Faslodex Girls Thread
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thanks! Does anyone get little bumps along with the itching? This isn't possibly an allergic reaction is it? Tues will be my third set of shots and I figure if I was going to have an allergic reaction it would have happened already
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Thankyou for all this information on Faslodex girls. I try and log in a few times a week. I have been on Faslodex since February 2013 and have just had 30th shots. Although I haven't had a big weight gain, what I have noticed is that my hips are expanding. The injections are not too bad, except the last one I had gave me a whopping great bruise over a large area of my arse. Not a happy Chappy today as rather tender. Also for about 3-4 days following I am quite tired. Faslodex seems to have worked well for me so I suppose I can put up with a few side affects, if it keeps my disease under control. Has anyone else had bruising and, if so, any suggestions. I do make sure they are warmed beforehand. Will possibly need to make sure Nurse slows down a bit more.
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Rseman, Fitzwins, I get the occasional itching. Not every month. And sometimes there's a rash.
I'm with 208Sandy. Hydrocortisone cream, over the counter, 2-3x/day does the trick.
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Ditto pajim. Any itching is occasional and was much worse when I began treatment. I also learned to ask the nurse to use paper tape because I am apparently allergic to the adhesives in bandaids. I also use over-the-counter cream to calm the itch.
Tina
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I think the combo discussion is very interesting. I started out with the A/A combo, but after six months I was pretty sick and lost about 25 lbs. It also did not work for me. My mets so far only show in my abdomen GI tract. I was hospitalized twice last summer for severe nausea and vomiting. MO switched meds to Faslodex and Halaven (chemo) and continued the aromasin. By October my TM's the had been up to 300 were down to normal and I was gaining weight and feeling pretty good (except for the fatigue and peripheral neuropathy.)
In December I stopped the Halaven, but continued the Faslodex and aromasin. My CA15-3 and CEA had been normal for several months and no more stomach symptoms. In January I had a CT of chest, abdomen and pelvis and a bone scan. Everything showed NED! (The CT scan I had last summer showed thickening of stomach wall and thickening many places along my colon.) In April we noticed that theTM's were still within normal limits but rising. By May they were above normal and I started back on Halaven and will continue with Faslodex and aromasin. Because my breast cancer is lobular, my MO does't think a CT will show anything yet.
Also because it is lobular, it is hard to resolve with surgery or radiation since it does not usually show as a mass but more like a net.
I would be interested in any comments. MaryAnne
PS I found all 25 lbs, darn it!
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MaryAnne, I have no words of wisdom because, well, zero experience with what you have going on. I do have experience with finding those 25 pounds!
Way back when, whilst on the red devil, I got diarrhea. Lost 25 pounds in 5 days. They had to pump me up with fluids for two weeks. Of course it was all water, and over 3 months all the weight came back. I was so sad.
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The only perk I've gotten so far from this dreadful disease has been to see what I looked like at my ideal weight. I lost it over about six months but still looked haggard. You must have felt awful.
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A question for the long-timers:
When I first started Faslodex, I lost a lot of hair. It wouldn't come out by the handful, but every time I combed I'd get a lot. After 6 months that stopped.
Fast forward 18 months, and it's starting again (this week). I already lost about 1/3, I'm not anxious to lose a whole lot more. And it kinda freaks me out.
Ideas? Am I just doomed?
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I have a question. I went to my MO today for another set of shots. These are the last before I go to once a month. A few days ago I broke out in itchy bumps on my arms and legs and the MO said he wasn't sure if it was a virus or from the shots. I know it has to be from the shots. I tried using Sarna lotion but that didn't work.
Has anyone who has had this experience taken benedryl? Does that work? This is very irritating.
Thanks,
Renee
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Renee, I haven't had that particular experience, only hives and itching at the injection sites, but I would suggest you take Claritin or a generic for several days and see if the reaction calms down. Claritin is an effective antihistamine that won't make you drowsy.
I would use an over-the-counter antihistamine lotion as well. (I'm thinking Sarna is just for dry skin.)
Tina
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Renee, I had my second set of shots last Thursday. Night before last I woke up itching all over. I had hives on my arms, legs, and sides. I took Zyrtec and it almost immediately worked. I do think it is the Faslodex. Susan
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About a third of my hair came out after I started Faslodex and Halaven last summer. Then it started growing again. I think it was the Halaven. Don't know if any of those hair restoration products work.
the Faslodex that I've been on since last June had never bothered me until the last injections. My hips have been itchy and painful ever since. Ready for my next shots on Monday. I think I remember someone saying to take Claritin before the injections. I'm glad you all reminded me.
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Hi all, I'm having my third set of injections on Tues. This is my second time on Faslodex. First time around it was px together with aromasin, following initial diagnosis; and discontinued after three months, due to progression. So this time I'm having it in conjunction with femara, onc thinks that chemo (taxol) may have killed my oestrogen receptive cells ... Anybody ever hear of that? I hope it works this time but I'm v. apprehensive. As I'm sure you all know this limbo time of wondering what will or won't work and waiting for scans is v stressful. I believe you have to wait three months to see if faslodex is effective
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Thanks Susan, I tried the Zyrtec and it didn't work for me. My MO wants me to see a dermatologist. More doctors, more medicine.
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Rseman, that's what I call too many encounters with the "medical establishment". I try to keep those at a minimum. I hope they can figure out whats wrong and how to fix it.
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Hi Ladies, my CT was June 8. It showed lots of progression and also a blood clot. So I've had a busy week. Seen a clot specialist as this clot was very close to my heart. Taking daily injections of Fragmen.
Started back on Chemo yesterday. Taxol weekly.
So I'm going to be posting on that page now.
Good luck to all you FannyPac gals!
Cathy
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Pajim- i like that! Well I decided to say "f" the medical establishment for now and canceled the dermatologist appointment!!! haha that feels better
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Cathy,
So sorry to learn about the progression and clot. That's adding insult to injury! I hope your clot vanishes soon and that Taxol knocks those mets silly in short order.
Tina
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Thank You TinaCathy
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since taking fadlodex for over a year now I have packed on 25 pounds. Anyone use advocare for help with weight issues??
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Just wondering if anyone is taking Arimidex along with Faslodex? About 8 yrs ago when I was finished with Tx following dx 1 my oncologist prescribed Arimidex. All was just fine for about 8 months then severe wrist/hand pain with flexion etc. Occupational therapy helped but it was really a stinker until I changed to another AI. Any thoughts re this? What did you find helpful? Since my onc feels that the combo Faslodex/ Arimidex will give me better mileage overall, I would like to try again. Fool huh? Thanks for your input. Peggy.0
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I understand...my oncologist has ordered Arimidex to be taken with the Faslodex. My CA27/29 has been pretty steady at mid fifties for the past two yrs on Faslodex so maybe he wants to up the mileage that I am getting with the Faslodex....or maybe he is thinking the Faslodex is not as effective as it should be. Thoughts? What is time Length of effectiveness for most on Faslodex? Thanks for your input. Peggy
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Funny thing though with the "bruising". My last CT scan (on report) noted ..."edematous area possibly associated with injury both gluteal areas". I'll say! :-). Peggy0
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Peggy, I am not on Arimidex but am on an AI/Faslodex combo (with Aromasin). There was a study showing a benefit to using a combo. I believe the study used Arimidex. I am personally on it as a result of that study and because my estrogen levels were really high so my onc wanted to use both - Aromasin to block estrogen conversion and Faslodex to handle estrogen in my cells. As for joint pain, my onc just prescribed me Cymbalta for that. I am still deciding whether to take it but it is good to know there is something besides pain killers that helps.
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Momonana6, I take an AI with Faslodex, but it' Femara, not Arimidex. Same idea. As for effectiveness, it varies tremendously from person to person, and also whether it is first-line or second line therapy.
The median time to progression for first-line therapy is either 12 or 14 months, depending on which study you believe. The median time to progression for second-line therapy (i.e. an AI already failed) is 4-8 months, once again depending on the study. If anyone wants the actual references, just PM me. I won't bug you all with the abstracts here.
What I've learned reading all the material is that responders do well. If you are in the 50% who make it past the median time you have a 50% chance of taking the drug for a long time.
[Median = 50% of women have reached the endpoint. In reference to above, if 100 women are on AI/Fas, the 50 women will have progression within 14 months. The 50th woman will be found to have progression 14 months after starting the drug]
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Pajim....Thanks for the information....it does seem like my response has been favourable but it is time to maybe kick the TMs closer to the 40 mark. So glad that the Herceptin x 2 yrs is agreeable to my heart......a really good drug. I. Hope that all is going well with you and that your summer will be great. Peggy0
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Momonana6,
My CA27.29 has been holding in the 60s for the last four+ years. I have been on Faslodex the entire time. Onc says that he isn't concerned about TM being out of range at this time, only if it jumps higher. At my next appt. I will ask about adding another drug to increase the effectiveness.Note: he may not be concerned, but I surely am.
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The absolute tumor marker number is pretty irrelevant. Each of us has a number that indicates the cancer isn't being successful in its goal of reproducing. For me, that number is around 66. So, try not to worry about what your number is, just what your number today is vs. your numbers over the past 6 months to a year.
*susan*
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Thanks, Susan. That is reassuring!
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I keep reading about so many people taking Falsodex with another drug but my MO has put me just on the Falsodex. I get Lupron shots to induce menopause. This is my second line of treatment because the AI stopped working. Can anyone direct me to any literature on taking it alone as a second line of treatment?
It's making me nervous that it seems that most people get a combo.
Thanks
Renee
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