Faslodex Girls
Comments
-
I started on faslodex at the end of March and my lung mets stabilized as well. Only one scan under my belt since I started, but so far so good.
Anyone else gaining weight on faslodex? I am biking and swimming daily and still gaining, sigh.
-
Eva,
I am loosing weight now that we have dropped the aromasin. It actually makes me a bit nervous since I worry that there is more estrogen being released and used by my body. But fitting into some of my old sun dresses again is fun.
*susan*
-
I've just started on Faslodex. My nurse was very good and I really didn't feel the injections. However, the injection site developed a hard egg shaped like area on both sites and is slightly sore. I am supposing that this is normal. I just hope it works for me.
X Sarah -
Thanks to you all for your input/experience. I'll let you know what happens down the road.
-
I haven't gained weight, but I haven't lose any either. My existing fat seems to be redistributed, settling into an unlovely spare tire around my midsection.
-
Hi, Faslodex femmes,
I'm excerpting and revising a portion of yesterday's update post on my"Paging Dr. Freud" thread because it concerns my Faslodex injection of yesterday:
Unusually one of my Faslodex injections hurt like crazy going in and afterward, to the point where I squirmed and dropped a few choice epithets, probably scandalizing the nurse. It felt like a very angry, robin-sized hornet had settled in for a nice, long 15-minute sting. Yeowch! The nurse is very experienced and could not figure out what happened, saying the pain I described was not like she'd hit a nerve. Remembering something I'd read here in this thread, I asked her if she had any lidocanine or the like, so she spritzed the area with a cooling topical anesthetic which helped a lot. It's the next morning now and the area is an angry mottled red, with raised itchy patches, bruised and extremely tender to the touch. My partner and I theorize that perhaps the nurse started pushing in the contents of the syringe before the needle was fully into the muscle.
I've had a bad reaction to these injections only once before, early in my treatment with Faslodex. It occured an hour or so after a young woman who I assume was improperly trained shot the stuff into me quickly when it was not warmed up. She thought the faster, the better and I felt like I'd been shot in the rearend. I don't let her near me anymore except to check my vitals.
After a full year on this stuff, I am convinced: in regard to the administration of Faslodex, technique is everything.
-
Ouch Tina sounds like she hit a nerve. I have only gotten two doses so I am definitely not an expert, maybe try a warm compress or a long walk to get the medicine to disburse. How are you doing on faslodex? I threw up and felt really tired after my last shots, it did not happen the first time? I would love to hear about the success you are having with it since you have been on it for a year!
-
@Other Tina (one of many on this forum),
The nurse said nerve pain would have traveled down my leg and this pain was completely concentrated in my butt. She has also insisted over the year that warm compresses are a no-no for the first several days after the injection as they encourage the Faslodex to be absorbed too quickly. Cold is okay.
Overall, Faslodex appears to be keeping my lung mets stable, so I feel ungrateful to complain about what are probably minimal side effects compared to those that occur with other treatments. I've had some intermittent nausea with the injections, hot flashes and itchiness and bruising at the injection sites, and also fatigue-- but all these have been sporadic and completely unpredictable.
Good luck with your treatment!
-
Thanks for the heads up on the warm compresses, I guess I though it would be like a vaccine when it knots up under the skin with my kids so thanks for the info. Is stable considered remission or is NED considered remission ( I am still a newbie). Thanks
-
@Tina the Younger ( I assume), many people on this forum would disagree about the warm vs cold after injections, but I'm going to listen to the nurse. I think "stable" is considered partial remission. NED is "no evidence of disease" and I believe is technically "remission." However, various docs probably have various interpretations. Check the definitions on legit online cancer sites.
-
Had my third and last "loading dose" yesterday. So far, so good. Now let's hope it works! I've had little to no negative side effects, so far. Fatigue, following injection; some fleeting nausea and joint/bone pain similar to what I experienced on femara. It's often difficult to distinguish the difference between pain resulting from treatment and that of mets, so not sure, yet. Time will tell. Overall, a small price to pay.
-
Swimming and really focusing on stretching my hips as well as light massage of my hips (with a very experienced therapist) about a week post injection seems to move the Faslodex out of my hips. It seems to get very stuck there and so in my mind I'm moving it to where it most needs to go.
But then again, I'm pear shaped so everything sticks to my hips. Ha.
-
Eva, I've just started gaining weight like crazy after a year on Faslodex. At first it wasn't a problem, but I can't seem to get rid of the tire around my middle, and I used to be so thin.
I'm on vacation now, but when I get back I'm going to try more diet and exercise, but since I already hike and walk quite a bit, I'm not sure what else I can do.
I also have scans when I get back. If I'm still stable, I'll stop complaining.
Tina, my last couple of injections have left me more bruised than before, and I even had one painful one like you described, except that the skin split and bled at the injection site, and still isn't completely healed after four months.!
I'm wondering, since we've been on it so long, if we have built up scar tissue and the injections don't go in like they normally would, or did in the past. I hope we aren't just "full up" with Faslodex.
-
Sandilee, your progressive scarring/"full up"theory is interesting. I asked the nurse later if it was possible she started pushing before the syringe was completely in the muscle and she said no. (To her credit, she did not seem offended.)
Since I know we won't find anything negative about Faslodex on a legit medical site (except the SEs that the manufacturer must acknowledge), I'll ask my nurse what she thinks. I know the practice has had patients who have been on Fasodex for at least several years.
-
I'll be interested in what she says. I don't have a "lot" of muscle in that area, so I can imagine how this might be true. The same nurse has been giving me my shots for quite awhile, which is why I don't think it's the nurse. When my rupture happened, the nurses were very concerned and wanted me to see the head nurse, and then make an appointment with the nurse practicioner. They were worried that it would never heal completely. It's much better now, but not gone. My onc saw it, and said he'd never seen that happen before, either. I now have to have both shots on one side, to avoid the damaged side. I hope it heals and I can go back to both, as the second shot in the same side is the one that seems to bruise the most.
There could be something about my individual biology that I'll never understand. I hope I can stay on it for several years.
-
I think having the same nurse each month is a good thing. Mine tracks where she has given them so that she aims for a different spot each time. My "pockets" seem to reduce less and less these days. My PT this week thought she could "work them out" and boy did I pay a huge price. The pain was just awful. Much worse than the injections.
I have had 30 appointments [I think] which would translate to about 44 injections since I only got one for a while. Two injections have been "blow outs" but I have not had skin splitting. I am the first to admit that I have some booty. Born that way so maybe that helps? I can find no rhyme or reason to why some months I am sore for days, while other months I am only sore for a day.
_sigh_
*susan*
-
Hi Ladies,
Ive posted this question before on the general Stage IV board, but I didn't get a great response. I was wondering whether anyone is experiencing some of the following side effects because of faslodex such as: heartburn, acid reflux, occasional neck pain, fatigue and indigestion (I'm lucky enough to be experiencing all of these)
Ive just received 3 "doses" so far, 2 weeks apart, and I'm becoming really concerned as to whether these are the drugs side effects or whether my liver mets are just getting worse.
Thanks for any insights you may have.
-
Crissie69, I have some nausea here and there but no digestive issues. I have never been prone to them. Have you or are they new? The only condition on your list that I share is fatigue. And my arthritis probably contributes to that as well.
-
Crissie69: I have diarrhea for a few days after injections, and I stink like carbon. But my only big SE is new arthritis in feet, knees, and hips. I suspect faslodex enhances any normal aging issues, such as I am prone to arthritis so by binding to my estrogen, it just enhances our aging process. This is my guess, I have not read it anywhere. But seems to make sense as to why I suddenly hobble everytime I stand just after starting faslodex. My $.02.
-
EvaPerone, anything that depletes/shuts down estrogen is going to affect our joints. My arthritis has definitely worsened since I went on Faslodex. However, I'm also a year older!
-
Welcome to the thread--Syrmom, Crissie69, EvaPerone, Tina72!!
I haven't been around the dissusion forums lately--the hubby and I had a busy summer training and caring for our new Cavaleir King Charles Spaniel. She's a hanfdul! I think we had forgotten how much work a puppy could be. Anyhow, she's on a more regular schedule so, I have time to use the computer.
I just had my 10th round of Faslodex (I get it with Zometa, which is delivered in IV form). I don't always have swelling after the shots but, usually there's a bruise and some tenderness at the injection sites (for afew days). This time, I have a little bit of swelling on my right side. I forgot to relax that leg at the time of the injection so, that might be the reason I have a little swollen spot. For me, the Faslodex side effects have been minor. However, the Zometa gave me flu-like symptoms so, I get and IV drip of Decadron to prevent that.
I think the Faslodex does, at times, give me some stomach troubles--gas, cramping, unpredictable bowel problems. If I stick to startchy foods for a few days (after the shots) I have fewer stomach issues.
From what I understand about being "stable" it means the cancer is inactive--it's not growing or moving to another body part. Unfortunately, the cancer will never go away--there won't be any "no evidence of disease" or remission. I have Stage IV spinal mets and I have some compression fractures but, my worst pain is from slipped vertebrae and an entrapped nerve. I can't do things I'd normally enjoy. A nerve block helped a couple of times but, my pain management doc is going to try Radio Frequency Abalation. I'm hoping and praying that it'll work!!
Talk about working--best of all--Faslodex has been working for me for ten months (it's kept me STABLE)!! I feel blessed. I pray it will work for all of us for a long, long time!!
-
Hi Aerial: My doc said I was NED as I feel no symptoms of the disease and I'm stable as faslodex has kept the mets from growing bigger. So before that I was NED but NOT stable as the mets were growing but still not yet affecting me. I think remission may be a misnomer for MBC. I haven't heard my docs ever use that term.
Two weeks before my next CT scan and already a tad anxious. I wish I could be more laid back but I've only had one stable scan.
-
crissie69 I've only had 3 loading doses so far. The arthritic areas are defin. more painful & increased fatigue. I have noticed more sensitivity in the digestive area, like cramping and gas. I was worried I might be forming liver mets; however, not sure what those symptoms are. No further scans until Dec., but the labs should reveal something one way or another, next month. Good luck.
-
Thank you everyone for your responses. I've just acquired a new side effect from the drug: orange urine. I hope to God it's from the faslodex and not due to liver failure!
-
Thanks for the info, EvaP! I agree that "remission" is not part of the vocabulary for "mets." I'd say it's normal to get nervous before a scan. I've had several scans and they've been stable but, I still have a little anxiety attack before.
Crissie--I haven't had orange urine but it does look more "yellow" for a few days after the shots. You can always check with your oncologist just to make sure. It's difficult NOT to worry about side effects. Take care, hon and let us know how you are doing.
-
Hi all.
Just had second injection Thursday. All fine yesterday, but this morning awoke after a restless night with pain in one knee. Took paracetemol, rubbed pain relief gel into it, cold compress....... Still painful. Anyone else had this? I can't take ibuprofen because it upsets my stomach. Have some celebrex in the cupboard which I will take tonight. I had some pain after first injection but put it down to the fact I was anaemic. I think that's resolved now. Will pain issues resolve themselves that they do on zometa?
X Sarah -
Had my first night sweat! Had night sweats while on femara when it was working! I hope this means the faslodex is working! I'm also having an increase in headaches. Anyone had headaches as a side effect? I know it's listed as one. I've always been a headachy person. Had CT of brain few months back, which was negative.
Bones ache, but I will adjust!
-
Oh Syr....I hope it means it's working too! No headaches for me on Faslodex....but it's not working for me either.
hugs
Robin -
Thank you, Robin. What makes you think it's not working for you? You've only been on it since July and I understand it takes a while to kick in - that's why the 3 loading doses.
-
Syr.....New enlarged lymph node in my neck and the TM's doubled on my last bloodwork. I think he will be talking chemo tomorrow.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team