Faslodex Girls
Comments
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Well, dang it. My TM's climbed 10 points this month. That's a 20 point climb since I started Faslodex in January. SO... PET scan next week to check for progression. That will determine whether it's time to move to Afinitor+Aromasin. Went ahead and got my 6th round today, so here's to the weekend, right?
DANG. Did I say that already?
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Lulubee, I started monthly Faslodex in Dec - loading dose in mid Nov and first of Dec. I have noticed that my sense of taste has changed and foods just don't taste good to me. Weight loss - ha, that is a joke. Faslodex is a steroidal medicine and I am getting that nice little tire around my midsection and I hate it. Fatigue for me has been quite difficult and I have tried different meds for that but just about every treatment I have low sodium, potassium and chloride. I don't think I have missed one month that I didn't have to have either the potassium or the sodium/chloride. I think that adds to my fatigue.
I have trouble skipping meals totally because of stomach issues and steroids - I have started to watch the foods I eat and I'm trying to walk a bit more each day to get a bit more exercise. I also noticed this month I really had trouble going to sleep and staying asleep the first 4-5 days after my treatment - found that is a side effect of the Zometa. One thing I have noticed is that I used to love a a cookie or piece of cake/pie - but I really don't have a sweet tooth anymore.
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I'm sorry to hear about the rise in TM's, Nan. I'll be thinking of you next week when you get your scans.
Because I am about 40 pounds over weight, I'm sorry to say that the Faslodex/Zometa has had no effect on my desire for food. For several days after the treatment, I get a yucky taste in my mouth but, it doesn't effect my ability or desire to eat. Food seems to lessen that weird smell/ taste so, it seems I want to eat more.
And, no weight loss for me plus, that mid-section spare tire thing is starting to really tick me off. The fatigue has increased for me, too, Nan. Blah. I'm just so exhausted by the end of the work day.Keep the faith, everyone.
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I am on my 3rd month of faslodex an I experienced a tingling tonge that went down my throat and into my stomach, then I felt very very dizzy and had to sit for a while before going home. got home and crashed on couch for 5 hours and when I got up to lock up house and get a drink I fainted in bedroom, hit the end table and wiped everything off of it and water went flying all over everything. Every bone in my body hurt so bad. Has anyone had this happen after injection?
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Anne, I experienced a little dizziness after my first dose and had to rest and relax on that particular day. (I still do that after I get my injections). I always have someone with me for any kind of treatment because I tend to faint when needles are involved. I think the emotional stress can cause physical side effects,too. I just had my 6th dose and I now wake up with a backache every morning. That pain, thankfully, subsides after a couple of hours (I take Advil). Maybe, a friend or family member can go with you to the treatment and spend the day with you, as well.
Because you slept for five hours, I wonder if you could have been dehydrated when you woke. I try to drink a lot of fluids after any treatment/procedure and I have my husband "nag" me about it so, I don't forget. I try to eat "light" for a couple of days (soups, crackers, toast), too.
I'm sure you reported these side effects to your oncologist. It seems they have meds for lots of side effects and if they don't there'll be another drug similar to Faslodex they could substitute.
Take care of yourself, Anne!
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I have had a few hours of mild dizziness after my shots. I have considered using a cane for a few days after my injections, but I have a hangup about that freaking out my kids.
I agree that it seems like extra fluids are very important after these injections. I've been forcing myself to drink more water since my shots yesterday morning, and so far I haven't noticed that barnyard pee phenomenon yet. (Sorry to be so inelegant -- but here we are, right?)
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I had the dizziness with the first two Faslodex injections and I notice that it seems I am a bit more off balance the first week after the injection. I still tend to have headaches but not as bad as the first ones - the darn hot flashes is hardest to deal with. My forehead is wet and poor DH has to wear a jacket because he is cold in the house !
With my extensive bone mets I am having increasing pain and cleaning house is getting more difficult - I really, really hate this tire around my midsection and I'm gaining in my tummy too. I did this before when I was on chemo and had to have steroids and Faslodex is steroid based. I'm trying to walk - anything to get some more exercise. My daugher has offered to have someone come in once or twice a month to clean house - I am not ready for that as it is like giving in to mets.
Ladies, is no one but Aerial and myself having the spare tire problem? Gosh Aerial how did we become so lucky???
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Yeah, how come us??!
I really need to exercise more but, I keep telling myself I'll wait to the school year is over (and my retirement starts!
I'm getting tired of the morning backache, I'm just thankful that it fades away after some heat and Advil!
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No, it's not just the two of you -- I have acquired a tire also. Mine was a gift from Femara and an oophorectomy, but I can tell you it hasn't budged a bit in my four months on Faslodex. I had a small, flat waist two years ago. Now I feel like I look 6 months pregnant. I've had to get rid of a ton of clothes.
Earlier this evening, I felt some occasional waves of post-shot nausea and dizziness, and I thought some fresh air might help. I was alone and a little worried about going for a walk by myself in that shape. So on the way out the door, my eye caught sight of my late grandmother's cane in the umbrella stand. What the heck, I thought, nobody's home to get upset about seeing me with it, so sneak it out to have just in case... and see if it helps. And now I'm just put out. I wish I didn't know that the cane was steadying and actually eased my spine a little. Dang it. It was a little bit of comfort to have it in hand.
I guess I am still in denial about what it means to have bone mets in every vertebral body and all pelvic bones, huh?
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"My daugher has offered to have someone come in once or twice a month to clean house - I am not ready for that as it is like giving in to mets."
No, Nan, it's not giving in to mets. It's getting more precious time for yourself. I've had someone coming in twice a month since my original diagnosis, and it has made my life soooo much easier. Imagine being free to have guests in at any time wthout having to worry if your bathrooms are clean.
Less stress, more energy for fun activities.You deserve it.
My middle section has expanded just a bit on Faslodex, but I didn't attribute it to the meds. If that's a side effect, then I feel better. I thought it was just me needing to cut back a bit.
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I am so tired and still have a headache. I am getting the tummy pudge too. Still feel shaky and don't want to drive if I can avoid it. I have lots to on Monday and hope I start to feel better. Thank you for responding and I am so frightened for the next shot.
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Anne, what day did you get your shots?
I know what you mean about being scared for the next round, but you know, the reaction might be totally different next month. My reactions have varied. I didn't have any remarkable tummy trouble with the first four rounds, but this time, oh boy... I've been right on the edge of nausea since yesterday morning. It's markedly worse after I actually try to eat something. (All food just sounds like a bother, except for Ben & Jerry's Cherry Garcia. Too bad I can't just live on that, huh?) One month I was sleepy after shots, but not so much this time -- my body feels really tired but my head is not sleepy. Weird stuff.
All that to say, hopefully you're just having an odd round and it won't do this to you again. Rest and take it slow today! Maybe watch some old familiar movies that you won't mind snoozing through parts. I think that's what I'm about to do.
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Thanks Lulubee. I had my shots on Friday. I feel like a slug today. I can't get out of my own way plus my head and neck hurts. I could live for a couple of days on Ben & Jerry's. I think I am headed for a nap.
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Anne, some months I have done wonderfully and never knew 2 days after a treatment that I had one and then there are some months that I struggle for about 2 weeks.
The month of April I have been on a Medrol doese pak, 3 steroid injections in my shoulder and then the Faslodex which has steroids - so I have really gotten big this past month in my mid section and abdomen.
Lulubee, know what you mean about the spine and pelvis. I think the radiowave nerve obliteration procedure I had on my low back for pain relief has worn off -that was pre-mets diagnosis. I need to call and see about that getting scheduled again.
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I'm puzzled about something mentioned in several posts recent posts here. It's the first time I've seen Faslodex referrred to as "steroid-based." Is this true? I have never heard this before and can't readily find evidence of it in a quick online search of reliable sources, but perhaps I'm missing something that should be obvious.
BTW, my oncologist says by depriving the body of estrogen, Faslodex slows down the metabolism. This contributes to fatigue and also may acount for some of us developing expanding "spare tires!"
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Well, I learned a new word when I checked the sites about Faslodex.....Asthenia (weakness).
My first shots were on March 23 and on April 4, the horrible weakness started for me and lasted for about 2 weeks.
Also extremely watery eyes for one day.
Then I had one day when the tendonitis in my right upper arm was severe-for only one day.
Had my second shots on April 23, and so far so good.
I am glad that I read about the slow push. My first shots were very quick and I had the extreme pain at the injection sites for 2 hours. My last shots were a slow push, and the pain was only moderate.
So I intend to ask for the slow push next time.
Amazingly, I have also "almost lost" my sweet tooth, and that can only be good for me since I still have at least 25 more pounds to lose.
My mets are in the lymph nodes behind my sternum and I have been on Herceptin for 9 years.
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Tina, I talked about it being steroid based - I'm looking for the article. I'll go back and check the Zometa too as I was reading about both of them. I remember being surprised when I read it because I didn't know that and though "ah, that is what is making my stomach hurt" - steroids really, really bother me. I'll keep looking - I didn't save the article.
I think I have mentioned that I normally have to get either chloride/sodium or potassium and a good place to "warm" the injection for me is to put in between my breast in my bra. My DIL was with me one day and the nurse told us some women put them there. THe infusion time for the Zometa might not be long enough for this to work but works well if you are getting other fluids that take 1-3 hours.
Sandilee, you are right and I am to dang independent - my daughter will agree. Another hang up is that I am not used to my children doing those kind of things for me. As my daughter says - independent and stubborn. I was a single mom for lots of years so it comes naturally.
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This NCBI article calls Faslodex a steroidal estrogen antagonist.
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Well, turns out that Faslodex is being abused by body builders, according to Dr. Google! Who knew? An anabolic steroid that reduces estrogen is the perfect drug for these men. Where do you suppose they find it and who administers? Sometimes, I find parts of this universe that just creep me out.
*susan*
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Tina, I sent you a PM with the link to an article- think this is related to to NCI info.
Susan, I read that too - can you even imagine that they would use a drug like this in their bodies? What I wondered is how can they afford the cost.
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Hey gals,
Okay, I admit I have not read all the posts in a while, ironically because I'm on faslodex, you would think this is the first thread I check.
Anyway, I am dumbfounded that body builders would use faslodex because the main side effect I'm having is the ever increasing fat in my tummy. I'm usually more a pear shape and gain weight in my thighs/saddle bags before my tummy, but holy crap I can't fit into any of my pants right now even though my overall weight is about the same. I blame faslodex for sure (and I've been on other hormonals before without getting the spare tire).
Aside from my flabby tummy, I have to say faslodex is treating me kindly. I just hope it is working on my cancer.
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I am not happy that we are getting the spare tire effect but just relieved that it isn't something that is just a problem that I am having.
Anne, know you are on the Faslodex but are you on Zometa or Xegva yet? The first month I got Zometa, my joint pain was horrible for about 2 weeks.
My first scans to measure Faslodex effectivness is next week. Since my first loading dose in mid-Nov. I have had a whole body PET/CT that showed mets in my hip (new) with 10 radiation tx and then an MRI of my humerus/shoulder that show more new mets (numerous small lesions), both done because of new pain - so oncologist and I are both have worries that Faslodex is not working on the bone mets. Will be interesting to see about the liver and peritoneal mets. Other than Femara, I had not been on other AI's and he went straight to the Faslodex. The RO when he talked to me indicated the next step would be chemo and when we met with my oncologist as a family for my bone biopsy report and treatment plan, it sounded as though Faslodex would be the only hormonal. Know many of you have been through those first set of scans - trying to keep my mind busy. I have liked only having to go once a month for treatment.
Aerial, we started Faslodex about the same time - have you had your first set of scans yet?
Tina, makes sense that these drugs that give us so much fatigue slows down our metabolism - age does that to us also so. I'm trying to walk for exercise but hard with the fatigue. How is the PT and the back?
Ladies, I am having a hard time with my clothes. The spare tire thing has really gotten bad in the last month. Daughter and I are hosting a bridal cocktail party for a friend on May 12th and the wedding is on June 2nd. I so need to fit into my dresses and a linen pair of slacks - I sure can't wear these clinging, hot fabrics in the stores!!! It is a garden wedding at 6 pm -------- I look like the goodyear blimp that has been deformed trying to get into clothes for these two events. I am not trying to loose weight but decided with the "spare tire thing going" I needed to be more aware of what I am putting in my mouth, so I went to Myfitnesspal.com (it is free and kind of like weight watchers) - it tells me how many calories, carbs,fat, protein I need a day. Didn't take me long to realize I was eating bread (English Muffins, bagels, raisin bread) way to much and needed to up the fruits and veggies. I was eating lots of Greek Yogurt with fruit - good protein- but add those carbs to all the bread items and realized I needed to eat a bit more healthy. I use it only as a guide to better eating habits.
You have to try to laugh - otherwise I think I would be on the floor in a pool of tears
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Naniam,
Of course I have no idea what style of clothing you like, but take a look at http://www.eshakti.com/
You enter your measurements and they make any of their clothes to fit you. You can change the length, the sleeves, and many of the collars. I have ordered one dress but it hasn't arrived yet. If you like the styles they offer, I will let you know how I feel about the quality of the work and how well it fits.
*susan*
edited to add: Menopause/aromasin were not good for my weight. I haven't gained anything on the faslodex but my stomach and butt are definately larger. Not an attractive look.
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Naniam et al,
Re: Steroidal vs Steroid
I'm chiming in again on this and hoping a biochemist or pharmacist will happen along and settle the question. I think that the use of the word "steroidal" related to Faslodex probably describes the structure/chape of the compojund and does not mean what we (or some body builders) might conclude: that fulvestrant is an anabolic steroid/performance-enhancer/weight-icreasing agent.But I could be wrong.
My back and hip pain is making me miserable, although I continue to do everything I used to, just more gingerly. The PT does not seem to be having the desired effect, and my therapist thinks I'm pushing myself too hard. She told me to stop trying to walk every day and to concentrate on the exercises she gave me for a while, so that's what I'll do, even though I fear I will turn into a fat(ter) blob. Neither she nor I can guess at how much the Faslodex injections might be contributing to exacerbating my arthritis and pain, and I suppose we'll never know. She is young and optimistic and says she can help me stregthen my back so I can better tolerate the situation, whatever happens.
I've gained only several pounds on the Faslodex,but my shape has become much more lumpen. It's quite distressing. Aging and advance cancer ain't for sissies, ladies. So glad we can come in here and let it all hang out, so to speak!
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Well, I was hit with the waekness today-one week after my shots.
Blah.
Naniam-Since I was first dx'd 10 years ago, I gained 40 pounds. I have tried to eat very healthily and couldn't figure out why I kept gaining.
Last year, my Onc. told me about the WINS study-Women's Intervention Nutrition Study.
It basically said that women with advanced BC should cut their daily fat grams to 33 per day. Women who are overweight have a higher risk of recurrence.
And that was definitely my problem! I had been sauteeing my fresh veggies in olive oil. 1 Tblsp of olive oil has 14 grams of fat!!!! The nuts that Dr. Oz tells us to eat daily put me right over the top.
Since I became very aware of the fat grams, I lost 25 pounds.
After dieting my entire life, this was THE piece of the puzzle for me.
Before I go out to a restaurant, I look up the fat grams online of their entrees. Baked fish is out since it is baked in butter.
A lot of restaurants bake their fish in orange juice which is a much better choice.
So it has now become a way of life for me and is obviously a much healthier diet.
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Denny, I think I have put on 35 pounds since I was diagnosed with BC in 2005 and at the met diagnosis I dropped 10 but think I am up 5 again. I had not heard of that but the MyfitnessPal was giving me 174 carbs a day - that is a bid difference. Thanks for sharing. I took squash, onion and potato and tossed in olive oil with some salt and pepper this evening and baked.
Susan, I looked at the site and did see some things I would like. Please let me know when yours arrives.
Tina, the body building thing and people taking Faslodex for that was mind boggling. I thought that because it blocked the estrogen make it perfect to use the body building steroids. In reading the info at the NHI that says Faslodex is steroidal meant its composition or action of the drug. I just know that I am getting that same tire I got when I was getting Decadron when doing AC chemo 6 years ago.
At my last treatment session, met a woman who had breast cancer and was treated successfully. Remember all those cards on the drugs they give us that tell us the chemo drugs can cause other cancers, especially leukemia? Well that is what happened to her - she developed leukemia and had to have a bone marrow transplant. She was still doing well from the breast cancer. Amazing the people you meet along the way.
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naniam,
The dress arrived today and I am very pleased. The dress is fully lined, fits exactly as I wanted, and the craftsmanship is better than the average department store dress these days.
If you do order, you will get the customization at no charge for your first order. And then after you complete the order you will get a 20% coupon for your next purchase if completed within 10 days, so if you want to order 2 dresses, wait! Then you can use the coupon.
*susan*
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Susan, I went to check out the dress site, too and I'm intrigued! Any chance you would take a picture for us? (Just a neck-down shot-- I remember you don't want your face on BCO now.)
Do you think the basic pattern will skim over these tires we're all lamenting around here?
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Denny, I'm tired and realized you were talking about fat and I was taking carbs. So you don't watch anything but the FAT gam and keep it at 33? I think I had 48 gms. fat today.
Susan, glad that dress arrived and you are pleased with it. Definitely will check out the site now.Lulubee, exciting to think we could look good in our clothes; glad Susan shared this with us.
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I would, but I didn't buy a cute sundress. I bought a dress that isn't on the site anymore for playing the violin. So it is black and very long. Not sure it would show you anything. My camera would not show the detail at all.
I am happy enough with it, that I am ordering some dresses to attend summer weddings.
*susan*
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