Faslodex Girls Thread
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And congrats to you, Pam, on the NEMAC declaration!
Tina
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I was 100% ER /95% prog positive, HERZ 2 (-) like Linda at age 47 had chemo induced menopause. I requested arimidex which I was on for 2 yrs, switched to tamoxifen which only lasted 9 months. I was misdx in 2008, my cancer wasn't seen on mammogram, so 6 months later my cancer went from pea size to grape & I had 2 types by then w/mets to bones. I was devastated & thought I would be dead in year or 2, but still here, started faslodex in June, would of started sooner but was waiting to get in Palbo clinical trial w/X-geva. So research shows after a year u can decrease X-geva to every other month. So I am happy to report my tumor marker is down 20 points, scans show no progression of disease. I do my own injections in my thighs, over 4 min. I am sore about one day, very tolerable. My biggest change is the hot flashes, I sweat profusely, my hair gets so wet my little one I watch ask if I had a shower.i sleep w/ 2 fans & only use bed sheet. I change clothes at least 2 times a day. Wow, a lot written, hope it helps some one. Sue
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Sue, wow, you do your own injections?! Why?
And does your insurance cover it to a decent degree?
Tina
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Question for the Fanny Pack: Has anyone else developed a dry, itchy scalp?
It started about two months ago, when I noticed a light snowfall as I blow dried my hair. My hairdresser suggested applications of olive oil before shampooing, which I dutifully tried. I've also tried the usual over-the-counter special shampoos, but it's getting steadily worse.
I might ask my onc about it tomorrow at my regular appointment, but I know he'll reject this as a possible SE of Faslodex. It's become clear over the years that he believes any SEs from Faslodex are relatively minor or don't exist.
I'll go to a dermatologist if I must, but my fear is that the minute I reveal I am in treatment for metastatic BC with a mysterious anti-hormonal treatment he/she has never heard of, he/she will conclude, "Oh, that's it" and virtually dismiss looking for another cause, bumping me back to my oncologist, whose reaction will be as above. This very thing has happened recently within the past year with an orthopedic surgeon, a neurologist and an endodontist.
(My unspoken worry, of course, is that this scenario may be a precursor to losing my hair. Although that would be an extremely rare effect of Faslodex, I have read on these boards that apparently it can happen.)
Tina
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Tina,
Any bumps or scaly bits on your head, or just general itches? Silly, long story, but it turns out that the "rash" on my back is actually a fungal infection. She asked if my head was also itchy which ties into your experience. Otherwise, once again, I am absolutely no help.
*susan*
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Susan, no lumps or bumps, just general itches, the strongest of which are near the nape of my neck. I have not used any new hair products, cologne, shower gel or laundry soap.
( Eeew! Who needs a fungus among us? Not we! Will the insults to injuries never cease? What is the remedy for yours?)
Tina
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Tina,
I have to apply a rx cream twice a day. Husband says that the bumps are receding, but the incredible itchiness still remains. And while YOU haven't changed your products, it is possible that the products have changed. This is the type of thing that I find infuriating to get anyone to diagnose. I had three medical professionals blow me off before my primary's NP landed on this idea.
I find the whole thing annoying and uncomfortable. I am sure you feel similarly.
*susan*
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Susan,
You bet. I just squirted a hydrocortisone solution on my head and obtained blessed relief for at least 10 minutes.
Off to our insurance agent to evaluate this year's Medicare supplement plans. Aetna made several $2,000K+ mistakes in the renewal papers they sent two weeks ago and just sent errata sheets to let us know. Holy Unreliability, Batman!
I just went through the new Forumulary checking my "covered" meds. Heaven help us all not in paid-for clinical trials if the powers-that-be decide Faslodex can be self-administered at home. Susan2009 recently mentioned here that she is doing just that, injecting herself in the thigh at home.
Tina
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Hi: I've been monitoring this thread for a long time because I was told I'd be on Faslodex but so far I am not - anyway the fungus on the scalp showed up when I was on the AA combo a few months ago - my PCP who is an angel and a damned good doctor - told me to try Selsun and then start using J&J no more tears and it works!!! I used the Selsun two times in a row the first week and then continued to use the baby shampoo for the next 8 weeks with no problems - the dandruff showed up again last week so I went back to the Selsun and am now maintaining with the baby shampoo - don't use cream rinse or conditioner as they can add to the problems - if it continues to be a problem then I guess a dermatologist is the next step......hope this helps.
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Sandy, thanks! I've been using Selsun, alternating every few days with my regular shampoo and conditioner. I'll try stopping the conditioner (which means my hair will look like a haystack, but that's not inappropriate for this time of year) and try baby shampoo.
Tina
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Tina - I use a (very) wide tooth comb and let my hair dry naturally when I can so the dryer doesn't make the haystack effect - PCP explained that the baby shampoo is used for "cradle cap" which is also fungal and my hairdresser says she uses it once a week because it balances the skin on the scalp - she also washes her face with it once a week and she has the most beautiful skin.
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I will continue to be in the fanny pack! Had CT/bone scan last week and onc appointment this morning. Last couple days was hell, all kind of thoughts run through my mind. Since MD Anderson confirmed my mets in June, I was told to go back to Faslodex, not to look at tumor marker for at least 3 months, then see if Faslodex works (earlier in the year, local onc pulled me off Faslodex after 3 shots). This time, TM finally started coming down and CT/Bone scan are "stable". I happily went to get my shots in the treatment room. Tomorrow I will get my massage to sooth the injection sites.
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Good news, cling. May Faslodex be your friend for a good, long time.
As for me, at my monthly appointment today I described my dry itchy scalp problem to my oncologist. He immediately said that it could be an effect of estrogen deprivation from the treatment and suggested I see a dermatologist. So that's the secret: not to venture my own thoughts on a possible cause, but to let him come up with it. Wow, am I a slow learner!
Tina
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Wilsie, I'm so sorry the Faslodex is no longer working for you , but Taxol is good too and may be your perfect med! How is your son doing? Hoping and praying his scan is negative.
I had a HIDA scan on Friday for my gallbladder. I have not read the report, but was told that it was filling and emptying okay. From what the tech said, it sounded like it was a little sluggish. I really have no idea what that means in terms of cancer. I've been to the ED twice with nausea and vomiting. I was not in pain but have never felt that really sick before.
pajim, I'm so happy for your great scan results! Yea Faslodex for keeping us going even a little longer, hopefully a lot longer, then on to whatever is next!
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http://www.medicalnewstoday.com/articles/262039.ph...
Does anyone know about this treatment? Nan
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Hello everyone,
May I join?
I been reading your posts to try to get ready for the Faslodex shots, thank you for sharing. I'm scared but hoping for the best.
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Hi Nan, there's an entire thread devoted to that treatment. Dr. Wardell, one of the authors of the abstract, was posting and answering questions. It think it's called "Did anyone see this?". As I remember they haven't tested it in humans yet though it is an approved drug in Europe (not for cancer).
kaydeesmiles, welcome to the Fanny Pack! best of luck to you. I find this very easy to take (says my hip which is major-league bruised this month). Let us know how it is going.
Cling, nice job! Glad to hear things are going well.
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Thanks Pajim, It sounds promising. Now that you mentioned it I do remember the earlier posts. I read that your scans are great. That's wonderful. My scan results showed stable on Faslodex after 12 weeks.
Kadeesmiles, Welcome. I hope the very best results for you. I find the SE's much easier to handle than Arimidex. Nan
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@Nan: I was interested in that drug as well. It seems that it may be marketed eventually in the US but only for osteoporosis and combined with estrogen which of course makes it not so useful to us.
@everyone: Not whining but looking for advice: I have been in the fanny pack for 8 months (9 x 2 injections so far). Last month, for the first time I got a reaction and hard lump which although smaller now has not gone away and for some reason is actually hurting again today like it did at first. Any advice? Do these lumps go away over time or do they last forever? All info and advice welcome! Janet
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Hi 20130502,
I get the lumps most months, but they do go away- not always in time for the next injection, though.
Mine usually don't hurt, but do sometimes. Taking Benadryl after the shots for the entire day and that night does seem to help me with any reactions I might have.
Had my injections today- lumps from last time were small, but still there. No pain, though. My nurse was training another nurse, so I got to be a subject for discussion.
My regular nurse is a pro, so I'm glad she's the one training people.This drug has been so good to me. I am grateful for every day that I can take it. I hope you have the same experience and hope it kicks your cancer to the curb for a long time!
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I'll be joining the Fanny Pack sometime next week. I hope I get good results. 😊 Thanks for all the tips and tricks.0 -
@20130502 there was a month where I got lumps. Maybe two months. They were really hard decent sized, and didn't go away even with massaging. They did eventually fade, maybe 6 weeks later. Haven't had them since. I don't recall that they hurt. I remember saying something to the nurse the next month and she made sure to avoid the area.
@fujimama, welcome to the group! I don't think I'm speaking out of turn by saying that we all [also] hope you get great results!
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I have had a rash on my face after each shot (spots and lumps). Hate them. Anyone else have a rash. I also don't feel well after the shot. I don't know what else to take that will do the trick without side effects.
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My doctor called tonight to say he had good news and that my scan looks much better. He added that when we talk this Monday we will decide whether to continue chemo or change to Faslodex.
I may be in this club soon!!!
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Hello from Canberra Australia. I have been on Faslodex just over 12 months now and seems to be working. Initially diagnosed early 2005 with left masectomy, chemo (FEC x 4 then Taxol x2) then radiation. Was all well and good until put onto Tamoxafin which I hated due to side affects. Stopped Tamoxafin however at same time had pain down my right side. Took them about six months to diagnose the cancer had gone to my L5 plus a few other areas - bugga. However recent CT and bone scans are positive. I am also taking Aromasin and injection Xgeva.
I often have a Nurse either side of me doing the injection same time. They now hand me the Faslodex when I arrive so I can warm them for at least 15-20 minutes which I feel really helps. I have had the lumps a few times but these are usually gone after a week.
Just wondering if anyone is taking anything else. For example I take Vitamin B complex after reading a very old Pathology text book where they did studies on two groups of mice both on very poor diets. One group they gave Vit B complex and this group did not get any liver tumours whereas the other group did. I also take Curcuram (Turmerick), Milk Thistle, Barley and Wheat Grass tablets. I rattle after breakfast!
Fingers crossed Faslodex will remain my friend.
Mary-lou
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Hello, Mary-lou! Welcome to the Fanny Pack, a cheeky bunch indeed.
I take a multivitamin (have since time began), calcium with D (on the advice of my onc), Vitamin C (because I feel the need), Vitamin B complex (because several people said it might help with neuropathy) and Iron (because my red blood cell count was way down for a while after hip surgery.) I'm probably throwing my money away on some of these supplements, but it makes me feel like I'm doing something.
Tina
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Hi Mloo -
I'm in here getting all the tips I can ahead of my first shots tomorrow. My short term memory hasn't been the best since chemo but I'm going to set a phone reminder to remind myself to warm the meds.
I'm taking Turmeric too and and going to up the B12.
Best of luck to you and many thanks to everyone here for welcoming and sharing your experiences.
Kay
Edit: Anyone here on Faslodex and an oral AI at the same time?
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Hi Kay, yes, I take Femara along with my Faslodex. Have been for the entire time.
I don't take anything else even though I probably should. Only things I take on a regular basis are wine and chocolate :-) (in small doses).
Welcome Kay, welcome Mary-lou.
Hindsfeet, I've had rashes on my rear, but never on my face. A little topical hydrocortisone took care of them. After a couple of months it stopped happening. My guessing my body got used to this stuff.
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well I joined the Fanny Pack yesterday. I warmed them my nurse took her time getting it in and I went for a wogg( walk jog) later. Still a might sore. Mainly I just want to slee. Normal?0 -
I have a question for Fanny Pack sisters who also take Xegeva. One of the SE I read on Xegeva is "low calcium levels may cause tingling around the mouth, in the fingertips and feet, numbness, and painful muscle spasms." My calcium level is not low, but I have some tingling on my right arm and fingers (the shot arm) after I started Xegeva shots. Do any of you have these problems?
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