Calling all triple negative breast cancer patients in the UK
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Hi Sylvia, thanks for the response to my post. I am in Edmonton, Alberta where it has been snowing like crazy all day now, bah, can't go out for my power walk. I am still doing chemo, the original plan was for 4x Fec then 4x Taxotere, after 2 FEC I was getting antsy because I wasn't seeing much progress so my Onc said "well, we can start with the Taxotere now then" so we did, yesterday I had my 4th of 6 (possibly 8) Taxotere. I was lucky and sailed through the FEC (just lost my hair) but have not been so lucky with the Taxotere. around day 4 the bone pain hits and I am down for at least 2 days with that then one day of sleeping to rest from the previous 2 days, so that will be Sat, Sun and Mon coming up. The reason I say possibly 8 Taxotere is after the 2nd Taxotere we started noticing that the tumor is now getting softer and things seem to be working, I was concerned that it keeps working then we just stop because we reach the "magical' number. My Onc said if we're still seeing progress after the 6th Taxotere we can continue on and do a couple more. Next of course is then surgery (mastectomy) then radiation. So I've still got a ways to go.
You are right, Liv does bring a liveliness to the boards which I miss. I am sure I'm not the only one concerned about her right now. Let's hope we hear from her soon.
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Hello Sylvia & everyone,
I don't get to post too often at the moment. Emma has kept me busy, the little mite is teething and is a bit cranky these days. Also the rads are keeping me busy. I have to say I'm sick of them at this stage. Have been very tired but the fatigue seems to have passed for now. Going in and out of hospital every day has been the hardest part, it's such a disruption on my daily life but I wouldn't be without it either. I have 16 rads done, 9 more to go. In fairness the process itself is fine. My skin is coping quite well with it but I make sure to lather myself with aqueous cream a few times a day. It is now quite pink and getting a bit itchy. I am quite slim and have no exess skin, up by my collar bone I am literally just skin and bone and that is where it's getting itchy so I will keep a firm eye on it to make sure the skin doesn't break. But all in all rads are very doable. The nurses have been wonderful.
In response to your question re our holidays Sylvia, we are going to Lourdes for a couple of days and then onto Biarritz for a week. We have been there before so we know what to expect which is why it was appealing to us now as we are bringing Emma with us of course.
I hope everybody is having a good week, I love to catch up on all posts when I get a chance.
Love and blessings to all,
Carol x
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Hi Sylvia,
My husband has his degree in history, and knows a lot about all time periods - he is really a history buff, and reads the nitty gritty technical details, as well as strategies and tactics of war from all periods. We have 4 floor-to-ceiling bookcases filled with his history books! I worked with a lady for 5 years who was from England, she always mentioned when she was "going across the pond." Oh I loved her accent, and for our birthdays, she would take us to this quaint restaurant called The English Rose, where we would eat all the traditional foods.
)I found out today from my PS, that he has released me to do exercises. The pathology report came back on the mass that he removed (which he felt was scar tissue and MRI showed as non-malignant), and the lab reported it also as normal.
He did confirm that the left implant was backwards upon removal, but that my new set of saline implants should stay in place fine.
It was a great day!
- implant rotation
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sylvia - I have a call into my Radiation oncologist and she will phone me tomorrow. I will discuss with her my anxieties. Both of my oncologists know about the osteoporosis - I have had it a long time and like you I refuse to take the biophosphonates. I haven't had a bone density done for 4 years now, but I am going on Tuesday (March 26th) to get have one done - it will be interesting to see if there are any changes. I have not lost height. I take vitamin D and 600mgm calcium - I was taking a mineral tablet, but haven't since I started chemo. I am not a great believer in large calcium intake (like yourself) other than from food. I do walking every day for the weight bearing exercise. Sometimes I can break or bruise a rib just from bending over the wrong way. I do have to be very careful. I will keep you up to date on the radiation - I will most likely go ahead and do it, but just need reassurance from the radiologist.
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Hello Sjesse12345,
Thank you for your post. I was interested to know that you come from Edmonton. I had one visit out west while I was living in Montreal, Quebec. My husband, Raymond and I, flew out to Vancouver and visited there as well as Whistler Mountain. We then took the ferry to Vancouver Island, drove northwards to Port Hardy and from there took another ferry through the Inside Passage. I remember stopping at Bella Coola. We did get a glimpse of killer whales. From the ferry we then drove inland and down through the Rockies, visiting Banff and Jasper. It is a sight I shall never forget. I remember the Colombian ice fields and Lake Louise. We then drove back to Vancouver and flew back to Montreal.
I was interested to know about your chemotherapy and that your oncologist decided to stop FEC and go straight to Taxotere. I know from my own experience that with larger tumours it is quite a slow process to shrink them. Mine just went from 6+ cms down by a couple of centimetres. I do remember being told that the E (epirubicin) was quite nasty but the only side effect I had was tiredness. I just had EC so I cannot comment on the side effects of F (fluorouracil). I had this for three months every three weeks and then had paclitaxel (Taxotere) every three weeks for three months. Are you on the every three weeks regime?
I do hope all will go well with the Taxotere. My understanding is that the taxanes (Taxotere and Taxol) are both very effective against breast cancers with triple negative receptors. For all of these drugs there is hair loss, but it does grow back.
If you have to have eight doses of Taxotere you are still halfway through. My oncologist did tell me that Taxotere was not as harsh as Taxol.
I did not experience any bone pain with any of my chemotherapy treatment, but my understanding is that it is quite common. Are you being given anything for the pain? I seem to remember a lot of women having Neupogen or Neulasta injections to deal with the side effects of chemotherapy. Some find it alright and others do not. I was not offered this.
Do not worry if you need to sleep a lot, as rest is good and will help your body to fight these drugs. I do not think you should necessarily expect the tumour to disappear completely. With larger tumours, chemotherapy is done before surgery to help shrink the tumour and make surgery easier.
I have still not heard from Liv and I have sent a private message. It is strange that she is not communicating as the two of us got on very well and I even had a PM from her father, who seemed a really nice man.
Have a good weekend over there in cold, snowy Edmonton. I do remember the months of snow in Montreal, Ottawa and London, Ontario. I used to do a lot of snow clearing!!! Here in Exmouth, Devon, we have had a month of rain in two days and the wind is awful. There is a lot of flooding. Elsewhere in the UK, Scotland, Northern Ireland, the North of England and Wales they are all snowed up and there is the usual chaos. This time last year it was very mild 21C. Now it is about 3C.
Best wishes.
Sylvia xxxx
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Hello Mumtobe (Carol),
Thank you for your post and I am sure we all appreciate your popping in to say hello, especially as we know that you must be very busy with little Emma.
All of us that have been through radiotherapy can understand how busy it is keeping you. As I have said many times before, radiotherapy seems easier after chemotherapy, but having to go in five days a week is very tiring and time consuming. You are right, it does disrupt your daily routine. You are nearly finished now.
I was glad to know that you are taking good care of your skin.
I was very interested to know that you are going to Lourdes for a couple of days when you go to the south of France. I went there for the day when I lived in Toulouse. I am not religious but it is a visit that you do not forget. I remember the crowds of people there and going into the Basilica. Of course, there were a lot of sick people there praying for recoveries and miracles. I vaguely remember passing through Biarritz on a tour that way. You should get some nice weather in that region.
Fond thoughts. Keep well.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
Thank you for your post. I was interested to know that your husband has a degree in history. I loved history all through school and still take an interest in it. At school we covered a lot of history during our time there, age 11 to 18. I went to what we called a Grammar School, having passed a scholarship exam at age 11. These were schools for the academically inclined and history was always one of my favourite subjects.
I was interested to know about your English friend and The English Rose restaurant. What do you think of English food? It does not have a good reputation. I think people here like full English breakfast and roast dinners.
I know that you must be really relieved to know that you can get back to your exercises. I think not being physically active was making you anxious.
I do hope that everything will be alright with you now and that your new saline implants will not cause you any problems.
Thank you for your PM. I am glad I was able to help a little.
Have a good weekend.
Best wishes.
Sylvia xxxx
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Hello adagio,
Thank you for your post. I do hope everything will be alright when you hear from your radiation oncologist. Since they know about your osteoporosis, I hope they will be extra vigilant and keep a good check on you.
Do you know what caused your osteoporosis? I do not know how old you are and so do not know whether it is thinning of the bones that we are told is quite common in women after menopause. I was most interested to know that you have also refused to take bisphosphonates. I hope you have a good result when you go for your bone density scan on March 26th. Here in the UK, if you have osteoporosis, you are normally entitled to this scan, a DEXA scan, only every five years. I pushed for one recently after three years. My GP told me I could have one only every five years on the NHS, so I spoke to the consultant who diagnosed my breast cancer and hyperparathyroidism and got one that way. The scan showed not much difference in three years.
I have been repeatedly offered bisphosphonates, but I have refused them and shall continue to refuse them. Like you, I am taking 500 mg of calcium (citrate) but sometimes just 250 mg. I am concerned about calcium supplements causing cardiovascular problems. I also take 1000 IU of vitamin D3 and sometimes a bit more. I also take magnesium supplements which help to absorb the calcium. On the whole I get my calcium from food. Like you, I try to keep active and like to walk.
Please let us know how everything goes. In the meantime, enjoy your weekend.
Love.
Sylvia xxxx
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Hello everyone,
It is a very wet and windy Friday here in Exmouth and I would not be surprised if we had some trees come down.
Another week has gone by and it has been a busy one on the thread.
Special hellos to Bernie, you have been very quiet this week. I hope it has been a good one for you and that you had an enjoyable day on Monday which I saw from diary was a public holiday. Have you had any snow?
Michael, I hope the week has not been too bad for you and that you also enjoyed the public holiday in Northern Ireland. I saw on the news this lunch time that you are getting bad weather with lots of snow. I hope you are coping. Please pop in as we would all love to hear from you.
Hello sam52, I have been wondering how you are and hope that all is well with you and yours. I received a letter today from my consultant at the RD&E Hospital. You will remember she is also my endocrinologist. The same letter went to my GP. The consultant omitted to send me a copy of the actual scan, so I phoned the surgery for a copy and shall collect it on Monday. I do sometimes wonder what goes on with the hospital and GPs. This letter merely states that I have osteoporosis (you don't say! I could have told you that!!). It then goes on to say I may need to increase my medication to strengthen the bones. I am not taking any medication and have not been prescribed any since I was told about the osteoporosis in 2009. It further requests me to make an appointment with my GP to discuss the DEXA scan. It ends with the sentence saying that if I have any further concerns my consultant will be pleased to see me in outpatients. I have made an appointment with the GP but cannot get one until April 8th.
I remember your telling me that osteoporosis caused by hyperparathyroidism was reversible. Do you remember where that information was and if there is anything about how long it takes to reverse. I still think my osteoporosis was caused primarily by the breast cancer treatment and cannot be cured but through what I am doing may not deteriorate.
Lolalee, tell us more about Hong Kong.
FernMF, all is quiet with you in West Virginia. How are things going?
PeggySull, how are things going?
Carolben, I do hope everything has not been too bad this week, that you will have a relaxing weekend and that you will pop in to say hello. My friend came back recently from a four week holiday with friends who live in Cape Town. Although I tell her not to, she always brings a present back. This time she brought an ornamental ostrich egg that was decorated but was an actual ostrich egg. I could not believe how bit it was. She was unwrapping it in my apartment, as it was really wrapped up with bubble wrap and suddenly it slipped from her hands onto the carpet and broke! We could not believe it but she told me it was made of ostrich eggshell and thus very fragile. She was upset but I gave her a big hug and told her not to worry. To think she had carried it many thousands of miles and then for it to break at the last moment back home.
Take care and fond thoughts are coming your way.
Hello lynnlex, I have not heard from you since I answered your PM. I do hope things are not so bad and that you are still viewing, even if you do not feel like posting.
Best wishes to everyone, viewing or posting and thanking you for making this thread a success.
Sylvia
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I saw 2 bone supplements at Whole Foods yesterday. They looked amazing and I'm going to ask my Onc about it to see if I need one for maintenance. I don't get calcium I don't think as I don't drink or eat anything from the cow.
It is from Garden of Life, Living System Advanced and Raw Bone Health. The 2nd one specifically tackles osteoporosis.
Living System Advanced: http://www.amazon.com/Garden-Life-Calcium-Advanced-Density/dp/B000QF5NIS/ref=sr_1_1?ie=UTF8&qid=1363978566&sr=8-1&keywords=garden+of+life+raw+support+bone+health
What do you all think of these?
- Supplements
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Hello, sorry I have been negleting you all. My fingers are very painful at the moment. I have arthritis that is a side effect of Guttate psoriasis. This affects the joints and now I am having pain at the base of my thumbs.
It is very cold here but no snow. Northern Ireland and England are having seriously bad weather.
I hope you all have a good weekend.
Bernie
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Hello Sylvia and everyone,
Sorry to hear you are having problems with your joints Bernie, the snow and extremely cold weather certainly would not help. I just do not think I could survive such cold conditions. Give me the heat and humidity anytime.
Just got back from a shopping trip to China. Am laden with beautiful scrumptious silk, just need to work out what to do with it! I did buy enough to make curtains and was very surprised at how cheap it was, really cheaper than cotton back home. Guess it will not last forever as labour costs are increasing over there as well.
Hope everyone in treatment is doing well.
Hope you all have a great weekend.
Love Lola.
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A young lady came home very sad from a date.
She told her mother, "Anthony proposed to me an hour ago."
"Then why are you so sad?" her mother asked. "Because he also told me he is an atheist. Mom, he doesn't even believe there's a Hell."
Her mother replied, "Marry him anyway. Between the two of us, we'll show him how wrong he is."0 -
Nearly choked on my gin n tonic......thanks for the laugh Bernie.
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Hello InspiredbyDolce, Lolalee and BernieEllen,
Thank you for your posts. I shall be answering later on today. Keep up the good work.
Thinking of you all.
Sylvia xxxx
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Hello InspiredbyDolce,
Thank you for your post and for your PM. Thank you for the links to do with calcium supplements. There must have been some kind of telepathy going on between us, because I have also been researching calcium because of my osteoporosis.
I have been looking at the following website.
Www.nutrilusdirect.com/bonebuilder/treating-osteoporosis-naturally
Have a look at it.
I discovered this MCHC calcium (Microcrystalline Hydroxyapatite Calcium). I had never heard of this and the claim is that it is a new and revolutionary type of calcium that is ten times easier for your body to absorb than any other form. Of course, they would say this because they are selling the product. If you look up the link you will see a list of all the ingredients in this bottle of bone builder and the dosages in it. Let me know what you think. It does contain the essential vitamins and minerals that work together to strengthen bones, such as vitamin K, vitamin D, calcium, magnesium, zinc, copper, manganese and boron. I know that I am getting all these with the supplements that I take already, but the additional ones here are silicon, NovaSoy isoflavones and Bioflavanoids Complex. There is a claim about reversing bone loss.
My own research shows me that osteoporosis caused by chemotherapy (and possibly radiotherapy) cannot be reversed. What I am trying to do is to stop it getting any worse through supplements, nutrition and exercise.
As for reversing osteoporosis from an over active parathyroid, once the parathyroid problem has been cured through surgery, it might be able to be reversed, but not necessarily. Because I had the cancer treatment my osteoporosis cannot be reversed.
I was also looking up another website:
www.naturalnews.com/027194_tea-green.html
The title of this is Green Tea could naturally prevent and treat osteoporosis, scientists say. I would be interested to know what you think. Reading this page I saw the following sentence.
“1 tip to shed 9lbs weekly.
Cut 9 pounds of stomach fat every week by using this 1 weird old tip”
“www.thehealthandwellness.com”
I have not had time to read this.
Something else I discovered from Psychology Today: Complementary Medicine.
Osteoporosis-Natural Help for Strong Bones. This is all about strontium for osteoporosis.
Thank you for your PM about the genes. You are so lucky to have an oncologist who will send you an e-mail with all those details. I do not think that would happen here.
To everybody, especially the newly-diagnosed, if I were you I would make sure that your medical team point out to you the possible long term effects of your treatment, especially chemotherapy. They tend to point out hair loss, fatigue, sickness etc., but not, certainly in my case, the long term effects. My treatment has left me with osteoporosis and neuropathy in the feet and it looks as though neither of these can be cured. I can live with them of course, and in the order of things it is a small price to pay for being alive. If I had to do it again I would, because otherwise I would probably be dead. It is important to go into your treatment fully informed. It also makes sense to have a bone density scan, a DEXA scan, before and after treatment. If I had had a DEXA scan on diagnosis at the same time of breast cancer and an over active parathyroid, I would now know whether I had the osteoporosis before I started the cancer treatment, given that I was told my parathyroid problem preceded the breast cancer.
I hope you are having a good weekend.
Best wishes.
Sylvia xxxx
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Hello BernieEllen,
Thank you for your posts. Thank you for that wonderful joke that really made Raymond and me laugh. We certainly need to laugh with all the awful news that the government keeps dishing out like doses of nasty medicine, not to mention the mess the world is in.
I was so sorry to hear that you are in pain with arthritis. People tell me the pain is awful. I have never heard of Guttate psoriasis. Is it different from ordinary psoriasis? The husband of a friend of mine has this and he takes high doses of fish oil capsules (EPAs etc). In our local Holland and Barrett store I see a lot of supplements for arthritis pain. Do you take any of these supplements?
It is still very cold here, but at least it is dry. The weather has been dreadful in Devon and a woman has died when her home collapsed from all the rain.
I do hope Michael is alright in Northern Ireland.
Thinking of you and wishing you well.
Sylvia xxxx
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Hello Lolalee,
Thank you for your posts. It looks as though you had a good shopping trip to China. I am sure you will find something nice to deal with that silk. What did you think of the part of China you visited?
Everything here in England seems to be made in China, but the clothes, especially, are not good quality.
One of my nieces works for a company that does business in China and she spends months on end in that country. A cousin is on a cruise through China as part of his present for his seventieth birthday in June. He flew with his wife to Hong Kong via Singapore and then went on a cruise.
Keep enjoying yourself.
Best wishes.
Sylvia xxxx
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Hello everyone,
I was just wondering whether any of you have read the edition of Time magazine, dated April 1st 2013. The title on the cover is How To Cure Cancer. Yes,it is now possible- thanks to new cancer dream teams that are delivering better results faster. By Bill Saporito. Page 20 The Conspiracy To End Cancer. There are six pages of detailed information and triple negative breast cancer is mentioned.
I need to read it again.
I would welcome your comments.
Best Wishes,
Sylvia.xxx
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Hello Linda in Marietta US,
I hope you still look at this thread from time to time and I just wanted to say congratulations on reching four years since diagnsosis.
Fond thoughts from the UK.
Sylvia
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Hello everyone again,
Since I have been researching and posting about osteoporosis, I thought the following links might be of interest, especially to the newly-diagnosed and facing treatment, but also those going through treatment or have finished it. The following link is for Breast Cancer Care. This is a charity in the UK for anyone affected by breast cancer. The link for their website is:
www.breastcancercare.org.uk. There is also a free helpline.
The fact sheet that I have been reading is entitled Breast cancer treatment and the risk of osteoporosis.
This fact sheet is for people who have been treated for breast cancer and may be concerned or want more information about their risk of osteoporosis.
It covers everything from What is osteoporosis, How it is diagnosed, What causes it, Who is at risk, Breast cancer treatment and bone density, How will I know if I am at risk, Looking after your bones, Calcium, Tips to boost calcium, Vitamin D, Exercise, What if you think you have osteoporosis.
Another link is Osteoporosis in Women with Cancer.
http://cancer.uams.edu/Taxonomy/RelatedDocuments.aspx?id=0&sid=0&ContentTypeId=34&ContentID=26577-1
This is also detailed but easy to read. It covers the following topics.
What is osteoporosis?
How does it develop?
How does cancer treatment affect bone loss? (Early menopause, chemotherapy, hormone therapies, ovarian ablation)
Can osteoporosis be prevented or treated in women with breast cancer?
Lifestyle changes you can make.
Prescription drugs that may help.
I do hope you will take the time to read these things. There is a lot of information out there on the internet, a lot of which may be confusing and not really necessary as you go through treatment. What we do need to know are the most simple things, such as the kind of cancer you have, the receptor status, the stage, the grade, lymph node status and the proposed treatment, which will be a combination of surgery, chemotherapy and radiotherapy. You need to know what the chemotherapy drugs will be and why, the regime, how often the chemotherapy treatment will be, surgery, lumpectomy, mastectomy, bilateral mastectomy and why. With radiotherapy will I get it or not, if not why not and how many weeks?
I hope this will help, especially new-comers.
Wishing everyone all the best.
Sylvia xxxx
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Sylvia - just wondering if you have any information on taking kelp during radiation? I heard this was a good supplement, but haven't found much on the web about it. I did read that it supports the thyroid during radiation so this would seem a worthwhile thing to take for that purpose in itself. I am also going to take astragulus which is apparently good for the fatigue and the blood counts.
I have an appointment with my radiation oncologist in the morning so I will see what she has to say about the osteoporosis. My medical team is aware of me having osteoporosis and neither my MO or RO have mentioned it being an issue. In terms of chemo causing osteoporosis - I thought this was only for those women who had to take the Tamoxifen and Aromatose Inhibitor drugs. I could be wrong here, but I couldn't find anything about the taxanes and doxirubicin causing osteoporosis.
I am going for a DEXA on Tuesday so I will see if there are any marked changes in the measurements. I don't have the report from my last one but it will be on file with my GP, so I can ask him if there are any significant changes. It would be nice if there weren't any changes because if there are, I know he will suggest the biphosphanates and I know what my answer to that will be.
Hope you had a good weekend. We had glorious weather here in Vancouver - it was 13 degrees celsius and sunny - such a pretty time of the year with all the colours of blossom and flowers in bloom.
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Hello adagio,
Thank you for your post. I do not have any information on taking kelp during radiation. I shall see what I can find.
You said that you had read that it supports the thyroid during radiation and that would seem to be useful. I do not know how much damage may be done to a person's thyroid gland (or indeed the four tiny parathyroid glands that sit on the thyroid), but if that were me now with that knowledge, I would be having a talk with my oncologist and/or radiotherapy oncologist. On these threads we are learning things all the time. We can certainly discuss anything, but your first port of call is your medical team. It is always interesting to find out what they say and whether you agree with what they say. We always have to bear in mind that those in orthodox medicine are usually against alternative and sometimes even complementary treatments.
If any of you have any information about kelp and its usefulness during radiotherapy, please post and let us know.
All I can say about kelp is that for quite a while after my treatment I took kelp tablets and kelp powder for a long time. I no longer take the tablets but I use kelp powder sprinkled on my evening meal to keep my thyroid in good working order. Kelp contains iodine which the thyroid needs to function properly and it is not easy to get in our diet. Some countries may still have iodised salt but I do not use salt at all, as I am told it is very bad for your blood pressure and that the western diet has too much salt.
Ask your oncologist and let us know what he/she says.
As for astragalus, I did take it regularly for some time, especially when I was first diagnosed and had it prescribed to me by a reputable herbalist in power form. I used to make it into a tea. I have been thinking of taking it again. you can get it in capsule form and empty the capsules and make a tea. I have not done it so far because I am a bit wary of taking too many supplements. If you have it from a good source that it helps with fatigue and blood counts, again it would seem to be good. Again, I would probably be asking my medical team, expecting a negative response and then making up my own mind.
I would be most interested to know what your radiation oncologist has to say about osteoporosis. I have found extensive information about chemotherapy drugs and osteoporosis, but individual drugs were not mentioned. I think we all know the drugs are lethal and certainly do not do our bodies any good. I remember during my own chemotherapy that the chemotherapy nurses were calling epirubicin (same group as doxorubicin) the red devil, so that certainly does not inspire confidence. When I was due to start docetaxel (Taxotere) I remember asking the nurse for some written documentation about the drug. She went off to look for something, came back with a leaflet and said “I do not know if I should give you this, as the side effects seem awful!”. What I remember most from reading it was about toenails falling off or going brown!!!
Today I went to collect my written DEXA scan results from my surgery. Reading through the chart on which were the results from the three DEXA scans that I have had, I saw that there was very little difference. The first scan was in 2009, shortly before I had the parathyroidectomy, the next one was three months later in 2010, and the latest one February 2013. All the readings were almost identical. All I can say is that there has been no improvement but no deterioration. The frustrating thing for me is that I do not know what state my bones may have been in before that first scan. Since I was very healthy and had no symptoms I tend to think that I had no problem until I had the cancer treatment starting in 2005. I cannot be certain because I do not know how long I had had the parathyroid problem. I have again read that osteoporosis from parathyroid problems may be able to be reversed but not necessarily and could take years. I have decided to live with the fact that I have osteoporosis, that I have managed to keep it stable since 2009 and shall continue to try to keep it like that.
I am going to see my GP on April 8th to discuss the scan results, but whatever she says I shall not be taking bisphosphonates. I shall continue with a calcium rich diet, calcium supplements with the other supplements that work with them, vitamin D3, magnesium, and vitamin K being the most important. My friend took bisphosphonates for seven years, was very unwell with them and her latest scan showed more deterioration.
I know that you do a lot of research so I was wondering whether you had heard of the calcium that I gave a link to on posts yesterday. It is MCHC (microcrystaline hydroxypatite calcium). Another link mentioned strontium calcium.
I cannot believe that it was 13 C and sunny in Vancouver. We are getting the coldest weather in March for a long time. It it about 3 C. A year ago it was 21 C.
Look forward to hearing from you again.
Best wishes.
Sylvia xxxx
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Hello everyone,
I am concerned about some of the posts that I am reading on some of the other threads. Do not waste your time trying to find one cause of breast cancer. Cancer is a complicated and multicausal disease. The latest thing seems to be caffeine and whether it is good or bad if you have TNBC. The alcohol issue is also back. Everything in moderation is probably a good idea for most people, and the so-called experts keep changing their mind. One day coffee and caffeine is the villain and the next it is the great miracle worker! A little of what you fancy does you good and we all make our own choices about what we eat and drink. Living is risky and is the main cause of death (100%)! Unless we confine ourselves to life in a bubble, each waking morning puts us at risk. Even during our sleep we are at risk, but it sure beats the alternative!
Enjoy each day to the full.
Best wishes.
Sylvia xxxx
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Sylvia - I ended up getting my first radiation treatment after all. However, I didn't get to see the RO, because there was some confusion in bookings - but I did talk with the head technician and I felt comfortable with her responses to my questions. The likelihood of fractured rib is not necessarily more in bones that have osteoporosis - someone without osteoporosis could still get rib damage. It is inevitable that the ribs are exposed to radiation. So I am keeping my fingers crossed - she said that it is very, very rare.
Regarding talking with my medical team about supplements - I have kind of given up because I almost know what they are going to say before they even say it. You hit the nail on the head - they do not readily accept alternative treatments. I am guilty of doing my own research and then making my own informed decisions. I do have an integrative medical doctor that I consult with and he is in approval of the supplements and he also alerts me to the fact that the traditional oncologists would not necessarily agree and I am well aware of this. There is no research to suggest that the supplements are harmful in any way. I always let my oncologists know what I am taking.
That is great news that your dexa scan results have not deteriorated in the past few years. I understand your dilemma of not knowing if you had osteoporosis before the cancer diagnosis since we know that osteoporosis is a silent disease. Keep doing what you are doing and perhaps it may get better although I personally believe that thinning bones is a natural part of the aging process. It's just that many years ago all these tests weren't available and most people were totally unaware of what was going on in their bodies.
I am going to research that calcium supplement - it sounds interesting.
Have a great day - I guess I should buy some cream to use on the radiated breast - not sure what kind to get though.
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I just wanted to share language from the handout my RO gave me before starting rads. They give this to all rads patients at the hospital. I understand there are a variety of views on the subject. I just wanted to add this to the mix.
"Some individuals with cancer take large amounts of antioxidant vitamins in hopes that they might enhance their immune system or even destroy cancer cells. We strongly advise against this practice during radiation therapy. Studies have shown that some of these substances may interfere with the tumor killing effects of radiation treatment. Radiation treatment works by creating free radicals, which kill the cancer cells. There is some evidence in animal studies and cell studies that antioxidants might block this mechanism by neutralizing the free radicals...
"You are encouraged to eat as healthfully as possible before, during and after cancer treatment. Include fruits and vegetables that contain a wide variety of naturally occurring antioxidants in your daily diet."0 -
placid 44 - thanks for this reminder - I got the same thing from my MO. I don't take any powerful antioxidants - I try to get those from my diet in the form of leafy greens and garlic, onions, broccoli, etc. I do take fish oil which is ( I think) theoretically an antioxidant but it was OKd by the MO - the other supplements which I take are not antioxidant in nature. Although as soon as I finish my treatments I may add some more antioxidants to the daily mix. But to be truthful, I can only take so many pills in a day, so I will seriously have to pick and choose!!
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Hi Sylvia and everyone
Following on from Sylvia's last post I would just like to add this quote, although I know it is not entirely appropriate but the sentiment is generally correct, I think
“No pleasure is worth giving up for the sake of two more years in a geriatric home at Weston-super-Mare”
Kingsley AmisAlthough there has been no snow in Killyleagh I know that a few miles away things are pretty bad. Northern Ireland just isn't used to this, believe it or not snowfall is normally a couple of days in February. Winters tend to be very mild. Personally I am fed up wearing the same coat, hat and gloves and what a time to be loosing my hair, not that there was a lot to begin with anyway.
I am due treatment number two on Thursday. It is amazing how all the old anxieties surrounding treatment come back and the thought of what next etc.
I am impressed with the level of prophylactic medicines I am getting. I have thrice weekly antibiotic, daily anti viral, daily anti fungal and mouthwash and Neuopgen growth factor, plus enough laxitive to keep an army regular. I don't seem to remember Janette getting these medicines even though her chemo was tougher.
In respect of taking supplements. My late cousin had bowel cancer was very pro active. She did acupuncture, Angel therapy, Chinese medicine as well as any conventional therapy offered. She defied the odds, although the doctors said her cancer wasn't very aggressive and she had quite a good quality of life.
I have got the latest research news section of the web site (www.janettecollinsfoundation.org) up and running. If anyone would like to add their stories please let me know and I will add them. I think it is useful for the newly diagnosed to share others experience. I remember Janette being devastated and my telling her that those feelings will pass and life will take on a new normality.
Take care everyone and good health.
Michael
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Hello adagio,
Thank you for your posts. You must be relieved to be getting on with your radiotherapy treatment. This will keep you very busy as you have to go in five days a week. I do hope you will get through this without any problems. Let us know your experiences so that we have up to date information. It will be useful to see how what you have to say compares to Mumtobe (Carol) in Ireland and her experiences. She must be nearing the end of her radiotherapy treatment now. We can also compare experiences with placid44 in the US as she must now be going through radiotherapy.
I can understand your attitude to supplements and your medical team. I have much the same attitude. I do what I feel what is right for me. Orthodox medicine just believes in medication, despite all the harm it is doing and how the various medications all seem to be in conflict and cause you to keep taking different pills. I shall always steer clear of statins and steroids and be vigilant with antibiotics which are dished out too easily.
I was so interested to know that you have an integrative medical doctor. That must be very useful.
There are no statistics showing that supplements have killed anyone, but plenty to show that orthodox medications have!!!
We shall all be thinking of you and be here for you as you go through radiotherapy.
Fond thoughts.
Sylvia xxxx
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Hello placid44,
Thank you for your very informative post. I agree that going through radiotherapy you need to be on a very healthy diet to try to keep your strength up while huge demands are being made on your body.
That information about antioxidant vitamins is very useful. Back in 2005 I was not given any information like that in the UK. It would be useful to have some posts from my fellow Brits to let us know what they are being told about what to do and what not to do, not only during radiotherapy but also through chemotherapy. Like this we can keep the thread up to date. To be successful the thread needs to be interactive and it is so useful to compare the information that is being given out in different countries.
Please keep us informed of your experiences during radiotherapy. There are now three of you posting, going through this treatment, so we can make useful comparisons.
Thinking of you and wishing you well.
Sylvia xxxx
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