Faslodex Girls Thread
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I've had the same experience as pajim. When I met the nurse for the first set of shots she said, "Oh good! you've got plenty of padding." Never thought I'd be glad to have a big rear end. I've only had three sets of shots, but they were all fairly far up and to the outside, with the needle angled down. She's really careful about pre-warming and giving it slowly, and it's been easy so far. I'd sure like to know that it's working, but my next scan is in April.
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Hi Myra,
I am so sorry you are going through this terrible anxiety and fear. Couple things I have heard from my most famous onc. 1. It's more important how you feel physically than tumour markers
2. If Faslodex does not work there are five other families with hormone reduction as treatment and three subsets of THOSE families..that's fifteen.
3. Your mood will get markedly better....mine has,
4 . It took me two months to decline and now I have declined 700 points
5. I'm taking pain pills to relieve pain, sleep when I have to, keeping myself first and living in the moment.
I can't get out of it, gonna get into it.Don't wanna be a victim all the time but it's ok if I feel that way and cry my eyes out and the rest I'm asking lots of questions and I'm gonna live every moment I have and then move on with few regrets. Mostly telling people how much I totally love them. That's all. don't need to see Venice but Ngland, Scotland would be cool and Aruba. Hopefully u feel some love from us....u don't have to go through this alone.....please keep writing. It will get better ❤️ there is a ton of gooooooood treatment out there!!!
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thank you Valerie for so much love.
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Ur welcome Myra. I live near Boston, if there is anything we can do please PM me. Much love
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I am so thankful to find this thread. The tips and insights are invaluable. I was diagnosed with IDC in late 2008. My 2.5 cm tumor would have required neoadjuvant treatment to shrink it prior to having a lumpectomy. Considering that and post surgery radiation, I opted to have a mastectomy, no reconstruction. Stage IIb with not lymph node involvement so I went on Tamoxifen for 5 years. I tried Arimidex but couldn't tolerate the constant joint pain and flu-like symptoms. My Oncotype showed low risk of recurrence, so my Dr. and I felt Tamoxifen was o.k. I opted to have a prophylactic mastectomy on the other side in 2012 just to ease my mind and to even things out. I realize many people don't feel this way, but I have really enjoyed my freedom from breasts. I finished the 5 year course of Tamoxifen and things were going well so I stopped taking it and moved to annual visits. Unfortunately, I recently developed lots of gastrointestinal problems followed by severe upper abdominal pain. PET/CT revealed "innumerable" lesions on my liver and biopsy confirmed that it was a breast cancer recurrence. Tumor markers were at 635. The severe pain improved significantly over the next couple of weeks. It was quite a shock after clear sailing for over 5 years.
So, I had my first Faslodex injections on Jan 12th and get the second injections tomorrow. I have plenty of hip padding and had a great nurse give the injections. No pain, just stinging. That night I had really bad chills and had bad joint pain that night the next few days. It slowly resolved andI haven't experienced any other symptoms except extreme fatigue and some occasional nausea. I'm not really sure they are from the cancer or side effects from the Faslodex. I am fortunate that I was able to quit work right away so that has helped with the fatigue a lot.
Thank you all for sharing and my best wishes to each of you. I look forward to staying in touch with all of you for a long time.
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Welcome Sarah! So sorry you have to join the club.
I had a couple of side effects the first few times that have since gone away. With luck your nausea is one of those, or that it's caused by the liver mets which will soon start to shrink.
Bottoms up!
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Welcome Sarah!
I certainly hope that Faslodex is a great drug for you. Both Pam and I continue to work full-time on Faslodex.... I really hope that, assuming it works for you, that within 6 months you will be feeling a bit more energetic so you can enjoy your non-working time.
*susan*
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Hi ladies....A funny result on one of my CT scans to lower abd/pelvic area.....rad/ onc noted. "Areas of contusion gluteal areas bilaterally". My injections since Jan 2014....after a rise first 2 months...CA27/29 it settled down to the 50s. Hope that all you in the north east stuck in blizzard central are escaping "cabin fever". Hugs, Pegg
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Valerie, I love your "can do" attitude approach. It is catching! After a month of moping around a year ago...tx was and is...Herceptin and Faslodex, I rejoined friends, family and readjusted my calendar to put them first and txs, scans etc to follow. It's working...one friend remarked.."you look much better". "Do you mind if we take you off our prayer lists". That was my scan result for the day! Best of health to you also Valerie. Hugs, Peg
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Momonana6,
I read "Areas of contusion" as "areas of confusion!"
(I'm going with my version for maximum laughs.)
Tina
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Tina 2...... Your read is so funny....you get copyright! Hope all is well with you and NEP. Take care. Pegg
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love u guys...so funny!!
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It's official: I'm a hard ass--literally.
For the first time, my nurse couldn't get the injection into my left buttock. The needle went in, but the drug would not flow because of "something it hit." We suppose it was scar tissue. She withdrew the needle, saw there was no flow impediment, changed needles and injected me again, this time successfully. The other injection was uneventful, but both hurt more than usual.
Additionally, it turns out that I am now the practice's poster girl for Fasodex in terms of how long I've been on it. I feel a weird combination of grateful and apprehensive.
On the way home now. I was in the office far longer than usual today. Sore, wiped out, slightly queasy and hungry!
Tina
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Tina,
What happens when you run out of space on your bottom?
I have a small butt, and it is not fatty. I am hoping that the shots will make my butt bigger and fattier.
Hugs,
Brenda
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Tina,
Yoweee!!!! Your nurse needs to add the rub-the-spot to her routine. All my nurses have done this so that they can feel the "contour" of the scarring/hardening user the skin. They then decide where this will all happen. Then they do the sterilization so I know where it will be [well, they don't do that for my benefit specifically], and then the prick.
Hope you were able to take a nap after you got home and that there is no residual discomfort.
*susan*
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Susan, yep. I took a cue from you and just arose from a short nap. Back hurts. Dreamed that Faslodex was making me sick. Dreamed the sun was out, too, but no such luck: it's sleeting.
My nurse does check the site, according to my spouse, who apparently watches until the needle goes in. She swabs it, sprays a numbing spray, then spreads her hand against the area (I think this is how everyone delivers an IM injection), then runs one finger along/across the contours of the area to determine the most appropriate spot. However, I will mention it next time. The hardened areas at the upper outer quadrants of my buttocks seem pretty large to me, so my guess is that she has to choose the least tough-seeming.
Brenda, would that I could send you some of my fat. I assure you I have plenty to spare. I told the doctor today that I was continuing to gain weight and had little energy. He suggested I join a gym. Oh how very unlikely this is to occur!
Tina (aka H.A.)
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I unfortunately have never had the same nurse twice. I do have them massage the spot for a minute or two after the shot. I have pain in the shot area for several weeks later
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Tina2,
I'm fairly new to Faslodex and really appreciate all the tips for dealing with shots. It's also encouraging to hear from women who've been on it for years. I was on anastrozole for 45 months and was upset when I finally had to move on, but It's good to hear from so many that Faslodex has worked for.
I know exercising when you're so fatigued is counterintuitive, but there's a lot of research out there that shows it can be really energizing. I was lucky enough to find an exercise class for cancer patients right after dx, and in addition to helping with energy levels, it was also the best support group you could find. I still keep in touch even though I moved from Texas to New York. I relied on walking, hiking, and exercising with my DH for the first year I was here and that works fine except when winter really sets in, so we recently joined the local Y and found that water aerobics in a warm pool is a whole lot more appealing than snowy walks at 20 degF! You might see if there is anything around specifically for cancer patients or try a program like the Y that provides a personal trainer to get you integrated into the swing of things.
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Thanks momanana6 ,
I had great energy therapy today which deals with psychological blocks to healing...old childhood traumas, bad messages about the self. Old stuck garbage. Feels good to air that stuff. I can't fake it. If it's effed up and it's in me ,it's gonna eff me up. Feels good! Also had a free foot massage at rAdiaton clinic today. Felt great but I have that weird smell after Faslodex shot. I know we've all talked about that. I feel like I smell like mushrooms for three out of four weeks a month!
Could be worse. Be well. Much love. 💖
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I have no odor from Faslodex.... this is not universal at all. Nor is overwhelming fatigue. None of the possible side effects will be experienced by everyone. Of all the cancer drugs I have been given, this continues to be the easiest. :: knocks on wood ::
*susan*
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Thanks, carpe diem. I agree with you that exercise can be energizing, so I am going to push through my fatigue and blahs.
I can't afford a fitness center around here, but am researching the nearest Y. The website isn't detailed and it doesn't look too promising on Yelp, but I will drop in and check it out for myself. I tried to do a community center gym a couple of years ago, hired a trainer to introduce me to the equipment, etc., but I quickly became disengaged, partly because of arthritis issues and partly because I just couldn't get gym-oriented. Most of the equipment was old/difficult for me to adjust to my height and competence, so I would just end up getting on a stationary bike and just peddling for 30-minutes. This would have been okay if it hadn't cost an initiation fee and a rather hefty annual fee. The final straw was the older gentlemen who would insist on setting the TVs to the most conservative news channel and turn them to their highest volume. When it's not too cold, I walk regularly in my neighborhood. It can get boring, but it's free.
And I don't have to get into a bathing suit!
Tina
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OMG Valerie where did you find this energy therapy? That is so right up my alley! I too have an odd odor from fasolodex. I ask my husband if he smells it and says no. It can last almost two weeks. I taught spinning and was a total gym rat prior to this bone mets dx. It was the best part of my day. Have not been exercising at all. Think that could have something to do with my bad attitude.
I have always found when exercising find some great music, throw in those earbuds and just pedal away. Made me smile and sing all the time.........
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A bit of good news to share. After 6 treatments on faslodex I reached partial remission and my tumor marker is 23. There are many success stories on Faslodex, so good luck to those just starting this treatment. Nanc
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Good news, indeed, ninalee!
Tina
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Congrats Ninalee! My daughters name is Nina. Your news made me smile!
My husband can't smell the Faslodex smell either... I used ask like fifty times a day. I'd say " it smells like mushrooms! Loam! You don't smell it?????" I was sure he was trying to make me feel better but NOONE can smell it so I didn't wanna look too crazy but I knew I wouldn't here.
Myra, I can help you with that. It's great stuff but of course intense but it's great its very freeing I just need to know where you live. U can pm me or just tell me.
Have a safe and happy weekend! Much love!
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I live in Ft. Lauderdale, FL
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Nina, wonderful news indeed!
valerie, But, let's not talk about asparagus! :-)
*susan*
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Great news, Nina!
I followed the advice of someone from here and asked to lie down during injections. Nurse acquiesced and took me to the examination room and had me lie face down. She injected much more slowly. So this time I did not faint. It was not so bad at all. I could keep doing this if it is working!
Tina, do you have arthritis? Is it RA? I am finding, in my research, that MBC patients with an auto-immune disorder are more likely to show NED. I think it's about the immune system just wanting to attack anything and ending up attacking the cancer cells!
Have a good weekend, everyone!
Brenda
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Hi everyone~!I'm new here to Faslodex and will receive my first injection this Monday.I was diagnosed with Stage 4 BC with bone mets and lungs in November, 2012. I've had progression after taking Femara for 15 months, then on to Afinitor/Aromison until now. Actually I had to stop the Afinitor after taking it for six months (nasty side effects) but continued on with Aromison (ph). I had 10 months of Aromisin. So, here I am, getting ready to start Faslodex. Any encouraging words would be appreciated. Tips and suggestions would be good as well.
Thanks
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Ninalee, that's wonderful, congratulations!
And Brenda, so glad that worked better for you, goodness knows you don't need a monthly fainting session, yikes!
Naturegirl2, welcome! I've been on Faslodex for 12 months now and so far stable with some small healing areas so that's all good, wishing you the same. For me they hurt a lot on and off for about a week for the first few months and some months I have some tiredness a few days after and some emotionalness for a couple of days, but for the most part it's just hot flashes and stabiliy, hope it's just as good for you.
Also, the smell, I've never noticed that at all. I wonder if, especially because it's only the patient that smells it, if it's related to how your sense of smell gets sharper when you're pregnant? Maybe something about how it works on estrogen receptors?
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