Early Days on Letrozole
So, I started taking Letrozole on the 1/6/18. My oncologist says I have to be on it for 10 years as several ongoing studies are indicating cancer preventing benefits beyond the seven year mark. It's a watching brief though, so I'm prepared that the advice might change in this time. Three days after starting it my ankles started to ache. A lot. It got worse and started to wake me up at night. Whether I exercised or not didn't make any difference. I took some osteo-panadol for when it was really painful but I didn't fancy living on that, so on the advice of many people here, and my oncologist, I started taking krill oil. Within a few days the pain was down to a manageable level. Hooray! Three weeks later though the ache ramped up. At exactly the same time my hot flushes, which had subsided to a bearable level after chemo, suddenly got a lot worse. Longer, stronger and now with extra bonus sweat! I persisted with the krill oil for another week but there was no change. So in my personal clinical trial, I came off the krill oil for a (painful) week, and then started magnesium. Again on the anecdotal evidence from the good folk here, many of whom say it helps. I also had a foot, ankle and lower leg massage at one of those mall massage joints on the same day as I started magnesium. It was utter bliss having my aching ankles worked on! Something changed, because again the ankle pain subsided to a bearable level. Now whether this was something to do with the massage, or the magnesium, a combination of both, or my body simply adjusting to the rapid withdrawal of oestrogen, I simply don't know. My oncologist says no evidence that magnesium works on anything other than cramps. However I'll keep taking it for a couole more weeks and then stop. I'll observe what happens and then, if the pain returns, I'll move on to the next thing in my 'clinical trial', which is curcumin. The onc says her patients have reported success with that. There'll be a magnesium spray test at some point as well! My ankles still ache but it's at a lower level at the moment. All our bodies are different, der, but I thought I'd share my experiments in managing Letrozole side effects. It might be useful to someone! K xox
To chemo or not to chemo
Hi there, any thoughts on this would be appreciated. My early breast cancer is: no node involvement, no blood / vascular involvement detected, HER2 negative. I've had a complete single mastectomy. The invasive mass was 10mm, grade 3. But there were also 3 non-invasive, (grade 2 or lower / DCIS) masses of ~5mm size. I have smaller, dense boobs - so they took the whole thing. Now, I've been told that my 10 yr prognosis with hormone therapy is 83-88% depending on how they describe the mass - which as you see - didn't fit neatly into categories. Chemo would only add 2-3% to that - maybe. Whereas there are all sorts of short, medium & long term potential risks with chemo. So my initial gut reaction was - hell no. The oncologist says I'm really 'on the fence' as to if chemo is worth it at all. She's left it up to me. I'm pretty sure I'd rather invest in nurturing my body - you know, fitness, good food and stress management, which could equal the 2-3% benefit anyway. I know there's no guarantees either way. Anyone been in similar situation??
Thermal Hot Springs and Massage Treatments
Well its over a year since I finished Chemo, Radiation and Surgery. We are now SKIing, my first trip to Europe. It now seems that once you have had cancer no health centre will do any Beauty Treatments. I have been on Dr Google and it's very unclear. I contracted a Spa in Budapest and oh no, no treatments for you, see your Oncologist. Well I see her just before I go, I still have a port, as there is some uncertainty, but who cares about that small issue. I wondered if anyone has thoughts about this issue, I still want to try the thermal springs, and being sensible,I won't choose the hottest pool. I suppose I will just have to go in undercover in the pool, but hard to do that for a health mud body wash. But seriously, Is it true that cancer spreads by massage?? They certainly seem to think they will get sued, but all is forgiven if I survive 5 years, then I might just scrape in.....lol.
other treatment options?
I am 55 and just diagnosed, a couple of weeks ago, with iDC, i was really hoping it would have been insitu still, but not to be. I am booked for a mastectomy on the 20th (2 weeks eeek). The biopsy said high grade on Nottingham scale, hence the decision for a mastectomy over a lumpectomy. ok here we go. Has anyone heard of black salve???? its apparently a paste that you can apply to the cancer and it draws on the cancer cells, pulling it all out like a plug????? sounds too good to be true? has anyone done any reading on it?
Help test a new online database that shows interactions between cancer medicines, herbs & vitamins
Hi all, Researchers at Satori Medicine, an independent consulting group, in collaboration with an Expert Committee comprising of consumer representatives, including consumer representatives from Breast Cancer Network Australia, health professionals and other researchers are conducting a study to test, evaluate and report on the usefulness of IMgateway, which is an evidence-based database that has already been utilised by doctors and pharmacists for 18 years. The database provides information about interactions between pharmaceutical drugs and complementary medicines. The researchers are working to adapt the database so that it is directly available to consumers including Australians diagnosed with cancer. They are inviting you to test the suitability of this adapted database for consumer use and provide feedback about its usefulness. The researchers will collate and analyse the results from the information you provide and prepare a published report. About the IMgateway database The adapted database will allow people affected by cancer to enter the name of a pharmaceutical drug or a complementary medicine (e.g. a herb, vitamin, mineral or food) and receive information about potential interactions that may interfere with the effectiveness of the drug. For example, if you are taking an aromatase inhibitor and considering whether or not to take vitamin D, by using the database you can find information about whether or not vitamin D may interfere with the effectiveness of the aromatase inhibitor. Who can participate? You can participate in this study if you: have been diagnosed with breast cancer, or are a carer are comfortable reading and writing in English. What does the study involve? The survey will take approximately 15 to 20 minutes to complete and your responses will be confidential. You will be asked to complete an online survey. The survey includes several general questions, such as: Whether or not you use (or have used) a complementary medicine. Where you would go for information about complementary medicines (e.g. your doctor, friends, online, family). Whether you are concerned about possible interactions between cancer medicines and complementary medicines. You will then be presented with a short, fictional scenario of a patient who is taking two pharmaceutical drugs and is considering taking two specified complementary medicines. You will be asked to use the online IMgateway database to see whether there are any interactions between the drugs and the complementary medicines. You will also be asked to provide feedback about the database and how easy it was to complete the task. How do I take part? If you are interested in taking part in the survey, please click the following link which provides a Participant Information Form providing details about the study: https://www.bcna.org.au/media/7146/participant-information-form_10-feb-2019-final.pdf. Once you have read the Participant Information Form and you consent to take part in the survey, then click the Survey link below. Please take the survey by 27 February 2019 on a computer and not on a phone or tablet. Survey Link By clicking this link you are indicating that you have read the Participant Information Form and consent to take part in the survey: https://www.surveymonkey.com/r/6D3SDKT. Privacy Your name and any other identifying information is not asked for in the questionnaire. The data collected will be reported as aggregated data. Any quotes used from answers given to any of the questions will not be able to identify any individual. By taking this survey you are providing your consent (agreement) for the researchers to collect and store your answers on Survey Monkey’s overseas server (large computer). For further information on BCNA’s Privacy Statement please click here. For a copy of SurveyMonkey’s Privacy Statement please click here. Thanks so much for considering this opportunity!
Alternatives to Zoladex and Tamoxifan? & Genetic Testing for Drug Metabolism
Hi all, Who has had Genetic Testing for Drug Metabolism? I have and it has been spot on with understanding why over the years I have had sooo many side effects with different drugs. At this stage the testing is not covering every medication, but it is improving it's data base the more people do the test. It has been helpful when I have had my lumpectomy, my anesthetist tailor made my drug regime and I had no horrible side effects from the sedation or pain killers. I was also able to see that Tamoxifen is a no go for me. I was interested to see why, so I rang the genetic testing company to see why it came up as Red when I typed it in on my report. They told me that I may or may not have side effects, but I will not metabolise the drug to make the effective ingredient for it to work. I have told my onlocolgist this, and she is insisting I try it. I had severe side effects with Zoladex, the physical, while crappy, I could put up with. But the mental side effects were debilitating; Severe Depression, Anger, Irrationality etc, hence we did not start the aromatse inhibitors. My oncologist used a tool on the web (I think this has be spoken about in another post) and said that if I stopped taking the Zoladex that my 10 year survial rate would decrease by 2.7%. I was willing to take those odds, and we both agreed to stop the Zoladex. But my last visit, she wants me to start the Tamoxifen, because, some women do not have any troubles with it. :/ Again I do not want to, because 1. my genetic test and the company say that studies show that my genetic make up will not metabolize the drug to make the effective ingreadient; and 2. I do not want to add to the horrid mental side effects that I am experiencing ( A little less now that I am not on Zoledex) but still life disruptive. Because of my Genetic make up, I can't take nearly all of the antidpressents used to treat the side effects either. Im about ready to find another oncologist that will listen. What other alternatives to Tamoxifen are there? Other than Zoladex and Aromatase Inhibitors? Is anyone out there not taking anything at all? Thankyou for letting me rant, xo Heres a link to the genetic testing I had done if anyone is interested. https://www.mydna.life/medication/
Has anyone tried acupuncture for lymph build-up ?
I had a non-skin-sparing and non-nipple-sparing mastectomy in late 2014. (No reconstruction was offered). I have been seeing a masseur for the treatment of fluid build-up and she used the Chinese cups when it was really bad. I have now moved and have not been able to find a reasonably-priced masseur with the remedial training. An acupuncturist has been recommended. If you have had acupuncture for this can you please let me know how often you need it to be done ? Thanks in advance Summer
The things people say
Someone posted this link on fb. Enjoyed it and sharing for you all. 3 weeks ago someone suggested i juice 8 times a day, especially carrot juice. Ive been given crystals, essential oils. I was warned by well meaning friend about chemo - err sorry I said, Id like to give myself a chance. Someone else said to me "if you ever need go talk....i have a friend who had breast cancer 10 years ago, actually she has died". Bit of a conversation stopper. What are some if your real liffe conversation killers? https://m.youtube.com/watch?v=mKovm8HINjI&noapp=1
