was living in Canada. As we all know, cancer is a multi-causal disease, so there will never be a magic bullet to cure it. Not only is it multi-causal, but the orthodox treatment seems to have multi-effects! Goodness knows how long it takes our bodies to recover from the treatment, if ever.
Perhaps all of us together can compose a list of all the possible causes of breast cancer about which we have read. As you say, we have gum disease and breast cancer, root canal work and breast cancer, parathyroid disease and breast cancer, childhood X-rays and breast cancer. I can add under-active thyroid and cancer, and today I have been reading about vitamin D deficiency and breast cancer. Here are some links that I have found today about vitamin D that I am sure you will find interesting.
Vitamin D - Enormous Potential to beat Cancer.
Again, this is on the CANCERactive site, which is full of all sorts of information. The link is:
www.canceractive.com
Remember that CANCERactive is a charity that posts information about orthodox treatment, complementary treatment and alternative treatment. In other words, it is an integrated Cancer Charity.
One line I picked up on the vitamin D pages was "If women obtained adequate levels of vitamin D there would be 25% fewer deaths from breast cancer". There are eight pages of information that I think you would find very informative.
I look forward to reading your comments and hope we can have meaningful discussions on this thread about vitamin D and how it can help us.
Best wishes
Sylvia0 -
Sylvia, I need to print the 20 things you need for radiotherapy! Thank you for the info! I was going to school for a BA in business administration or accounting, hadn't decided yet and many of the classes are the same. Sometimes I think of switching to science classes or more of a tech/vocational program within the medical field. OK, I am 44 and still don't know what I want to be when I grow up! I have an A.A.S. in commercial photography, but after my first diagnoses it was difficult to hold up heavy camera equipment, so photos became more of a hobby than a career. I then went into real estate for 5 years and I loved it, love the marketing and was able to use my photography/marketing skills. Then the market tanked, I would still like to continue in real estate. During all of this I have always continued being a hair colorist. My clients are the best and I would have a hard time not seeing them. Feeling tired today. I had a flat tire yesterday and needed all my tires replaced. My dear sister bought me new tires! (Of course I will pay her back!) I'm telling you, I get good news, like the ssdi and then wham! Another expense! I knew I needed new tires and have been trying to save up, but hadn't quite got there yet! Since 2002 I have had 2 cancer diagnoses and hubby has had 2 work related back and shoulder injuries plus he had a car accident, this is how we depleted our reserves. I am just thankful we are still moving along and he has a good job with insurance benefits, we just need to catch up a bit and pay off bills! I am so thankful for a great family, my husband, and all my furry critters! We can get through this!
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Hello bak94
Thank you for a most interesting post.I am sure you will find the information about radiotherapy very worthwhile. I think we all need to go to our treatment fully informed.
I do hope you will find some studies or a career change that you will find satisfying. You are still very young and have plenty of working years in front of you.
I was interested to know about your work in commercial photography and I can quite understand why you could not continue with that after your first diagnosis with breast cancer. It must be very nice to have it as a hobby.
Real estate is a good career to have, but of course you have the ups and downs of the market with which to contend. The market here is pretty dead as well. In fact the US, the UK and Europe seem to be in a real mess with the politicians running around like headless chickens! If you enjoyed Real Estate, perhaps you will go back to that, if and when the market ever recovers.
I suppose with your hair colourist work, part of the enjoyment of the work is talking with the clients. They say that women tell their hairdressers all their problems.
I was sorry to hear about your flat tyres. This seems to be part of life. There are periods when everything seems to be going well and then problems start happening all at once. When I was going through radiotherapy, the washer-drier packed up on us. This year we have had to replace the boiler for the central heating and the dishwasher. We have had weeks when we had one problem after the other. At the moment we have a car that is thirteen years old, with lots of mileage. We have had no problems with it, and are reluctant to buy a new car.
A friend of mine always used to tell me that "this too will pass", or "what goes around comes around" or "if you have lemons make lemonade". It is true that we worry ourselves sick over things when we should tell ourselves that life is too short to worry, and that problems usually resolve themselves.
Concentrate on the positive. You and your husband have survived everything that has happened to you. You have good insurance benefits with your husband's job. You now have some benefits to help financially and you have your animals for comfort. You can get through this, as you say. Remember that song "I shall survive".
I hope you have a good week and that goes for all of you on the thread.
Best wishes
Sylvia.0 -
Hello mcrimmon324(Heather)
I hope you are alright and that you are moving on with your treatment. Have you had your test for BRCA yet? Are you still waiting for your radiotherapy?
Best Wishes
Sylvia.
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Hi everyone, i had a great weekend away but i fell out of the bed in the hotel and hurt my back. Not too bad just a lovely big bruise. Day 15 of rads today, starting to get very red and itchy. They have prescribed cream to put on twice a day so hopefully it will ease.
Sylvia, have been reading up on the canceractive site - plenty of information to work through.
Bernie
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Hello Bernie,
I was glad to know that you had a good weekend, but sorry to hear that you had fallen out of bed. That is not what you want when you are going through treatment.
I was glad to know that you are going through the Canceractive information. It is so useful
Please post your comments on the information. It is so important to discuss and exchange ideas. Good luck with the rariotherapy this week.
Best Wishes,
Sylvia.
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Hello mcrimmon324 (heather)
I have just read your post on another thread and thought I would just say that you are not supposed to be Wonder Woman! Please take it easy.
You have not long finished chemotherapy and need to be very gentle on your yourself. Have a gentle walk. I would think that painting is far too taxing and that you need to be careful about paint fumes. Your whole system has taken a real beating.
Please relax,
Best Wishes,
Sylvia.
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Hello Maria_Malta,
I do so hope that you are out of the hospital and back in the comfort of your own home. Please take it easy this coming week. Get a good book to read.
Best Wishes'
Sylvia.
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Morning Sylvia,
Believe me, I had no intentions of over-doing it yesterday with the painting. I always think I love to paint but when I get started I realize how much I hate it and it always takes twice as long and is twice as much work as I thought. I don't think the paint fumes bothered me at all, I didn't even notice them really. I'm starting to feel better and want to get back into my exercise routine, I had lost a good amount of weight right before chemo and have put alot of it back on and I'm uncomfortable and it's affecting my mood. I won't go crazy but will try to increase little by little everyday. It's too hot here for a walk outside, I'd rather go easy on the eliptical in the air conditioning. Thanks to chemo I've been getting horrible hot flashes and would probably pass out if I was in the heat.
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Hello Mcrimmon 324,
Thank you for your post I forgot that it is still hot in Florida and I understand that you prefer to stay indoors in the cool, I am sure your weight will get back to normal as you put treatment behind you.
Painting is very hard work. I used to do a lot pre-cancer, but have not been able to face it since.
I have no idea how old you are, but do know that younger women have problems with hot flashes due to periods stopping during chemo. They sometimes come back, but apparently not always. My chemotherapy treatment caused me to have red blushing on the face from the start and I still get it if I feel too hot or too stressed.
Best Wishes,
Sylvia.
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Hi mccrimmon, i would be with sylyvia on this, take it easy - spoil yourself.
sylvia, i went throught the change early at 40 - now I have just started having hot flushes.
Must admit ladies, i still like the glass of red wine - not ready to change my whole life just yet. I refuse to let the BC totally control me
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Hi mccrimmon, i would be with sylyvia on this, take it easy - spoil yourself.
sylvia, i went throught the change early at 40 - now I have just started having hot flushes.
Must admit ladies, i still like the glass of red wine - not ready to change my whole life just yet. I refuse to let the BC totally control me
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Hello all,
Got back home yesterday and so happy to be here..last night was the first time I had a reasonable night's sleep since the op last Wednesday... After the second day and having been given a blood transfusion, I felt reasonable in hospital, but the touch screens available to patients are very awkward to use, which is why I only sent the one short message..
Anyway, I had my bmx,and using the technique I've mentioned before, after removing all breast tissue, the bs folded the skin in such a way as for me to be left with 2 small 'bumps', my little psuedo-boobs.. he also divided my left nipple in two and grafted each half onto each new 'boob'. (???!!!
) He told me that he couldn't guarantee that the graft would take, but when docs checked them yesterday they were v pleased with the result and new nipples will probably hold... Apart from the drop in haemoglobin, which has now been resolved (though I am to keep taking iron supplements for 3 months), the after effects of the op were pretty copable with.. I was on morphine for the first 24 hours, but then I found that panadols were actually enough to keep the pain under control, and yesterday I only took a couple before going to sleep at night, and today I haven't had the need to take any. My drains were removed on Saturday morning, 3 days after surgery. The PT at the hospital visited me and gave me simple exercises to do every day which I am religiously following, and next week will be told what exercises to add. My next appt to see bs is this coming Friday, but won't have the pathology report for another week or so after that...fingers crossed. I am very lucky to have excellent support from family and friends, and my kids are old enough to look after themselves... I really feel for those women who have no one, or who have to come home to look after young children...I honestly can't imagine how they do it!!
Love to all xxx
BernieEllen, I haven't given up alcohol altogether either..like you I really enjoy my red wine, and I figure that there is no harm in occasionally drinking a glass or two.. in any case red wine has antioxidants, which should offset the sugar!!!! Although I am being very careful with what I eat and drink, I also believe that an occasional treat will probably be more beneficial than not!
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Hi Maria, hope the recovery goes well. Take things easy and let yourself be spoilt. We all need the occasional treat.
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Hello Bernie
Thank you for your posts. I do agree with you that, especially when going through treatment, you have to spoil yourself. Rest and relaxation is so important and avoidance of stress most important of all. When you go through stress the stress hormone cortisol increases and that is not good for you.I can understand that you do not want your breast cancer to have total control over you. You do have to try to live as normally as possible.
I noticed that your post appeared twice and sometime ago your photographs appeared twice. Is there any connection between this and the glass of red wine???? How big was that glass?!
I hope you are having a good week.
Hello Maria
I was so glad to know that you are back home and that all is going well.
Thank you for all the details about your bilateral mastectomy. It will be very useful for all of those viewing this thread and possibly having to face the same surgery, to know that they can get through it just as you have done. When we are posting we must always bear in mind that newly diagnosed patients may be looking and be in a state of shock and anxiety.
I was very interested to know how your breast surgeon folded the skin in such a way to leave you with two small bumps and make nipples for you for both from the left nipple. That sounds like very clever work.
I was glad to know that you have not needed too much in the way of painkillers. It was the same for me. In fact, the day after my surgery I was not in pain and that surprised me. I was also glad to know that you got a visit from the physiotherapist and this is also what happened to me. Keep doing those exercises. Let us know how you get on this Friday at your appointment and I hope all is well when you get the pathology report.
Did you have lymph nodes removed?
I agree with you that support from family and friends is very important and that it must be awful if you have no one to support and help you. I did see women all on their own during my chemotherapy and radiotherapy sessions. It must be very hard for all the young women with young children to look after.
Look after your self and spoil yourself and have occasional treats. Life has to be liveable, otherwise what is the point of it all?
Best wishes
Sylvia0 -
Hello everyone,
I thought all of you reading this thread would be interested in a snippet of information that I found in one of the papers today. The title was "Protein May Hold Key To Breast Cancer Drug". Certain breast cancers apparently could be treated by targeting a protein in the cells, so scientists believe.A drug that switches off the protein has already been shown to prevent tumour growths in the laboratory.
This drug could be used for around a quarter od breast cancers that are classed as oestrogen negative and for which hormone-blocking therapies, such as Tamoxifen, does not work.
These cancers tend to be very aggressive. An analysis of 800 of these breast tumours found that when a newly identified receptor protein, known as ERRalpha is active, the cancer is more aggressive.
In tests, scientists at Duke University Medical Centre in the US were able to shut down ERRalpha with an experimental drug and stop these cancer cells from multiplying.
This could be good news.
I was wondering whether Suse35, bak94, christina1961 or mccrimmon324 know anything about this. In the UK we are usually behind the US, so you might have information you can give us.
I have just looked on the internet about all of the above and have found the following references:
http://latestnews.virginmedia.com/news/health/2011/10/17/drug_targets_breast_cancer_protein
http://pharmacology.mc.duke.edu/faculty/mcdonnell.htm
I do hope, bak94, that Maria's post about her surgery will help with your own surgery for bmx due on November 30th.
Best wishes to everyone.
Sylvia0
