Faslodex Girls Thread 2014

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited December 2014

    Valerie,

    This is EXCELLENT! As I said earlier, it can cost some money, but now you know just how much, and your insurance even with premiums, should slow the drip, drip of depleting assets. The bonus is, you can make medical decisions based on what is best for you, not for your wallet. I bet you sleep better tonight!

    *susan*

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  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2014

    I was going to suggest a supplement. I get Medicaid since I am only on SSD. I do have an eBay store, and that helps to pay my bills and still keeps me well under the $$ max.

    I am in my 13th year at Stage 4 and just started a second remission....second time was recurrence.

    Guess I will be on Faslodex forever. Guess the fact that my butt is bigger just might be because I eat too much....

    Also on Herceptin again. Kadcyla gave me remission.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2014

    I pay $10 for Faslodex, Xgeva and doctor's visits. I'm a retired public schoolteacher who is not old enough to get Medicare, so I have the same health plan that was free when I was working. Today I only pay $290/month because the Union subsidizes part of my premium.

    I guess I'm lucky or working for the state for 27 years is paying off.

    May all our financial woes get better this coming year. The high cost of medicine should be the LEAST of our worries!!!

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  • carpe_diem
    carpe_diem Member Posts: 1,256
    edited December 2014

    Valerie,

    When you say that you have disability, is that Social Security Disability? If so, you will qualify for Medicare two years after you started on SSD. I'm glad to hear that you have your insurance problem worked out for now, but that may help down the line.

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  • cling
    cling Member Posts: 333
    edited December 2014

    Valerie, so glad your insurance problem is timely resolved! 

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  • Megc
    Megc Member Posts: 21
    edited January 2015

    Happy New Year to all. Am very impressed with the knowledge base here and the help you could give Valerie. Would like to throw out a question: has anyone here tried the Ketogenic diet.....low carb, high fat, medium protein. Because of my many allergies, most meds have to be made for me. I'm allergic to the inactive ingredients, not the medication. The more expensive the meds, the less the chance we can get our hands on the raw medication so they can make it for me. Therefore, I need to look way outside the box. The diet is a new in the last week concept.

    North Carloina is crawling with flu. I have my next set of shots on 1/2/15 so I have been hiding and surfing the web and thus the Ketogenic diet question.

    Mary


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  • pajim
    pajim Member Posts: 2,785
    edited January 2015

    I'm headed down to NC on Sunday to hospital-sit my Mom.  I'd like to stay away from the flu.

    Happy New Year to everyone!

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  • Valerie5746
    Valerie5746 Member Posts: 111
    edited January 2015

    Hi everyone and happy new year!

    Oh my goodness ( I swear a lot so that's the best I can do!) I have never been so relieved. I have a great insurance guy I TOTALLY forgot about.....thank you again for reminding me...I just could not think! I got the infamous butt shot again yesterday and no matter how much it hurts my butt I know it's also saving it! Gone down 700 and something points thus far and hoping to have a date with NED someday. Have a wonderful New Year may it bring us permanent remissions!

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  • Valerie5746
    Valerie5746 Member Posts: 111
    edited January 2015

    Oh and I was just looking at other posts and noting steel rose that you were looking for this on both anastrozole and faslodex. I am on a similar drug letrazole and faslodex and started both at the same time. So far, so great. No side effects and tumbling tumor markers. I don't know why one doc does one thing and one another but I have a platonic crush on my onc so I tend to share his decisions. I think I will ask him why both when I see him but chances are I will forget. Hey, do we all have the worst memories ever or is it just me. I forget. Tee hee. Much love.

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  • bethu77
    bethu77 Member Posts: 320
    edited January 2015

    I saw a post from I believe steelrose about taking Faslodex for skin mets. How many of you are taking it got these? My mets first appeared December 2013. 2014 was a nightmare with radiation burning off the top layer of my skin on my chest and belly. After all this, the mets came back. I was on Navelbine and now Gemzar. I need som advice from those who have been there. Thanks for any help you can give me

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  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited January 2015

    I had skin mets across my midriff area. Had radiation and started Faslodex and Halaven (chemo) about the same time. The skin mets were gone by the end of my rads. I also had mets to my peritoneum and GI. My TM's have gone down to normal and the CT of my chest, abdomen and pelvis showed NED. Yay! I have not been diagnosed with bone mets, but will get a bone scan next week just to make sure.

    Before radiation I was on A/A, but it didn't bring down TM's or slow down the abdominal tumors . It did make me really sick and I would go off for a couple weeks. My skin mets were affected by the A/A. When I was not taking it, the skin mets could be be easily seen. When I was on, they disappeared. When I first showed my onc., they had disappeared. The next time I saw him, they were easily seen. He had a biopsy done and I started on rads soon there after. I haven't seen evidence of them since July.

    I hope that helped.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2015

    Today was the day of my butt injections. The left injection hurt tremendously. As soon as nurse started the right one, I fainted. Shot was discontinued and I was kept in the infusion room for observation. My BP was 80/67!!! My labs were perfect. I don't know what happened. I feel better now.

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  • Nancylm
    Nancylm Member Posts: 94
    edited January 2015

    Brenda, glad you are feeling better after that scare. Considering what goes into us for treatment, it's no wonder our bodies rebel once in awhile. I have just developed a vision problem. Vision tremors in one eye that come and goes. I see vision changes listed as a Faslodex side effect. Has anyone had a similar problem? Nanc

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  • pajim
    pajim Member Posts: 2,785
    edited January 2015

    Wow Brenda.  That sounds unpleasant.  I wonder can you lie down next time?

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  • steelrose
    steelrose Member Posts: 3,798
    edited January 2015

    Beth,

    Yes, I had skin mets on my chest starting in 2013, and they began to spread. In Jan. 2014 I had radiation but the mets reappeared in another area soon after. I started Faslodex last fall and the skin mets went away almost immediately. They are no longer visible.

    Are you currently on Faslodex? Skin mets are very stubborn, but will disappear with the right drug. I hope yours will react to something soon... I know how hard it is to deal with the sight of those nasty skin mets!

    Rose.

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  • Valerie5746
    Valerie5746 Member Posts: 111
    edited January 2015

    Hi Ninalee,

    I have the strangest vision thing going on in my left eye. Not a tremor but like a quick silver flash in my left eye that comes and goes in a moment about ten times a day. I did not know vision problems were a Side effect but I can't see going off because of it. Annoying but worth it. I'm gonna go look that up. Thanks for posting!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2015

    Valerie, please make an appointment with an ophthalmologist ASAP. Your description sounds like retinal flashes. Your retina could be torn. Your eyes need to be evaluated by a professional.

    Please, everyone, keep in mind that not every symptom we have related to cancer or is a side effect of our treatments. We are susceptible to the same ailments everyone else on the planet is--including the various infirmities of aging!

    Tina

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  • 208sandy
    208sandy Member Posts: 2,610
    edited January 2015

    Valerie - what Tina said!

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  • carpe_diem
    carpe_diem Member Posts: 1,256
    edited January 2015

    A visit to the eye doctor is in order, but most people of a certain age get flashers (and floaters). Mine showed up about age 60, but they're pretty common from age 50 on. I had mine checked out and they turned out to be "normal aging." But since there is a possibility it's a detached retina, Tina's right, you should have your eyes checked.

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  • terri-c
    terri-c Member Posts: 180
    edited January 2015

    Thirding what Tina said Valerie, don't take the chance, get the eye checked.

    Hi all, its been awhile since I've lurked and had to read 8 or 9 pages to get caught up. Welcome to all those new to the Fanny Pack!

    I still work full time, and I've had family here from November until today, which is why I haven't been lurking much, but I'm planning to lurk more and be more supportive.

    Have had some changes since I last posted - Lupron wasn't working, had to have the ovaries removed, and they found tumors in them. They don't think its progression though, so are not changing my treatment. Have developed neuropathy in my back - I have pain in two of the spinal mets, but now I've got wacky nerve tingling going on, which is uncomfortable and annoying, but not really painful.

    Just had my 7th month of Faslodex this past Monday, and my mets are stable. Would have liked to seen some shrinkage, but I'm happy with not growing.

    Happy New Year to all, may we all be blessed with another year, and thank you all for just being here. It makes living with this much more bearable when you have wonderful people to share your triumphs and tribulations who understand.

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  • RosesToeses
    RosesToeses Member Posts: 721
    edited January 2015

    Hi everyone and welcome to our newbies! Today marks my 11th month on Faslodex, so far so good and my most recent scans show slight regression, so we're kind of over the moon for the moment :)

    But remembering some of the topic on this thread a few months ago, I wanted to mention that on my CT report the radiologist noted "stranding in the subcutaneous fat presumed secondary to subcutaneous injection" Some of you were mentioning that after a while the injection lumps don't seem to go away--I hadn't really noticed that yet, but looks like my radiologist did!

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  • pajim
    pajim Member Posts: 2,785
    edited January 2015

    RosesToeses, my CT scan always says the same as yours. . .  "mild stranding in the subcutaneous fat of the buttocks" (or something).  I laugh.

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  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited January 2015

    I just got a very happy new year gift! Scan of my chest, abdomen and pelvis shows no evidence of disease, NED. I am so happy! The last scan I had showed lots of disease of my stomach, colon and peritoneum. Yay Faslodex! I don't know how long it will last, but I'll take it.

    Still have my right arm bandage for LE (yes, i'm right handed.)

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  • pajim
    pajim Member Posts: 2,785
    edited January 2015

    Whoooooo!

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  • terri-c
    terri-c Member Posts: 180
    edited January 2015

    Thats awesome Danishgirl! Congrats!

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  • RosesToeses
    RosesToeses Member Posts: 721
    edited January 2015

    Agreed, that's terrific, Danishgirl, congratulations!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited January 2015

    Danish, That is wonderful!!!!! Welcome to the land of NED.

    Sadly, I have left that lovely world.

    Last week's scan shows progression. Met with my oncologist this morning to discuss, having known since Sunday about the report. I am still distilling the content of our time together, but the bottom line is this is a progression in the original mets location, with my first bone infiltration. Since these spots can not be biopsied due to location, we are going to continue with the Faslodex for three months and then do another scan. That scan will dictate the next step. As I knew, she stated that my only options from here on out are chemo. She thinks when we pull that trigger is the art of her job. As long as I feel well, and the cancer isn't on a rampage, we agreed that we want to use the Faslodex. She feels that the Faslodex is still controlling the mets. She then cautioned me that this will change. "We might have to start chemo in April, July, certainly it will be before the end of the year." I mentioned the trip I had hoped to do in September and she suggested I do it this Spring instead. So, now I have to create a timeline to complete my current projects to take off for a month.

    Sucks.... next scans in April.

    *susan*

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2015

    Danishgirl, YAY!

    Susan, S--T! (See your email.)

    Tina

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  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited January 2015

    Susan, I'm so sorry. I really don't know what else to say. Gentle hugs, MaryAnne

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  • RosesToeses
    RosesToeses Member Posts: 721
    edited January 2015

    Susan, I'm so sorry, that really stinks! It's good that you at least have some time to plan around the treatment switch, but still, really stinks. Praying you get great results from the chemo, whenever you start, and that it goes easy on the side effects

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