Faslodex Girls Thread
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I've been rubbing any kind of oil I can find (almond is good) into my nails and also keeping them very short - I used biotin a couple of years ago but it was getting expensive (seems a lot of people take it) my docs didn't think it worked but my pharm did - as for Dr. Oz - well..........
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Sandy - I know we have to remember Dr. Oz is a show of entertainment purposes... keeping that in mind .. some things are helpful. Also another oil that is helpful and plentiful is olive oil.0 -
Momonana6, thanks for your post. I only ended up having one weekly dose of Taxotere in December (they gave me this while pregnant and switched me to hormone therapy after I had baby, a week later). Didn't have any side effects from it (no hair loss, nothing). I took dose dense Taxotere for early stage BC 8 years ago and had every common and even several rare, freakish side effects. Worst chemo I have had. Am going to look into physical/occupational therapy for my arthritis-type symptoms. Great idea. Also need to get some yoga going on my own, which may help. I want to keep these side effects under control as I feel so fortunate to have hormone therapy as an option right now and my response to very extensive/aggressive mets has been immediate and phenomenal on hormone therapy.
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After a good 13 months of Faslodex, I found out today I'm officially out of the "fanny pack" thanks to some snew bone mets and a bunch of tiny and also new mets on my liver. It's still early progression by my onc feels it's not something we want to hold off acting on (my cancer is grade 3 and I think that may be driving things). So, as of tonight I'm on letrozole and in a few weeks we'll be adding the newly approved Ibrance.
Wishing you all great success with Faslodex. I've found this thread very helpful, expecially when I first started taking the drug, so I wanted to add a big THANK YOU, as well!
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RosesToeses,
As always, I hate to see another need to move onto a new treatment plan. All the best to you.
*susan*
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(((RosesToeses))) So sorry that you've had progression. I hope that your new treatment knocks it back quickly! I always appreciate your warm and supportive posts. Sending love and best wishes...
Rose
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RosesToeses, Hoping for the best for your new treatment. I'm sorry Fas didn't last longer.
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RosesToeses- So sorry. I know exactly how you feel because I'm in the very same place. Today I go in for what I believe will be my last Faslodex injections, and next Tuesday I have a 30 minute appointment with my oncologist to discuss the next step. He mentioned putting me on Ibrance and an AI, which I assume will be letrozole. He said to go ahead and keep the Fas appointment. I imagine it takes a little while to actually have the pills in hand after approvals and all, so I guess one last treatment makes sense. This is kind of a surreal place to be, as it's my first progression after my initial stage IV diagnosis, and the first time the cancer has left the bones. Like yours, my cancer is looking for a new home in my liver.
So I'll probably be joining the Ibrance thead in awhile. I hope you'll join, too, so we can support one another.
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RosesToeses - sending hugs and hoping the Ibrance will be gentle on you and kill all the little buggers!
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RosesToeses and sandilee - Hoping Ibrance works wonderfully for you both! Good luck!
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I am freaking out right about now. I had been having abrasiveness behind my bottom front teeth and decided to investigate with a flash light. I just cannot believe my eyes. It looks like where the enamel should be, there is a separation in color of yellow. I take very good care of my teeth. The last teeth cleaning was last November. I took Xgeva shots ( ten) and ended that last May. I had serious trouble with my tori (growth in palette of mouth and had to have a rotting bone removed due to Xgeva in January of this year from an oral surgeon.I would think the oral surgeon would have noticed this in January. I started with Faslodex shots Febuary 2nd of this year. Could this possibly be from Faslodex shots? Help please. Have others have/had this problem? I certainly do not want to loose all of my teeth. I am really bummed and frightened. I will call my dentist and hopefully he will see me in the morning or sometime tomorrow if they are not closed due to Good Friday.0 -
Thanks for the warm wishes, everyone. I'm a little freaked out but glad there are still lots of options to throw at this thing. Sandilee, here's to you and I hanging out on the Ibrance thread for years and years!
And wishing the rest of you great continued success with Faslodex!
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hello all,
I am confused! I occasionally see references in this thread to Faslodex causing "estrogen deprivation"? I thought that Faslodex allows your body to produce estrogen but disrupts estrogen receptors so...where does estrogen deprivation come in?
Thanks in advance for any insights
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GypsySue,
Faslodex is an "estrogen down-regulator." It interferes with hormone receptors so estrogen can't readily attach to them. While depriving an estrogen-dependent cancer of fuel, it also diminishes estrogen's good effects on the body.
http://www.faslodex.com/hormone-cancer-treatment/e...
Tina
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naturegirl2, based on the info about Faslodex and Xgeva, I would think this is caused by the Xgeva, not the Faslodex. Hope it can be fixed. Good luck!
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Rosestoses and Sandilee, words are failing me. The Fanny Pack will miss you so. I hope you new treatments treat you well.
Fondly,
Tina
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thank you! It sounds like fulvestrant affects all cells in the body that have estrogen receptors? Bummer. I was hoping that switching to fulvestrant would have a positive, or at least neutral effect on my bone density.
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GypsySue, yes. Fulvestrant affects all the estrogen receptors, which is good for confounding an estrogen-loving cancer, but probably not so great for other parts of our bodies. I take a lot of calcium with Vitamin D and hope that's good for for my bones. Do you have bone mets? I don't, so I can't speak to that. My last bone density scan several years ago showed osteopenia, which is simply thinning bones from aging. (IMHO osteopenia is a non-condition spotlighted by pharmaceutical companies to scare healthy people into taking bone-strengthening drugs better reserved for those with osteoporosis.)
If I were you, I'd go for what smacks down the cancer and ask my oncologist what to do to preserve or improve my done density.
Tina
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terri-c, thanks for your response and support. I will be seeing my dentist next week.0 -
Hi Tina,
I had a bone density scan at the start of my treatment (letrozole) in Dec 2013 which showed osteopenia. I had another scan in Dec 2014 which showed osteoporosis. At that point, my onc prescribed Zometa to which I had a severe reaction at which point my onc said we won't be doing Zometa anymore but did not suggest an alternative. He doesn't like to discuss details via email so I will be discussing this with him at our next appointment. In the meantime, I'm just trying to familiarize myself with possible alternatives. I will ask about xgeva but would prefer a cancer treatment that does not accelerate bone loss in the first place. I know this is probably just wishful thinking but I need to at least have the peace of mind that comes from exploring what other treatments are out there.
In answer to your question, i had a single met in my T5 vertebra at initial diagnosis which went away after the 1st 3 months on letrozole. I have no other mets, bone or otherwise, at this time that I know of. Next PET scan is end of April. Letrozole has kept me stable for 16 months for which I am very grateful.
Thanks so much for your excellent insights!
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thank you so much for this blog, it has helped me tremendously. I am on Faslodex for a phase III clinical trial and trying to discern what is side - effects from treatment or just lack of estrogen or am I just anxious about my diagnosis has been difficult!
After 6 weeks of Faslodex, the tumor is shrinking and the doctors are thrilled, as am I
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Wonderkat - Awesome! Hope it keeps working great for you for a long time! I get my second set of injections Thursday. Then a bone scan on Friday. Can I ask where your mets are? Mine are lungs and newly dx with liver mets.Cathy
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Wonderkat, that's great. Here's hoping Faslodex keeps up the good work for a very long time!
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Wonderkat - terrific news!
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FYI- I went to my dentist yesterday and earlier during the week to for an appt. with my oncologist who I showed my teeth to. Oncol. said he has never heard of Faslodex doing that. Neither has he seen, in his experience, Xgeva doing that. He suggested I see my dentist. I filled in my dentist as to what cancer treatment I am currently taking. He took one look at my teeth and told me it is the Perodex I am using that has caused a heavy plaque/tarter buildup. My oral surgeon prescribed Perodex last Sept. due to the tori problem I was having due to taking Xgeva shots. I was so relieved to find out my teeth were not rotting. It took the dental hygienist close to two hours to debride my teeth. Whew.
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Today was my 63rd and final Faslodex. This week's scan confirmed what was seen three months ago. My cancer is on the move. All the pleura and chest wall lymph nodes have grown. The anomaly on my left rib has grown, and now there is a clear met in a right rib as well. The final finding was that there is also a "focal Point" in the liver and an MRI is suggested to make a determination.
Based on this scan, oncologist will move me to Xeloda though she left the door open to make a different suggestion if the liver focal looks like cancer. I will wait to have the MRI for my return from vacation.
All the best to the Fanny Pack. I have been so lucky to be part of this group for such a long time, and I wish the same for each of you.
*susan*
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Susan,
So. It is as you had expected. Time to deploy another arrow from what I hope is still a full quiver of possible treatments.
But first, your fantastic vacation! Bon voyage, my friend.
You may be departing the Fanny Pack, but I'm sticking with you.
Tina
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Susan, I'm sorry. I know this was what you expected but not what you hoped for.
Have a fabulous vacation and try not to think about it.
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Susan,
May your next treatment beat those mets back quickly! You were diagnosed just a few months after I was in 2010. We've got to represent for another 5 years!!!
Have a wonderful vacation… eat, drink, and be merry. And thank you for all your input here… as a new "Fanny Pack" member, I appreciate it.
Rose.
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Susan, I'm so sorry you're leaving, too! Five years was a good run of it and here's hoping you get at least that many more on the new stuff--after a fabulous vacation, that is
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