Afinitor/Aromasin
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Thank for the info. My oncologist office gave me several places to donate the meds but none of them take cancer meds, nor does my pharmacist. However, I reached to the hospital. While they can't accept the meds for donation, they will accept them for proper disposal. Such a shame that this meds can help someone but it needs to be destroyed. Hope all of you are doing good for many years to come
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Bumping!
best, Stephanie
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A brief update. My wife has been on A/A + ribociclib for a trial and has completed one cycle. Unfortunately, her gastrointestinal issues (inability to eat solid food of any significant quantity, constipation, and some nausea) have continued and she has lost a lot of weight (and was already quite small). We just found out yesterday that her tumor markers have continued to rise (15-3 was up more than 50% from where it was 2 weeks ago), so her MO has decided to move up her scheduled scan and is requesting a CT scan ASAP. Because she previously had a brain met that was treated (so far successfully) with SRS, they want to move up the brain MRI also to rule out brain mets as a cause of the nausea. We haven't confirmed it yet, but it doesn't look like A/A has proven very successful for us.
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no wants to keep me on A/A despite 5new skull lessions.My pet showed spots on hip and c6 are smaller. I am not so sure. I plan to reviwe with a different MO.
Hmm
Peace to all
Mary
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As soon as my insurance approves this, I will be starting this combo. Pretty nervous about the side effects. Hopefully I will be able to tolerate it. Any advice from those of you on this? Best wishes to eve
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Hi all, firstly thank you so much to Longtermsurvivor (Stephanie) for pointing me in the direction of this thread. I have been reading the last few pages of posts and saw the trial outcomes which Stephanie kindly also posted. You amaze and inspire me Stephanie . I have read all the posts on our belly mets group thread and you always provide factual, unemotional advice and information. I know this has been such a horrible, long hard road for you but the support you have provided to everyone on this and the belly mets thread is so very much appreciated. Sending you healing thoughts, big hugs and hopes for a decent QOL.
I have been on this drug combo for a week since being diagnosed with mets to the bones and omentum. Prior to that I had 7 years NED (amazing how quickly all these abbreviations become second nature when you jump on the cancer train again) and have been taking Tamoxifen since first diagnosed in 2009.
So far, I just have some mouth ulcers which I'm treating with the dexamethasone mouth wash prescribed. I feel more tired than usual but that could also be the shock of this new diagnosis combined with working full time and house guests the last two weekends!
I am taking 10mg of Afinitor daily plus the extemestane. I am due to have my first xgeva injection on the 18th and am having a bone scan today.
I have read many posts about the fear of Se with Afinitor but I'm going to give it my best shot. I'll let you know how I go. In the meantime, I hope everyone has a good day and whatever treatment plan you are on stops progression whilst also allowing you a good QOL,
Cheers, Judy
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Well, we did not get the news we hoped for. One of her liver tumors decreased, but three increased, albeit less than 20%, so she didn't get booted from the A/A + ribociclib trial. However, we found out today that she's got a new brain lesion (still small at 4 mm) that wasn't there at the end of June, so now she's off the trial and starting Xeloda this week. We're meeting with the MO this week and will hopefully have something scheduled with the RO soon. Hoping we can just SRS this one like the last one. Anyway, our time with A/A was pretty limited. Hope others have more luck.
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So I started the A/A combo on Tuesday. Six days into it and so far so good. I do have fatigue and muscle aches but it's manageable. Seems like I have a headache most days, sure hoping it's from the drugs and not something else. Doesn't seem like too many people are taking this combo, I sure would like to hear some success stories. Wishing you all the best.
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I am on my second cycle on this combo taking a break from Xeloda which was very successful in making bone mets stable. So far on the A/A I am less tired which is great I have a few mouth sores but nothing really bad. The next best thing is no blood work or Dr appt for 3 months we travel to Cevelad Clinic which is about 2 1/2 hrs away.but they are worth the travel. I hate not knowing if it is actually working but my Dr said it is slow acting but a couple of places I had some pain has improved so hopefully that's good news. Good luck on this combo
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Well I have been on Afinitor and Exemestane for just over 2 weeks now. I'm not managing it at all well. I have four very large mouth ulcers which, even with 2 different prescription mouth washes , is so painful I can't eat . I've been drinking smoothies and juices (with loads of ice!) and this has helped replace nutrition. On the plus side I'm the lowest weight I've ever been!
I am also really tired and either collapse into bed straight after work or don't make it to work at all.
I'm seeing the oncologist tomorrow but feel really miserable when I think this is how my QOL might be going forward. I hope they can put me on something that is more tolerable.
Cheers, Judy
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Kandy - I too have headaches most days and was thinking just the same thoughts as you! I think it might also be because Afinitor raises your blood pressure ? Maybe these are high blood pressure headaches? Anyway I will check with my Dr tomorrow and let you know what she says
Cheers Judy
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Judy, thanks for letting me know you also have headaches. Some days mine are just horrible. How much water are you drinking?
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I drink at least a litre a day and I'm taking paracetamol every six hours to combat the headache. I had Yesterday and today off work because I'm just so wiped out with the headaches, mouth ulcers and general tiredness. I don't think this drug combo is the one for me. I can't function normally on it
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Maybe try increasing your fluid intake. My Dr said to drink at least a gallon of water a day. He said that if you did, that there was less side effects. I have been on it a week and I don't have any ulcers. How long after you started taking it, did that happen?
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I got the mouth ulcers after about 5 days. I will try increasing my fluid intake. Anything to help get rid of these wretched SE. Thanks Kandy. I hope you are doing well. Xx
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Well I saw the oncologist today and will now stop Afinitor until the mouth ulcers heal. Then I'm starting again with a 5mg dose (I was on 10mg). My blood pressure was 160/90 so a little high. The headaches could be from this or stress. But I'm having a head CT scan tomorrow just to rule out anything happening in there. I had the first Xgeva injection today. The Dr said to take the rest of the week off work (she actually said 2 weeks, but I hope to be feeling much better by next week) . I'm sure I will feel on top of the world when the mouth ulcers heal up !
My bone scan results were good but my CA15-3 has risen from 17 to 22 in three weeks 'My Dr said she doesn't take much notice of these readings as they are not an accurate indicator of what's going on. So I'm not worrying about this.
Cheers Judy
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Hi, as of Feb. 2016, I've started into my fourth year on this protocol. I also have Xgeva shots quartet now. I started on 10 mg and I experienced the acne, headache and mouth soars side effects. I went to 5 mg til those side effects went away. Now, I'm on 7.5 afinitor and 25 mg aromasin. Headaches went away as well as the mouth soars. Acne has been reduced, thanks to the lower dosage and dermatologist interventions. Not Ned but stable until 2 new small cancerous nodes in lung pluera. MO says slow growing not changing protocol yet. Another PET in December. Hang in there! Suz
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I am on this combo since almost a year, and I do very well. I started NED alreaddy last November, when Faslodex failed. Just had one node with cancer.
Had then 3x radiation, started Afinitor/Aromasin, had meanwhile 2 scans, all clear so far.
Just had another scan last week, will have results in 2 weeks, since doc is on vacation.
I feel really good, have no issues.
Could need some positive wibes for my scan results, like to be on this combo for a long time.
Best Carol
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So glad to hear others are on this combo, thanks for joining in.
Suz, wow 4 years, that is awesome. I hope you continue to do that well.
Carol, so happy to hear you are also doing well. I hope your scan shows nothing new.
Judy, I hate those mouth sores are giving you so much trouble. Hopefully the break will help. Are you trying the baking soda/ salt rinses? Magic mouthwash? Have you tried putting the pill in marshmallow cream? I was already a big water drinker, so that requirement wasn't an issue. But when I take the pill, I drink about 10 ounces to chase it. During the day I drink at least 10 bottles of water, maybe more. I hope some of these tips will help. I hope you get some rest during your mini vacation.
Wishing everyone the best.
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Hi Kandy,
Don't much like to give pro or con health advice, but want to make sure you know about drinking safely bottled/filtered water from glass, not plastic bottles.
Warm healing wishes, Stephanie
From BreastCancer.org:
Exposure to Chemicals in Plastic
http://www.breastcancer.org/risk/factors/plastic
xxx
Form LiveStrong website:
Health Effects of Plastic Water Bottles
by EMILY BEACH Last Updated: Dec 28, 2015
Overview
Some types of plastic water bottles contain chemicals that may leach into your drinking water. Bisphenol A, or BPA, is one of the most commonly cited culprits, and is found in hard plastic bottles marked with plastic code "7." Other plastics also pose a potential health threat. According to CBC News, Canada banned the use of BPA in October 2008 so the full health effects could be explored further. Bottles containing BPA are also prohibited in Japan, according to Scientific American, though as of 2010 they are still widely used in the United States and other parts of the world.
Development and Fertility Effects
The BPA used in Type 7 plastic water bottles is linked to a number of potential complications for pregnant women and the fetus. According to CBC News, BPA acts as a faux-estrogen, and can cause chromosomal abnormalities. These abnormalities are tied to birth defects and developmental disabilities in utero and childhood. Exposure to these faux-estrogens while in the womb can cause early onset of puberty and increase the infant's risk of prostate or breast cancer as an adult. It may also affect the future fertility levels of a female fetus. CBC News also reports potential links between BPA exposure and hyperactivity disorders and aggressive behaviors in young girls.
Higher Rates of Diseases for Adults
Water bottles containing BPA have also been linked to increased rates of disease in adults. According to CBC News, humans with the highest concentrations of BPA in their urine are three times more likely to suffer from cardiovascular disease and 2.4 times more likely to have Type 2 diabetes than people with low BPA concentrations.
According to CBC News, BPA exposure is also tied to breast, prostate and ovarian cancer, though further research is needed to fully explore this subject.Exposure to Bacteria
Bottles marked as Type 1 plastic are made from polyethylene terephthalate, or PET. These are the soft plastic bottles most commonly used for bottled water. PET bottles contain no BPA or faux-estrogen, but do pose potential health risks. According to North Dakota State University, these bottles are often linked to bacterial contamination when they are re-used. This is primarily due to the bottle's design, which makes it difficult to properly clean the bottle for reuse. North Dakota State University reports that when used Type 1 bottles are tested for cleanliness, 13 percent are found to contain germs from food or saliva while another 9 percent contain fecal matter.
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Stephanie, doesn't it say that the plastic for bottled water is okay, just not to reuse it? I have also heard the dangers of plastic, it's interesting to me. Thanks for your input, you are a wealth of knowledge.
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Hi Kandy,
Have you thought about a water filter for your tap water?
If you must go with water in plastic bottles, be sure to drink the whole bottle in one sitting and never leave it sitting in the sun. Bacteria builds up in the former and plastic residue in the latter.
I avoid plastic touching my skin, food, water or other drinks.
And everyone knows about the danger of using any type of plastic in microwaves, right? You don't need to breathe it, eat it or drink it.
I've had an oxygen compressor at home for a month without turning it on, but right away I unwrapped the nasal cannula and am allowing it to outgas.
Your hippie friend from California
, Stephanie0 -
Thanks Suz and Carol for joining in - it was really great to hear that you have been on this combo for 4 years Suz. It gives me great hope that if I get rid of the mouth ulcers and start at a lower dose ( as you did) that it will work for me.
Carol I'm sending you positive thoughts for your forthcoming scan. It's always a worrying time when we have to go for scans but this is supposed to be a great drug combo which is very effective at kicking cancers butt so the result should be a good one.
Kandy I keep reminding myself of your advice to drink more water. I don't think I'm drinking nearly enough !
Hugs and healing wishes to you all, Judy
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Stephanie, I buy bottled water, I never refill them.
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Kandy, I think from your reply you're drinking water bottled individually in plastic, not glass? Or a large dispenser?
Our lives are so filled with stressors, including toxins, and we each much choose for ourselves what levels of risk we're willing to take in all we do or don't do.
I try to change the things I can, because there are so many things I can't change.
Maybe it's a placebo power of doing something to help myself, even if the sum benefit is small.
I still eat potato chips - organic ones, yes - when I know fried foods aren't healthy. They make me happy and I choose happiness over health - sometimes.
Kandy, you have my greatest respect for what you've already got on your plate and don't want to cut off what's in your water bottle too.
Get informed and take whatever actions feel best to you...then let go of any guilt, shame or self-blame.
If it makes you happy and you aren't hurting anyone, do it!
all forgiveness all the time, Stephanie
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Stephanie, I do drink bottled water packaged individually, they are the soft plastic that you can crunch in one hand, lol. By your article, it states that they are a potential health risk cause of reuse, which I never do. So I'm just wondering if I am reading that correctly or not? Lord knows I need all the help I can get to stay here as long as possible. Thanks for all your input.
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Hi Kandy,
I knew I'd read it somewhere and can't find the original reference.
Here's something:
Adverse Health Effects of Plastics
http://ecologycenter.org/factsheets/adverse-health...
Polyethelyne (#1 PET) Water and soda bottles, carpet fiber, chewing gum, coffee stirrers, drinking glasses, food containers and wrappers, heat-sealed plastic packaging, kitchenware, plastic bags, squeeze bottles, toys Suspected human carcinogen 0 -
And something more:
How To Recognize the Plastics That Are Hazardous To Your Health
Plastic #1: Polyethylene Terephthalate (PET)
>http://io9.gizmodo.com/how-to-recognize-the-plasti...These plastics are typically used to hold soft drinks, water, juice, sports drinks, beer, mouthwash, ketchup, and salad dressing. They're also used as containers for peanut butter, jelly, jam, and pickles. This type is also used in oven-friendly film and microwavable food trays.
This plastic is considered to be safe, but there are some issues to be aware of.
The primary problem is that antimony, a metalloid element with toxic qualities, leaches from PET. The rate of leakage increases with temperature. Normally, the amount of antimony that seeps into liquid is well below the U.S. Environmental Protection Agency's maximum contaminant level. But that assumes the container stays at room temperature.
According to the U.S. Center for Disease Control (CDC), antimony can cause acute and chronic health issues, such as diarrhea, vomiting, and stomach ulcers.
Studies indicate that storage of these bottles at extended periods of time, and at increased temperatures, can result in unhealthy amounts of antimony. For example, a bottle stored at 60 degrees C for 176 days will yield unhealthy levels (maximum contaminant level (MCL) of 6 ppb), as would a bottle stored at 85 degrees C for just 1.3 days. These are very reasonable temperatures, and could typically be reached in warm garages or cars in the summertime.
Three years ago, a study showed that microwaving can significantly increase the rate at which antimony leaches into PET bottles. The authors recommended that plastic bottle manufacturers wash bottles before first use to remove metal contaminants like antimony.
And in 2012, a study indicated that, in addition to antimony, brominated compounds can also leach into PET bottles. Bromine, a naturally occurring element that is a liquid at room temperature, can irritate the skin, mucous membranes, and tissues. But it's not clear from the study if the concentrations of leaked bromine are at dangerous levels.
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and another resource you may want to follow up on:
1 October 2015
How harmful is it to drink from a plastic water bottle?
http://www.newstatesman.com/science-tech/technolog...
Polyethylene terephthalate (PET) is the main polymer used to produce plastic bottles, and has previously been shown to affect the hormonal system.
Polyethylene Terephthalate May Yield Endocrine Disruptors
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC28547...
xxx
Again, dear Kandy, I believe there are thousands of stressors and toxins affecting us all day every day. Trying to eliminate or avoid them all is impossible and makes for paranoid living.
Better to choose happiness and balance over rigid avoidance...but if it's easy to let go, why not?
for your entertainment and education
There are plenty of other, similar websites that a simple google search can find.
all healing all the time, Stephanie
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Thanks Stephanie, I find the theory of plastic causing cancer very interesting. In this day and time, we definitely live in the world of plastic instead of glass. Wishing you the best
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