Faslodex Girls Thread
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I had some severe lower back pain at about year 1. I did a full RX of PT which actually really helped. My PT was fabulous; far better than the average. She had me doing some strengthening exercises with bands, various routines using the wall or door jams to open up my shoulders, and then, a wonderful massage to loosen everything up. It was a wonderful experience and the benefits are still ongoing three years later.
Hope this helps,
*susan*
edited to add: Tina2 had some pain as well and didn't get as much relief as I did.
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Rose, I too have neuropathy in my feet, which began last spring. While my oncologist acknowledges some of the estrogen-deprivation issues that Faslodex can cause (weight gain, dry skin), he insists it does not cause neuropathy. He has ventured that perhaps my lumbar spine facet joint deterioration is to blame.
Soooo last spring I visited a neurologist who ran a bunch of blood and electronic tests and diagnosed neuropathy in my feet. She could give me no idea of what to do about it. (She suggested a night brace for the less bothersome problem in two fingers of both hands, which I rejected outright as too cumbersome.) She gave me a scrip for a battery of blood tests to get six months after my original appointment and I haven't filled it yet. At the moment I just don't have the heart/energy to start investigating the cause again, perhaps because there doesn't seem to be a solution.
Tina
P.S. On a brighter note, I just rubbed coconut oil into my hair in an attempt to fix my dry scalp. Now I smell like a Mounds bar.
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Thank you for your replies, Susan and Tina. Susan, that PT experience does sound wonderful… especially the massage part! I was scheduled for PT for upper back/ribs, but have put it off. I may add lower back/legs to the mix and give it a go now!
Tina, the coconut oil is wonderful for dry skin. I've used it as a body moisturizer for a few years now. And if you love Mounds bars, as I do, then it's win-win.
I'm off to do some yoga. Somehow sitting still for too long makes the pain worse.
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I am having a great deal of pain recently - mostly to a knee (my "good knee") and to my back/shoulder on the other side - I had just gotten a cortisone shot for my hip which has bothered me since AIs started 7 years ago (my how time flies) now my hip is fine but everything else hurts (I have had neuropathy in both feet since taxotere 7 years ago) - I am just a huge mess! Hoping that warmer weather will make things feel better - I am tired of pills, PT (which hasn't worked well for me) and just life in general right now.
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I hear you, Sandy! So sorry you've been having so much pain. Have you tried massage? It's a temporary fix for me, but it does feel good in the moment. I'm also trying this "Healing Touch," which is a combination of guided imagery and gentle massage. There's a lady here who offers free sessions through Stanford University. I'm not sure it's helping me, but hey, I'm so desperate now that I'll give anything a shot. I'm sick of pain pills too. Acupuncture may be next!
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hi everyone, have been off discussion boards for a while, mentally it is better for me. But, with that said ,I want to share couple things I have learned along the way w/ regard to faslodex . I went for 9 th round today. I inject myself on right side, I can better control my discomfort that way. By going very slow, usually over 3 min minimum, I have yet to get any lumps at my injection sites. My 19 yr old son actually went w/ me today and gave me my 2 nd injection & did very well. He wants to become MD some day, so figured it was good practice for him. I am still in Palbociclib clinical trial, not sure how much longer unfortunately, cause scan today is showing progression. If any one cares, I will let ya'll know what doc says tomorrow.
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Sue, of course we care. Keep us posted.
Slow and steady is definitely the best way to inject Faslodex, so it's great that you take three minutes. It's amazing that you are able to inject the Faslodex. And that your son is permitted to give it to you as well. In my experience only medical professionals administer it. How did you manage to get the opportunity to do it yourself?
Tina
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So sorry about pain and neuropathy some of you are having. I had neuropathy in my hands on Taxol and it stinks! Cymbalta helped me then, could that be an option for you?
Sue, sorry about the progression, hope that gets under control soon! I'm impressed that you can give yourself your own shots! How do you see what you're doing back there?
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I have stage 4 Breast cancer. Liver mets. I have been on Faslodex for about 10 months. My last pet scan was good. But tumor markers have been rising for about six months. Anyone ever have had this experience. Very worried
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Pop3 - I have only been on Faslodex for 2 months so can't answer your question but sure hope you find it isn't a big deal.
People talking about how differences in the way injections are given made me start looking for more information and I came up with the great article I thought I should share. I can't figure out how to make it a link you can just click on so I guess you will have to copy and paste
http://media.oncologynurseadvisor.com/documents/44/ona_feature0213_injections_10767.pdf
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Are any of you experiencing high white blood cell counts and high calcium levels? I'm on Faslodex/Xgeva combo, skin is dried out, and white cells and calcium levels have been high for last 3 months. Don't know if I should be worrying? Scans show tumors are stable.
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Pop3, I am on my 12th month of Faslodex and Palbociclib/Placebo in a clinical trial. I have had rising CA 27:29 and CEA tumor markers the whole time but my CT scans with contrast every 2 months show no progression and in fact very significant regression in the size of my lymph nodes being tracked by the trial. I know other women who are worried about rising TMs, but their scans are still stable or even better.
Pop3 I know how worrying tumor markers can be, but most oncologists feel that scan results and the patient's clinical presentation are more important than elevated tumor markers. It is true that many women feel their TMs always accurately predict a progression and often that progression is ultimately confirmed by scans. Most oncologists, however, feel that discontinuing a trial or changing treatment protocol should not be based only on rising TM's.
I will be getting scanned again next Wed and am also worried what results will be, but plan on holding to the course if the scans are still good and I have no new physical symptoms or acute changes in my sense of well-being. I already know I have metastatic cancer so don't expect normal tumor markers in my case, but I am hopeful it is my current treatment that has been preventing any progression for the last 12 months. Since I am on a CDK4/6 Inhibitor trial, the goal is not to cure the cancer but to prevent any new cancer from growing or existing cancer from progressing. Even so.....it is still very tough to see those marker numbers continue to rise every month!
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Pop 3 I have been on Faslodex for 4 treatments...I have continue this ...but I have been on other Chemo's along with it...Red Demon...and now Havaven...I have been experiencing my tm going up ...but my scans say something else...no growth...my fight is being able to have chemo due to my blood cts are to low...
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Pop3, thanks for your post. Am just shy of 3 months on Fas and my TMs have been going up about 200 with each blood test.
To quote my onc, I am data unsynced because he left me waiting for three weeks after my scans and before I started Fas. He was out of town. He thinks I should start a chemo. Gave me a list of what I might want to consider.
Based on what I have read from all of you, I'm staying with it. Feel pretty good but do hurt in the places I know I have bone lesions, not all the time. Kind roams around from place to place It helps to know someone else is making judgements on how they feel.
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Megc and Freebird53. We are staying with faslodex I wil have a pet scan the first of April and tumor markers checked. Praying it will continue to do its job. Praying for you all also that it will keep working for you also.
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I just received my first invoice from my insurance co stating what the Faslodex injections cost, $13,849, for the first two sets of shots, what my insurance company has discounted, and what I owe, a whopping $381.53. Unbelievable. This is not including blood work, doctors fees or cat scans. I don't know why Faslodex is so very expensive since the drug has been on the market for ten years. And I do know there is a generic name, Fulversant (phonetic) When I was taking Xgeva shots, they were around the same amount, $200. a month, but that drug is also very new on the market, now this. What is everyone else paying? How are people affording this? And I have good insurance as well, thru Blue Cross/Blue Shield. Input please?0 -
Naturegirl2, I'm sorry your costs are so high! I think a lot of it depends on your particular insurance plan and what state laws mandate coverege for. I also have BC/BS but obviously a different plan and I don't pay that for mine.
Sometimes there are drug coverage discounts through the drug companies, and you may also want to talk with your oncologist to see if there might be something cheaper that might work as well to try first?
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Yes, nature girl, that sounds true to my experience as well, BC/BS through my husband's company. I haven't seen the 13,000 figure, but I do have to pay about $381.53 (may even be exactly that) each month as well, now that my deductible is covered and I pay just 20%. Before the deductible, I have to pay $1,381 each month! ( I know, it doesn't add up) . And there's the Xgeva, too, although I have a discount for that after the deductible. We have an HSA in which we pay the full amount before the deductible of $4500 is reached and the 20% kicks in, so I get there really fast on Faslodex.
Hey, it's kept me alive so far, but yeah, it's really expensive. The drug companies have a good thing going.
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I hope someone works in the insurance industry can help us understand why the drug co. has to inflate the price so much. After my first Faslodex shots, I was required to go thru a "financial counseling" so that I could understand my financial responsibility! That's the time I leared Fas shots cost $1750 each time under my insurance. Later I learned that Xegeva costs $1800, and Zometa costa $450. That why my new insurance co required me to switch to Zometa, not until I had a bad reaction then permitted me to go back to Xegeva. I have HSA with high deductible plan, the first month of the year is always killing me financially! Fortunately after the deductible is met, rest year are free.
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Hmmmm, sounds a lot to me, 13.000 $.
We dont pay for healthcare/drugs here in Canada. ( Montreal.)
Its all free.
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My hospital is billed $7,000-ish, which is reduced to $2700-ish and I have no co-pay for treatment. But of course, the out of pocket expense is a function of your insurance, not the amount the hospital is billed. There is no generic equivalent to Faslodex. Fulversant is the chemical compound name, so there are no cheaper alternatives.
http://www.drugs.com/availability/generic-faslodex...
I am not sure that inflated is a word that makes sense to use when talking about drugs. Inflated from what? The way we pay for treatment and drugs in the country means that US patients underwrite the cost of research and development for drugs used all over the world. Other countries limit the amount that they will pay for any particular drug and can enforce this since the government buys the drugs for distribution. It is a crazy system.
*susan*
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I don't know that that's really a fair comparison, Mamita49. I'm sure there are better ways to allocate healthcare dollars than what we currently have in the US, but it's not like the drugs are just donated free to the country of Canada and passed out. Canada still pays for them out of money collected from Canadians and others doing business in Canada. It may not be direct or transparent and I agree with what Susan says about us underwriting a lot of the costs for non US use, but somebody's paying for your drugs.
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I am in Canada and am getting the drug from the drug company directly under "compassionate use" and here in Ontario people are paying for the drug - not sure how much but because I am a senior on limited income my onc applied for and got "compassionate" and I am very thankful for that. Quebec is obviously a different province with different coverage so don't know what's what there but believe me you're right someone is paying for the drug.
Now I need a little help with a problem I am having - anyone have a feeling like a pulled muscle in upper back - it is transient and moves from side to side - I have been having it since Wednesday (last Faslodex shots were on Tuesday) last night it became quite painful but now just that feeling - I've had pleura pneumonia (many years ago) and that's how it felt when it started but since then I've had pneumonia shot and now because it's the weekend and Sunday and that's when I've always had my panic anxiety attacks I am now thinking blood clots, etc., etc. going to call the PCP in the a.m. and get in there but wanted to know if anyone has had this se?????!
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Of course nothing is for free. Taxes........It depends on each province, on each country. Some countries have other priorities, education, security, defends, health care, transportation, you name it. ( We pay a lot for electricity and gaz, like no other country/province would pay for.) So its more like a give and take.
Here in Quebec, everybody gets the same health/ drug card for free, if you have no income or earn a lot, it does not matter.
I get my Faslodex at the pharmacy for free.
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Susan, I really used the wrong word for "inflate"' actually I used on the wrong party (drug co). I understand the R&D cost to be spread over the patent years in order to recoup the initial cost. What I really want to understand is why provider/hospital/ cancer center would not just bill the negotiated price, I.e. Faslodex for $1750, it has to file the insurance with $5,000+, then be cut down to " contract" price to pay. Once a procedure was not covered by my insurance, and the provider forced me to pay it at the billed price, which is more than double the insurance payment would be.
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Cling, it's because each insurer has a different contract with the hospital and will pay a different amount for things. Seriously. And it depends on which part of the country you live in. A hospital in Boston would be reimbursed more for administering Faslodex than a hospital in North Dakota. Whether BlueCross would pay the same for the drug in all parts of the country I don't know, but I suspect not. It's whatever they can negotiate with the hospital.
You might be able to get help [from the drug company] paying for it. Most companies have departments to help people pay. Call AstraZeneca. http://www.faslodex.com/breast-cancer-resources-and-communities/breast-cancer-patients.html has a phone number.
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Well, I'm a hot mess. I've got some weird things going on with my legs at night, neuropathy I'm guessing. But I spend hours lying down and getting up, lying down and getting up because the pain and tingling doesn't let me rest. Does anyone have this? I'm off Arimidex for a couple of weeks to see if that helps, but so far it hasn't. It must be the Faslodex causing it? And I'm experiencing nausea too, to the point of throwing up, which I think is my nerve damage but I never got sick before I started Faslodex. Ugh. I've called my onc. to push up my CT scan. It never ends!
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Isn't that what the commercials call Restless Leg Syndrome? I have no idea what causes it. No advice. None of your symptoms sound like anything I have experienced.
*susan*
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hello everyone, I am Stephanie and this last week was dx with stage 4 breast cancer. As of now my can cer is in my lungs. I am very scared as I am sure you all are. My questions is though, my oncologist threw this out to me right after telling me, but he wants me to do flasnodex injections to try and get rid of the cancer. I guess my quesiton is I have always done chemo. The hormone therapies didn't seem to work hence the 4th try. So why do more of the same. Maybe I am missing something.
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Steelrose - I've been on Arimidex before and before that Taxotere both of which gave me neuropathy - the taxotere has given it to me permanently however - I've had it for 7 years now. I am presently on Faslodex shots and the restless legs and cramps amped up - at the advice of my PCP and with my oncs. concurrence I am now on a very low dose of magnesium - they checked my mag level and it was in the high end of normal so the one low dose capsule is all that I needed to stop the worst of the muscle cramping - the dosage is 180 mg capsule once a day.
Please check with your drs. before starting this - both my drs. have seen patients who have take mega doses of magnesium and have had to be hospitalized - it can give you major diarrhea that can't be stopped without a visit to the hospital - I've seen on many threads that people are taking 8 to 10 times the amount - it's just dangerous.
After my second dose of Faslodex I had a day or two of feeling just lousy but now I have no se's - I took Zantac 75 twice a day for a couple of days and that controlled the nausea - hope this helps. Take care, S.
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