Calling all triple negative breast cancer patients in the UK
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Hola Marías,
Gracias por tu publicación. Me sorprendió mucho leer que tu madre está en Suecia. Supuse que ella estaba en Colombia. Me alegré de leer que ella está mejorando cada día. Me alegré de leer que ella está saliendo del hospital hoy.
Puedo entender que no podías ir a Sevilla y Granada cuando sabías que tu madre estaba en el hospital y cancelaste tu viaje a España.
Espero que tengas unas vacaciones en otro momento.
Estoy tan feliz de que estés mejorando.
Abrazos.
Sylvia xxxx
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Just stopping in to share that I saw the oncologist yesterday and I am clear of cancer, and as healthy as I could hope to be. Just got tumor marker results and they are both down, not to the level they were in January, but yesterday's blood work came less than two months after the last blood work which showed the rise. I have no idea how long it would take to get the values down. She still thinks I was wrong to opt out of chemo, so now it is just a matter of waiting to hear from her on what she thinks the next step should be.
I hope you are all managing okay; haven't had any time to read; we were at a funeral yesterday and now one tomorrow and one Friday which means a few days away from home. Will be in touch on the weekend I hope. Hugs to everyone.
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Goodness, fancy muddling up the doctor and a nurse. If they have two with the same name then it's an obvious pitfall for them to avoid.
More of interest in today's Times, warning about APPs which urge people with cancer to follow very-low-carb diets, saying that weight loss during chemo could aggravate side effects. Interestingly, the implication was that the heavier among us tend to suffer fewer or less debilitating side effects. Which might explain why I've been lucky so far!
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Your gardens are beautiful Sylvia - so colourful, cheerful and beautifully planned. This is a process I am learning in my own garden this year - it takes a lot of time, and energy especially when I take it on as my own project. But it is very rewarding and gives me joy and satisfaction.
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Hello everyone,
I am just pooping in to say that it is exactly 13 years today since I was diagnosed with breast cancer. I still remember that day vividly.
To those going through treatment, I hope this will give you encouragement that you can do it.
We do need to hear from new patients so that we keep up to date with what you are going through and any new questions that you may have about your treatment, side effects and how it is all affecting you.
Best wishes
Sylvia xxxx
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Hello Sylvia,
Congratulations! May you have many healthy years ahead to encourage us and guide us with your knowledge. God bless and wishing you and Raymond all the best .
Love
Jags
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Hi Silvia,
I “rang the bell” yesterday, after a long five months of treatment. It has been a roller coaster of side effects and emotional ups and downs.
I was dx with triple negative IDC shortly after my 60th birthday in late 2017. Had lumpectomy in January and began Chemotherapy in February 2018. Thankfully I had clean margins and clear lymph nodes after surgery, but high anxiety and fear of the future drove me to seek psychiatric counseling and a prescription of Ativan.
My MO had me stop all supplements and vitamins I was taking during treatment. Recently (about 10/12 taxol infusion), I developed neuropathy in my feet and hands. No pain, but numbness and tingling getting worse every day, making walking and everyday tasks difficult. MO did not reduce or stop taxol treatments, but prescribed gabapentin (300 mg 3x a day). I broke down and started taking medication yesterday. Normally, I am not one to take medicine and all of this is so new to me.
Now that chemo treatment is over, I am determined to take charge of my life through eating correctly, exercise and finding supplements and vitamins that will help me. I have been following this thread almost exclusively (reading things on the internet-even on this site, can be scary and sends my anxiety through the roof). I appreciate so much all the food, diet and other homeopathic ideas I learn here. I also enjoy reading posts from women several years past dx getting on with their lives-traveling, gardening,and.... well, living! Laying on my couch withparalyzed fear (and SE from treatment) I get hopeful for the future.
Thank you for this wonderful thread. Next up for me- radiation to begin some time in late July, lymphedema class (no signs of lymphedema yet) and appt with PT, mammogram appt for non-cancer breast (no scans have been done on left breast. Last mammo was June 2017. I found lump on right cancer breast 5 months later), and chemo follow up visit with MO.
XOXO
Monica from California
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Hi, Sylvia
The amount of pills prescribed seems large indeed, some cases might also be like my husband's. He had some pills prescribed by the General Practitioner, some by the Cardiologist and some by the Nephrologist. Occasionally someone would go over the list and remove or add something else. Some of them are probably effective and safe, but when combined with all the others it seems like it would be hard to judge it.
We hear such conflicting reports on many of these drugs. On the statins, doctors for the most part think they are wonder drugs, but homeopathic and natural practitioners warn of the side effects. With the stomach acid-blockers such as Prevacid and Nexium, they are widely prescribed and praised by docs, but I have read many bad reports if they are taken for too long. Yesterday for the first time I heard a commercial for a Personal-Injury law office, saying if you were prescribed either of these drugs and later had kidney damage or stomach cancer you should call their office. That usually means someone is bringing suit for something, whether it's all valid or not I don't know. It worries me because my brother is on a double dose of acid-blockers, and one of my close friends has been taking them for 10 years at least, along with other things. She was taking a diuretic for years, and didn't know why. The doctor finally looked at her and told her she had the skinniest ankles he had ever seen and told her to quit taking them.
I think the docs prescribe the anti-depressants because they think they should do something, anything and see them as harmless drugs. Some of the anti-d's also control some pain, and/or some nerve pain. I was prescribed one of these drugs after chemo when I was having intense pain. It was a combo of anti-depressant, anti-psychotic, and was a pain blocker. I did try it and it did indeed control pain, but it also made me feel so drugged that it wasn't worth it to me and I stopped them. Some people may find them to be very worthwhile.
I seem to be in a cycle of self-injury lately. I told you about my suspected broken toe. It has been almost 3 weeks and is now much better. I also, at about the same time cut my leg above the ankle on my dishwasher door (!), it was healing normally, I thought, and then I spent a couple of days in the pool on family trip and it got worse again, to the point I asked my family doc about it. He said it was concerning, to keep an eye on it and keep it clean. I am seeing improvement there now. Also, at about the same time I injured my left shoulder trying to use my weed-eater, so now I still have my injured right shoulder, and am suspecting I have done the same thing to my left shoulder! I have not got it looked at yet, but my massage therapist worked with it yesterday and suspects it is more than a pulled muscle, and is something deeper with the shoulder socket. To top it all off, I was coming in the house yesterday with arms full of bags, fumbled with the door, and stuck my foot in to hold the door, scraping my little toe sharply on metal edge. Guess what, I have another cut and another bruised toe! I have band-aids, antibacterial wash, hydrogen peroxide and Neosporin ointment lined up on the counter, no reason to put them away apparently! I also got stung by a wasp a couple of days ago, that seemed minor indeed since I am not allergic, it only hurt for a while. I hope to get through the rest of June with no more injury.
I'm glad to know you got the compression sleeve properly done, after 3 weeks. It sounds like it was very messed up, this happens so often, if you had not been very aware you might not have known.
Congratulations on 13 years! I hope there are many more women out there like you, who have been living on for many years after diagnosis. This TNBC diagnosis makes us all so time-conscious, which may be good in a way. I would love to know how much your survival length is because of your clean lifestyle, and how much is happenstance. I will never know the answer to that, all we can do is the best we know how to take care of ourselves, and you are a great example to all of us.
I am somewhat familiar with the dark staining on your lower legs. My husband had that too, and we never actually got a clear answer on what it was. He had so many worse problems it didn't seem too important. He also had it, not sure if it was the same thing, on his arms between hands and elbows, there the skin became even a darker shade. He had never been diagnosed with varicose veins, but might have had them. I definitely have them, and I wonder if that could be the reason for the slow healing on my ankle wound. As for calling what you have "venous eczema" or "stasis eczema", I find that very puzzlling, since my husband was diagnosed with eczema but it was a very itchy rash around his trunk and on his arms, that would get better in sunlight or UV rays! Eczema seems to be a catch-all term. Perhaps elevating your legs when sitting would be good for that problem, otherwise it seems to be another one of those things we can't do anything about. As for "keeping it moisturized", I wonder what difference that would make. It did seem as though my husband's leg skin was very dry, and mine is much drier than previous years.
We finally got some rain yesterday, and it has broken the dry, very hot spell we were under. For a little while, anyway.
I shall talk to you again soon, Yours carefully (haha), Mary
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Sylvia, congratulations on your 13 years. I wish you a long and happy life.
I was wondering whether our US posters think that US doctors over-prescribe because they're getting paid extra for every new drug they add? I don't mean that to sound critical in any way but your health system is so different from ours and I have no experience of yours. There are even cases where our NHS doctors are paid to over-medicalise us with things like statins and BP tablets and it must be much worse in an insurance-based system.
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Hello Monica,
I wanted to say thank you for your post and give you a warm welcome to our group. We shall do all we can to help you through your treatment.
I can understand what it has been like for you after going through five months of chemotherapy treatment and I can understand how long that time felt. For me during those six months of chemotherapy I thought it would never end. It is a long and stressful time, but you have come through it, so congratulations on that.
Try to relax now as you wait to start radiotherapy.
I think we can all understand the high anxiety and fear that you have experienced and can understand also that you decided to seek counselling. Did you find the counselling useful?
I understand perfectly about the neuropathy. I developed it in the feet after I had finished all my treatment and wondered what it was. My oncologist told me that it was due to the taxane drug, no ifs and buts about it. There are two taxane drugs, docetaxel (Taxotere) and paclitaxel (Taxol). I have had my feet tested by my regular podiatrist and she has also told me that it is peripheral neuropathy and that there is no cure. I found all this out back in 2006 and I felt that I should have been warned of this before treatment, so that I could make an informed choice. Did your oncologist mention this to you? With all that I now know, I think I would be telling my oncologist that I know about peripheral neuropathy and asking whether there is an alternative drug to the taxanes. I feel this is the only way to make progress.
I feel strongly about this because I know from my reading (NOT the internet) that the taxane drugs also cause lymphoedema. Another chronic condition with no cure.
What you describe about neuropathy the numbness and the tingling, is exactly what I have in my feet and I have had it since 2006. I keep my feet well moisturised with CCS Swedish Formula Foot Care Cream and I also use Dr Organics Moisturising cream. This neuropathy in the hands and feet is known as hands and feet syndrome.
Did you have your Taxol every week? I get the impression that you did because you had twelve infusions. Most of the women that have been through the thread have said they found weekly infusions easier to deal with than having the infusion every three weeks, as I did.
Before you started chemotherapy were you weighed and your height measured? It is useful for the thread to know if this is still being done, and if not, how is the dose decided? Before I started chemotherapy I had to give my weight and height and I was told that was how the dose was measured. It makes sense.
I do hope the neuropathy will ease a little as time goes by.
I was interested to know that you had been given the drug gabapentin, which is the generic name for Neurontin. I see from my medical book that this is another epileptic drug that is used for neuropathic pain, such as the pain suffered after shingles or by some people with diabetes. I have a friend who has long time pain from shingles and she was prescribed antiepileptics which she refused to take. I can understand your reluctance to take medication. All medication has side effects and the usual thing is to be given another medication to counteract those side effects and so the medical merry-go-round goes on! I have avoided medication all of my life, took only the minimum for a few days after chemotherapy infusions and took nothing extra and have taken nothing since. All I take is Solgar Bone Support for chemotherapy-induced osteoporosis and Solgar Vitamin D capsules.
I think you are doing the right thing to be determined to take charge of your life and to do it through healthy eating and exercise. If it were me I would keep the supplements to a minimum and just take what you feel would help to build up your immune system again. Vitamin is probably the most important and you might like to have your vitamin D level measured as many breast cancer patients have low vitamin D levels.
Did you have an ECG before your treatment? It is a good idea to have this to know if there is any difference before and after treatment.
I was so glad to know that you have enjoyed reading the posts. We have certainly discussed food and diet at great length and we have also talked about homoeopathy because I had it throughout my treatment.
We all try to make it relaxing and we talk about how we are living in our different countries, our families, our everyday ups and downs, travel, gardening, reading and so on. What are your particular interests?
Keep looking forward and telling yourself that you are going to get through this. Do not be frightened. All of us here are proof that there is life after a cancer diagnosis.
Thank you for your very kind words about the thread. It makes it all so worthwhile.
I do hope all will go well with your radiotherapy treatment. I was very interested to know that you are going to a lymphoedema class and I would very much like to know what it is all about and what you learn. Radiotherapy can cause lymphoedema, so it is good to have as much information as you can. If that were me I would be asking about the risk of lymphoedema from a lumpectomy, since you can get lymphoedema in the chest area. If I were you I would read the best possible book on lymphoedema, which is Let's Talk Lymphoedema – the essential guide to everything you need to know - by Professor Peter Mortimer and Gemma Levine. This professor teaches at one of the London hospitals here and my lymphoedema specialist says he is their Guru.
I do hope all will be well for you and I do hope you will stay with us. Look forward with confidence.
Very best wishes.
Sylvia xxxx
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Hello Susie,
Thank you for your first post and thank you for that information from the Times. It seems to be that very low carb diets are the flavour of the month lately. I believe in a mixed and varied diet such as is mentioned in the Mediterranean/Rainbow diet. I think everything in moderation is a good idea.
It does not seem to me that getting weight loss during chemotherapy is a good idea. You need all your strength to get through the toxic effects of chemotherapy. If that were me I would say just stay off junk food and eat proper healthy food.
I found that small healthy meals were the best way to get through. Of course, if you are overweight you do need to lose that weight at some point, but I am not sure that chemotherapy is the right time.
I do not know anything about being heavier enables a patient to suffer fewer side effects, but I would not think being painfully thin would be an advantage. Who knows?
Fond thoughts.
Sylvia xxxx
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Hello adagio,
Thank you for your kind words about the gardens. Like you, I do find gardening rewarding and as you say it give joy and satisfaction. I also find that it gives me peace of mind.
Fond thoughts.
Sylvia xxxx
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Hello Jags,
Many thanks for your congratulations and for your best wishes to Raymond and me. I do hope all is well with you.
Love.
Sylvia xxxx
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Hello 53nancy,
I was so glad to read that you had good news from your oncologist and that you are free of cancer.
Keep looking forward and enjoy life. You have managed to be in the clear without chemotherapy. I shall be very interested to know what your oncologist now suggests since she still thinks you were wrong to opt out of chemotherapy. Please keep us informed.
Love.
Sylvia xxxx
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Hello Mary and Susie,
Thank you for your latest posts. They are always interesting. I am out of time for today but hope to be able to do some more posts tomorrow.
Do you remember what is happening to Pam? We have not heard from her for a while and I hope she is OK. The last time we heard, I think, she was on holiday in Scotland and Ireland.
Talk to you soon.
Love.
Sylvia xxxx
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My water lilies are blooming well now, but they are being overtaken by water iris.
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This shows 2 water lilies, can't remember what blue flower is. The water iris has yellow flowers, but they flower early in Spring.
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The NHS website gives a 20% chance of developing secondary lymphoedema from docetaxal. I shall be sure to talk to the head chemo nurse about this next week before my first dose.
Meanwhile, Happy Summer Solstice!
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Hi, Susie
Happy Summer Solstice to you! Here it has felt like summer for a while already, now we are having a cool, rainy spell to start summer, fine with me!
I have always thought that people who carry extra weight seem to handle chemo much better. I haven't developed a good theory why, since we are all weighed and measured in height before dosing. One thing could be that fat weighs less than muscle, and perhaps extra fat has a way of absorbing the drugs. Another thing could be that a thin person might be already ill from the cancer, and just doesn't have the strength to tolerate it.
I hope you have an tolerable time with the docetaxel, I thought that the risks of getting lymphedema were higher with the surgery, and with the radiation than with the docetaxel, perhaps it is the combination of it all.
In reference to your question about US docs over-prescribing drugs, I just don't know about that. I tend to have the theory that most docs want to help patients, but often they are bound by the restrictions of Medicare and Insurance paying for services, and the patient might be unable to afford the best solution. Pills are relatively cheap. I have heard stories of docs receiving compensation from drug companies, but I don't know if these stories have any truth to them.
Mary
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Hello Mary,
Thank you for your post dated June 20th. I just have not had time today to sit down and reply. I shall try to catch up tomorrow, but if not it will be during the weekend. I thought the photographs you sent were really beautiful and a pleasure to look at.
I think the most useful thing to do with reference to lymphoedema is to read the book Let's Talk Lymphoedema – The essential guide to everything you need to know by Professor Peter Mortimer and Gemma Levine. Chapter 4 What causes lymphoedema? - is very important and gives all the facts very clearly, especially the part Cancer Treatment where it explains how the taxane drugs cause lymphoedema. The whole book is well worth reading and is a great reference book.
I hope to be in touch soon.
Love.
Sylvia xxxx
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Sylvia
I think I neglected to reply to your question about if I read Chris Woollams' latest report. I have not got through it all, there is an article on "the sacred plant", marijuana. Over here we get such mixed messages on its' use, benefits, good, bad and so on. Right now our state still find its' use illegal, and medical marijuana is only legal for severe seizures and ALS, I think.
There is also an article on the benefits of mothers' milk, to be more specific, colostrum and lactoferrin.
Another one is about a drug that has been around for a while being re-purposed to good effect. It is a drug given to opioid addicts that blocks the effects of the opioid drug, thus helping them withdraw. It has been found to have many other benefits that can help many other conditions, including cancer. It is low-dose Naltrexone.
https://www.canceractive.com/cancer-active-page-li...
I had also heard about grapefruit interfering with drug absorption some time ago, it can either enhance the effects of the drugs or dampen the effects.
There is also a brief article about a possible cause of ovarian cancer.
https://www.canceractive.com/cancer-active-page-li...
The flowering plants on your grounds are so beautiful, everything just looks perfect. That takes a lot of effort!
Talk soon, love, Mary
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Daylilies blooming
More daylilies, the pink one smells so good
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Hello Mary,
There is no doubt in my mind as far as pill prescribing on the NHS in the UK is concerned that there is way too much dishing out of pills. It seems that GPs have ages, that they get from who knows where, when they automatically put you on pills. Statins is a case in point. There also seems to be numbers that keep changing that will decide you have a certain disease and that puts you on pills. Numbers for blood sugar, cholesterol and blood pressure seem to change with the wind. I believe in the doctor that has programmes on television that is trying to get people off pills. He says there is no such thing as a pill that does not have side effects and that all pills have side effects and there are no exceptions. I think sometimes, especially here in the UK, that people want to swallow a pill rather than make an effort to eat properly and exercise physically and mentally. Each individual will have to decide what they want to do and whether they want join the merry-go-round of swallowing one pill and then swallowing others to keep counteracting the side effects of the preceding one. That is not for me.
I also think that doctors are probably encouraged to push drugs by the drug companies. Doctors will obviously praise the drugs they are prescribing.
I was sorry to read that you are having a string of accidents and I hope everything will heal in time.
Thank you for your kind words about my thirteen years survival. It does seem a long time ago and I have just got on and tried to live my life as normally as possible. I did not find the actual cancer journey and treatment too bad at the time, but I am not at all happy about the long term side effects done to my body, such as peripheral neuropathy and lymphoedema. I think all patients should be given ALL information before they start treatment. I also believe that integrative treatment is the way to go and that orthodox treatment should stop looking down on alternative treatments. I feel that the homoeopathy that I had must have helped in some way to make everything easier, especially Iscador (mistletoe) for five years.
As for venous eczema, which has various other names such as varicose eczema, you might like to look up the following articles under Patient – making lives better by Dr Oliver Starr 2nd November 2017. You will get the full story there, namely that it is a skin condition that mainly occurs in the elderly and ends up leaving brown stains. It is not painful, can be itchy but not necessarily and is not painful. The treatment is to keep your legs up when you are sitting down, to stay active and to apply moisturiser.
Varicose eczema happens when the pressure in the veins of the legs increases and causes changes in the skin.
I found the article very interesting and informative and there are many more details in the article than I can put here. It is very easy to read.
There is another article under NHS choices – Home – Health A-Z: Varicose eczema.
That is all for now in response to your post on June 20th. I am going through the thread trying to catch up.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for your congratulations on my reaching thirteen years since diagnosis.
I agree with everything you say about the incentive doctors are given to push for medicalisation of the population. I think it is going too far and less prescribing could help the NHS to start getting out of the mess it is in.
keep posting any information you get.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for your post quoting the NHS website giving a 20% chance of developing secondary lymphoedema from docetaxel (Taxotere). That will probably be the same for the other taxane paclitaxel (Taxol). I do not take much notice of percentages. Remember there is a high risk of lymphoedema from surgery, be it a lumpectomy or a mastectomy. There is a high risk of lymphoedema from radiotherapy, so if you add these two factors to the added one of the risk from the chemotherapy, I would think that makes lymphoedema quite a common long term side effect of our breast cancer treatment. I am wondering whether the lymphoedema risk from chemotherapy could come from anywhere in the body because chemotherapy is systemic. Who knows? I prefer to believe what I read in the book I have mentioned Let's Talk Lymphoedema – the essential guide to everything you need to know by Professor Peter Mortimer and Gemma Levine. It is divided into thirteen chapters that are easy to read and understand. Chapter 4 What causes lymphoedema? is of particular interest and there is a section on cancer treatment. It explains that it is the treatment of cancer rather than the disease itself that causes the problem. You will be particularly interested in reading the role of chemotherapy.
"It appears likely that taxanes, a widely used chemotherapy agent, increase the lymph load by making blood vessels in the arm release more fluid. This can overwhelm a lymph system already weakened by lymph gland removal and so cause lymphoedema".
Sending you fond thoughts.
Sylvia xxxx
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Hi
Your story of surviving 13 years after being diagnosed is is really inspirational, i have so many questions i would love to ask you if you dont mind?
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Hello Mary,
Thank you for your next post, commenting on Chris Woollams' latest email. Thank you for posting the details for everyone to read.
I was not that interested in this latest email, probably because I have had too much to do. There has been a lot of publicity about cannabis oil lately here because of some high profile cases.
Thank you for posting more photographs of your flowers. I find such photographs very therapeutic.
As far as cancer treatment goes, there seems to be a lot of pushing of immunotherapy drugs, but from the little I know, especially with my friend and neighbour who died after immunotherapy treatment, I reserve judgement. It still involves toxic drugs.
Keep well.
Love.
Sylvia xxxx
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Hello Ginette123,
Thank you for your post. Welcome to our thread. We would love to know about you and you are welcome to ask any questions that you like. We shall all try to help.
Best wishes.
Sylvia xxxx
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Hello everyone,
I am wondering what has happened to Pam, Hanieh, Kath, CocoonCat, Sarah, Sid and Marias. Please post and let us know all is well and whether you are still going to be posting or have moved on.
The thread will not continue if people just view.
Best wishes to everyone.
Sylvia xxxx
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Sylvia
I was wondering about those you mentioned. I hope they are well.
Statistics: I think they do us all a disservice. Why? They are only as good as the sample group. Some of these statistics are based on less than 100 people. Some even from trusted sources, are over 10 years old. I know most when first diagnosed need to hear the odds. They fluctuate, have errors, and if true, not all will fit into the matrix.
I cannot count how many times in my initial diagnosis process, that I was told how rare Inflammatory Bc is, and to not worry. I say this a lot: If you are in the percentage that gets it, recurs etc, then it's 100 percent to you. It was 100% for me. Along with Triple Negative. Old statistics said I would not make it a year, even with treatment. I'm cancer free, and approaching in November year 3.When I was first diagnosed, many of the stats on google were 10 years old.
That is why I appreciate you ladies on this thread. Some threads have become focused in my opinion with the quoting of stats .
Many new drugs mentioned in news outlets won't be available to the public for years, and provide false hope. You have to be able to filter the information and go with facts. Most of all listen to your body. Too much information from Dr. Google will definitely confuse.
Drugs, be it imunotherapy, taxanes etc, are still Drugs and toxic.
Of course this is all just my humble opinion. When we have so many that are surviving like Sylvia 13 years.
Please participate and keep this thread going. Its a lifeline, no matter if your process is just starting or you are years out from DX
Val
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