Faslodex Girls Thread
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MCK what a lovely message! thank you and thank you for lighting a candle for me - that's so sweet.
This is great website. So nice to connect with others. I do normally have a very positive attitude but it's great to be able to be open with others that know what you're going through.
Lunalin- that's fantastic! I was 14 years from my first diagnosis so if I get another 14 I'll be thrilled! I'm so thankful for those years and how many things I did.
I'm still feeling nauseous today from the fas - have a horrible taste in my mouth and this is weird but I feel like a can smell something unpleasant.
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it's not weird. I definitely smell different. Haven't needed deodorant in 4 yrs but sure need it now! Nurse said she never heard of that before but the change in hormones could do that. I'm just hoping for less dry skin! And the smell goes away soon.
Received my second loading dose yesterday. Some site pain but good after I rub it. If I don't get the lower back pain, I'll be a happy girl.
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Zills, because you mentioned your drug combo and fatigue, I just wanted to make sure you know about the following thread, in case you want to participate in it as well as this Faslodex one:
Faslodex + Pablociclib [sic] (Ibrance) treatment combination
https://community.breastcancer.org/forum/8/topics/...
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Eljaywest, four weeks is not very long to recover from chemo. I think your sick and tired feeling will improve.
MCK, about appointments. What has helped me is to try and consider them just a routine part of my life, and I have found good things I can like about that day: Connecting with caring people at the cancer center who know me by now and who I remember too, and chat with them a bit about non-cancer things. Eating at the cafeteria that actually has good and inexpensive food, or getting a treat after my shots. Enjoying the nice plants and birds around the campus -- I feed the birds crumbs if I want to cuz I'm a cancer patient and I can do what I want. Enjoying the company of the person who comes with me. Going on BCO on my phone in the waiting room. Stopping for some shopping or a museum on the way home. Also, I ask to schedule things in the way that interferes least with my life.
Candice, crying is a normal reaction to this situation. Then we pick ourselves up and keep going, right? I think cancer showed me how strong and courageous I actually am, and the experience has emphasized how much the kindness matters in the world.
About the smell, I notice a chemical smell when I use the bathroom the day of my shots. I assume it is the castor oil etc. carrier, though it could be the Fas itself. What is the taste like, Eljaywest?
Hi, there, Lunalin!
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Leaving the butt thread after a very short stay due to progression. Wishing you all ladies a good and long run on Fas.
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Linda-so sor
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Not bye, I'm sure I'll see you again.
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Eljawest You are more than welcome. When I was growing up my mother always lit a candle at night for someone sick or worried etc. So it was a natural thing to do for you.
I had my Fas injections today (4 th month) with Xgeva. It all went well although feeling a little more tired than usual now 5 hrs later. i took an Advil beforehand and drank lots of green tea and water.
I now find lying on the bed face down works best for me. The first month I stood up and the nurse kept telling me to try and relax my leg muscles but I guess I was a little anxious and I didn't t relax enough. It hurt.
After my injections this morning I then walked 30 min afterward to ensure the Fas. was getting absorbed. I m now a little achey and have two mini hot water bottles tucked under my butt. She also said that by the 5 th month injection, patients usually have very few side effects.
I asked my injection nurse, who s been giving them for a few years, for any tips she s learned from patients etc. She said it s most beneficial to ensure the Fas that s usually stored between 2 and 8 degrees Celsius, to be out of the fridge for up to an hour, at room temperature, as the drug is very thick when cold.
The nurse also said the syringes are for most of the time at room temperatures as they re mostly kept in a drawer or shelf. So the most important step is to warm the drug rather than the syringes. Just leaving it on the counter for 50 min or so takes care of that step.
The nurse also switched to a finer gauge needle to inject the Xgeva under the skin. I hardly felt it.
I now don t mind the monthly injections. But every month in the 24 hr before, I go through the "Why Me Lord" thought process. Perhaps as my ROnc said, it s just a case of me having bad luck.
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Linda, darn. I'll see you on the liver mets thread.
MCK, yes, the latest research shows that random genetic mistakes as cells divide play the biggest role in cancer. In other words, bad luck. Like you, I find it easiest to relax the muscle lying face down on a flat exam table. The next day I feel tired, and it's hard to say if it is physical, emotional, or both. In addition to walking, do you massage the area the day of the shots to help distribute the glumps (my word for gluteus lumps) of Fas? That seems to help, too. I don't follow the distinction between the drug and the syringes. Isn't the Fas pre-loaded in vials out of the box? I am given the vials to hold and warm, then I give them back and the nurse attaches the needle. But I don't watch that because I don't want to see the needle. That's right, six years of dealing with bc, and I still cannot look at needles.
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Linda...healing thoughts and warm hugs to you.
ShetlandPony Yes I honestly believe in cancer being a genetic mistake too and that perhaps my T cells weren t functioning like they should. I ve always had problems with energy pre cancer days although I m a busy gal.
I sometimes think my be could also be environmental as 6 of us teachers who taught in an old section of a school all now have cancer. So who knows! I m beyond dwelling on "why me" most of the time.
I did think I had none of the usual risk factors but I started my period when I was only 10 yrs old and had my first birth (twins) late, when I was in my 30 s. Both of which matter apparently for bc
I pick up the box of preloaded Fas. vials from the pharmacy and keep them in the fridge the day before injection. I go to an early fitness morning class so my gluts are pretty loosely goosey by the time I get to the cancer clinic. The Fas has been at room temp 50 min or so. The nurse does everything out in an adjoining room so I never handle the Fas vials. I don t want to...lol
The first time I got the injection I didn't t take the Fas out of the fridge and the nurse asked me if I had because it was so cold and thick and it kind of burned going in. She then said she couldn't t slow down the rate of injection too much because it was so cold and slow going in and next time I should leave it out for a bit. That s worked. My clinic nurses just do hormone injections so I trust them.
When I lie down on the bed, the nurse spends a couple of minutes just massaging both glut areas before she injects. She then aims the needle like a dart. I also have had two warmed get packs under my butt in the car on my way over and back from the clinic. I also walk after. I noticed today there s no hard glut lumps at all after the injection and very little soreness.
I m a chicken too!! Lol! I don t like to look at the needle either. I m just chatting away trying to take my mind off it.
I m doing exceptionally well for someone with a grade 4, stage 4 cancer. My bone mets are healing in just 3 mo on Fas. My Onc is surprised by my positive attitude but it s the only way I can deal with all this. Otherwise I d be Out of my mind I think wondering about my future. Plus the diagnosis process was brutal! One bit of bad news after another for me. It s like now the pendulum has started to swing the opposite way at last thankfully.
I try to look at my cancer as a "chronic" condition. I initially just thought I would just go home and wait to die ...true!! but after updating my will etc, I said to myself, enough of that sh-t Instead I focused my efforts and thoughts to changes in my lifestyle of diet and exercise. At least I had some control over that. I seemed to calm down a little and more my normal self.
So now I just continue to keep busy and only go to that dark side of my thoughts about cancer around injection time. I have a daughter just starting a family and her twin sister just got engaged so have a lot to live for. This Mothers Day will be a whole weekend event!!
One of the best decisions I made was to only tell immediate family and a couple of close friends. So I don t live with cancer being the centre of my life. Our Acquaintances just don t know. That has worked for me because people aren t looking at me as if I m a ghost or asking me stupid questions but everyone is different. So I m living a normal life, at least for now.
I find this site amazing. So many other women offfering advice and so knowledgeable. I love how the threads are all set up. It s a real support !
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Hi all you girls! Yes Shetland good attitude a must, I put a Be Kind sign on my office door given to me by my RO nurse I see both Mo and RO Monday love all you girls have had HA's And high BP had brain MRI today so we will see night from florid
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Linda I have only been on thread posting recently don't you ever give up I had stage 4 Fallopian tube cancer 20 years ago with Metz I'm still here fighting BC love you
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Lol, Candice. I didn't exactly say that good attitude is a must. Nice office door sign! What are HAs?
MCK, may you continue getting good news. And have an awesome Mothers Day.
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Hi Shetland HA is headache , sorry we use it in the medical field , my brain MRI showed no mets, TY God!
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mck54, it's amazing how we get those risk factors, mine is definitely family with the brac gene for both my cancers and they were 18 years apart the girls at my onc off wear necklaces which say "Cancer Sucks"one of the RO docs gave it to them Oh and yes I had a doctor mention environment to me until we found out about my brac gene, also I have no children but go figure I know young women with cancer who have 3-4 children and at young ag
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Candice Just love the necklace idea. Cancer does suck! Treatments suck even more too!! At least you know your cancer is genetic. In my initial Onc appointment she drilled me about how much alcohol I drink..She was probably reaching for straws after asking me about family history, hormone drugs during menopause, environment etc etc. I kept repeating...very little! Maybe 2 glasses wine every 2 weeks! Meanwhile my girlfriend has 5 or 6 vodka and cranberry drinks every night. Yet I m the one who gets the disease. Go figure. I like my RO interpretation..." it was just your bad luck" At least that version doesn't t drive me into .insanity. I hope everyone has a wonderful pain free Friday
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Hi MCK54! I drink 2 glasses wine sometimes 3 a night! Fortunately all my docs say that is not my issue OMG you hardly drink !! My husband gets on my case but my MO says live your life, I'm not adrunk by any means, it takes the edge off ! Love you and keep in touch here is to the butt brigade!! LO
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happy Mother's Day to all the mums!
Candice - I'm so looking forward to feeling like a glass of wine! My DH has lost his drinking buddy. I had my first injection on Monday and have felt horrible ever since. Nauseous every day so far. No appetite - nothing appeals to me. I hope it goes away soon.
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I have been in so much pain sciatic nerve pain since my last shots two and a half weeks ago. I will not let that nurse do them again. This is so ruining my vacation
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Anyone having sudden weight gain and/or fluid retention with fas shots - I've been on them for a long time (almost three years) - onc doesn't answer when I ask and complain nor does Primary Care or nurses - I feel like we are all alone out there some of the time - can't get an answer anywhere except on BCO most of the time. Also have a hole in my ear drum which came out of nowhere - ENT asked me "what did you do"???? Seriously?
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Anyone having sudden weight gain and/or fluid retention with fas shots - I've been on them for a long time (almost three years) - onc doesn't answer when I ask and complain nor does Primary Care or nurses - I feel like we are all alone out there some of the time - can't get an answer anywhere except on BCO most of the time. Also have a hole in my ear drum which came out of nowhere - ENT asked me "what did you do"???? Seriously?
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Eljaywest, I do not have much appetite either I drink some wine with food of course sometimes I think I get lightheaded because fadlodex can also make one lightheaded but my MO said wine in moderation ok, it just takes edge off when I get home from work and I Like It, I drink no other alcohol never really did , it seems I'm always nauseated but certain foods do appeal to me , I am mostly vegetarian nothing to do with cancer lost my taste for meat years ago , I do hope you will feel better soon, I'm on aromasin also so I think the combo does it to me remember small amounts six times a day my Gastro told me that happy moms day to all!!
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Sandy-my ankles, legs and feet swell up daily. I have put on weight as well.
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Never mind the weight and the numb feet. My eyebrows are disappearing! They were never thick but they're now very sparse, hardly there at all. Faslodex? Aging? Bot?h
Thoughts? Recommendations? (When I draw them on with pencils and brushes they look super-fake, but maybe that's just to me.)
Vain Boomer, Tina
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My NP told me that gaining weight is a side effect of faslodex. Personally, it seems to kick my carb craving into gear.
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Sandy, when I started Fas all of a sudden my waistline disappeared. I totally freaked out and they ended up doing an ultrasound to make sure it wasn't ascites.
Sorry to say that the waistline never came back. Sigh.
Welcome to all the new ladies on the thread.
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Cive and Pam,
Yup. Guess it's the price we pay.
Tina
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I saw my Injection nurse today and asked her about some of the side effects of Fas some of you ladies here have discussed such as the weight gain, swollen ankles and changes in taste sensation. She s been giving these injections for a number of years. She said there seems to be neither rhyme or reason for it. Some patients, like myself, haven t any symptoms while others have various aggravating symptoms right from the start. She did say many simmer down after 5 or 6 months. but other patients don t get any relief. Not much comfort I know.
Candace.... you drink whatever wine you want. Going through this ordeal would make a person start drinking. That is between you and your Onc. You won t find any judge or jury here. My mother always said " you should never judge anyone until you walk in their shoes".
Wishing everyone a "feeling better" day tomorrow.
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Thanks MCK54 I appreciate that everyone have a good day, feel better if only our Oncs knew our side effects are very real!! They are there to keep us alive!! God bless them all
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Candace. So true... I find they just pooh pooh any questions re: side effects!. I ve been having hot flashes and keep asking what I can do ...there s meds yes. But they don t always work they told me. The flashes are more annoying than anything
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