Faslodex Girls Thread
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Hi ladies,
First off I’m happy I found you, this is the most informative thread on Faslodex ever. I’m here for my mother, she does not speak English, I apologize in advance, I saw that the tread is for BC warriors only, but I’m her source of info from Internet.
She has bone mets and today was her first Faslodex shot. She said it was a breeze. I hope it will be like this every time. I have 2 questions. First, she has low hemoglobin, but her Onccologist says that Faslodex can’t be combined with iron, folic acid and vitamins, is that true and are there other alternative stuff she can not have. For example curcumin, Transfer factor, wheatgrass etc.
And my second question, can faslodex alone stop bone mets progression?
Sorry for the long post and onc again, so happy to have found you!
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Rainbow,
I've been on Faslodex for seven years. My oncologist has never told me to stop taking vitamin supplements, so I continue to do so. I don't know about the alternative stuff.
Faslodex alone has helped prevent or delay progression for many.
Good luck to your mom!
Tina
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Rainbow, I don't know the answers to your [very good] questions, but "welcome" to you and your mom. She's lucky to have you in her court. Have you all read the string for advice minimizing any pain on getting the shots?
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Thank you, Tina and Lynn!
Sounds encouraging!
We read the “title" advice and thanks to this, an obviously experienced nurse and may be luck, my mom said that the pain was only during the shots and was quite bearable. After that -nothing. She feels good, no red swelling, bums. I really hope next time will be the same. The nurse was very nice and told her to lay on the bed and everything that is suggested here, actually.
Thanks again, countinue reading the post here, helps a lot.
Rainbo
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Hello everyone, My mom is continue to feel lower back pain after the first shot of faslodex. It been 12 days now. Can anyone please suggest/advise on this?
I thank you and wish well being for everyone.
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Sharmal, are you and your mother absolutely certain that this is not unrelated, i.e. such as muscular? Can she feel a sore muscle by pressing on various areas of her lower back? Sometimes I find that I attribute pain to MBC when it is not. I pulled a muscle in my lower back moving Christmas packages in December and was convinced it was progression. If this is not the case, perhaps she should contact her onc and report this pain.
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JoynerL, this seems to be muscular as she feels sore muscle in lower back area on pressure. She does not feel comfortable in morning as during that time lower back pain is high. She takes pain killer to deal with it. She feels this pain intermittently during the day.
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I would think that it is muscular and not related to BC if she can identify the painful muscles. That said, I'd check with the doctor to be sure. That's encouraging news to me. Good luck!
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Thanks JoynerL, i was just wondering if it is not due to the side effect of Faslodex medicine.
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Sharma, I've never heard of that sort of pain being a side effect or a result of the shots, unless the nurse accidentally hit a nerve. However, I think striking a nerve has very specific pain areas.
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My time as a member of the fanny pack has come to an end. After two years on Faslodex and Ibrance, I have experienced progression. I am bummed. I found the combo to be easy to tolerate, and I continued to live a normal life. For anyone who is just beginning the combo, I want you to know that it can work. During the past two years, my breast tumor disappeared, my bone mets improved a bit then stabilized, and my liver mets were not visible. Unfortunately, the liver mets have returned although they are smaller than they were two years ago. So I am moving on, but I still have my fanny bumps to remind me of my time with the pack.
Thank you all for your hints, encouragement, and support.
Hugs and prayers from, Lynne
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Well, damnation and hellfire! Lynne, I'm so very sorry to hear your news. Please keep us posted on your new treatment. Fingers crossed that it will be good to you and very tolerable as well. XOXO
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Oh, thats a bummer. I'm so sorry you didn't get more time on the combo. Good luck with your new treatments and hope it works well for you.
Hugs,
Kathy
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Farewell, Lynne.
I'm sad to see you leave the Pack and will miss your smiling face. Please let us know what your new treatment will be.
Wishing all the best for you,
Tina
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Sending support and strength to you, dear Lynne. You are always there for all of us, and we are lovingly here for you.
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Thank you for your support. My new treatment might come as a surprise to many of you. Because I still feel great and my liver numbers are good, I was given the choice of tamoxifen or Xeloda. I seem to have a fairly lazy cancer, so I decided to try tamoxifen. I am trying the anti-hormonal and avoiding chemo as long as possible. I don't know if I would have been able to have tamoxifen if Xeloda failed, but I know that Xeloda will still be an option if tamoxifen fails. It gives me a psychological boost to realize that because I have a lot of living left to do, and the more options I have, the better. Of course, I plan to stay on tamoxifen for years, and by that time there could be many new treatments available. One side note for those of you on Ibrance - I picked up a 90-day supply of tamoxifen yesterday at my local pharmacy. I started laughing when I was told that the cost was $5.32. I guess I won't need copay assistance. I would have no copay if I used the mail-order option, but I think I can manage that huge $5.32 every three months.
I will continue to read this thread because I care about all of you here (and maybe I just can't mind my own business). I hope that Faslodex treats you well while destroying those cancer cells for many, many years.
Hugs and prayers from, Lynne
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Lynne,
Glad you don't have to start chemo and was given a choice of the next drug. And that was a surprise that you get to start on Tamoxifen. I was 1st started on Tamoxifen when I was first dx. And I stayed on it for 7 years before progression. And yea, those meds are really cheap compared to the Ibrance. Hopefully you will get a good long run on it too.
Hugs,
Kathy
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Lynne: your new treatment plan of Tamoxifen really surprises me. The old theory was Tamoxifen is for pre-menopause, but it seems more and more older ladies are re-visiting that drug. I had good run on Aromasin for over 2 1/2 years and Faslodex for over 3 years. My initial diagnosis of IDC with Lobular features, almost 8 years ago, now changed to ILC in the peritoneal carcinomatosis, though it is still a lazy cancer too. I don't have many symptoms to remind me daily that I have cancer except on CT scans. Currently I am on Adriamycin & Cytoxan second cycle (ONC said to use it before my liver deteriates), the SEs from chemo are much worse than cancer symptoms. I have been thinking to ask ONC to stop it after 3 cycles, and to put me back on some easy, maintenance, cheap drugs. You gave me a good idea with Tamoxifen! I guess on stage IV we have the right to ask for quality of life. Thanks for sharing with us, especially for your thoughtful and caring posts.
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Cling, Before I went to my appointment with my MO, I looked through Bestbird's MBC guide to see what treatment might be next. There it was in black and white. Tamoxifen is recommended for post menopausal women who have not previously shown resistance to it. It can be tried even after an AI and Faslodex have failed. If my MO hadn't included it as a choice, I would have asked about it. I hope your onc will consider it because you are right, QOL is important.
Hugs and prayers from, Lynne
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Hey Everybody,
I was diagnosed with MBC to the lungs after 12 years NED. I was originally diagnosed Dec 2005 stage 3B, now I am stage 4. I broke a rib back in April 2018 and then developed pneumonia, it led to my doctor sending me for testing. Cancer markers were tripled and CAT scan showed enlarged lymph nodes in my chest wall. PET showed lungs uptake and biopsy showed MBC and not new cancer.
I started Kisqali 600mg and Faslodex shots this week. I feel distant, don't know if it is a side effect of the medication or my brain disconnecting so I can wrap my mind around this diagnoses. It was such a shock after all that time being diagnosed again. I was down to seeing my onco once a year. But I am up for the challenge, I believe OUR healing is here.
I haven't been on the site in years but I am so grateful that I have you ladies. I really need someone who understands right now and I know each of you do.
Anyone else on the same combo as me? My insurance company wanted $3,000 co-pay for Ibrance so I was switched to the Kisqali. Much more affordable co-pay thank God.
Blessings to each of you. Good days, sweet sleep, a healing spirit!
God is Able
Love Benita
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Benita, welcome! We're sorry that you have to be here but glad to have you among us. Have you read through the string? There are excellent suggestions and guidance for making the shots more tolerable (the actual shot process, rather than any side effects, of which I personally appear to have none after 18 mo). You may want to read back through the string and ask questions. Good luck, my dear!
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Hi everyone, I'm in the middle of reading through the thread but have a question that I haven't seen yet - it's taking me while to get through 93 pages of wisdom
I had my second round of shots yesterday and in the evening experienced very scratchy eyes. They were a little swollen but not much, no rash, no breathing difficulties. They are still scratchy today. Do you think this could be the start of an allergic reaction? Has anyone else had this and it turned out to be nothing?
Benita, we're starting at almost the same time, wishing you an easy shot and a long run with the fanny pack!
Jen
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Hi Jen,
I will have my 8th shot on Monday and have not experienced anything with my eyes. So far the shots have been pretty tolerable with no major side effects other than a sore butt depending on how deftly the injections were made.
Sorry... not suggestions regarding the eyes.
Pat
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Hey JoynerL and Jen,
Thank you for the warm welcome JoynerL. I am taking Kisqali too anyone else? Jen my first shots went really well. I felt this strange ultra sensitive sensation on the last shot but no pain. I went grocery shopping after to get my walk in and I think it helped. I go in 2 weeks for my next shot but I am taking 600mg of Kisqali daily. I am immediately having issues sleeping.
I pray all goes well for you too. Hope your eyes resolve quickly.
God is able!
Benita
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Welcome to the Fanny Pack, Benita and Jen!
Jen, I've had no allergic reaction in my eyes that I can attribute to Faslodex. I will add that one or both of my eyes get crazy itchy and swollen sometimes for no discernible reason. I squirt them with Visine for Allergies. pop a Claritin and throw out whatever mascara I've been using.
Bottoms up, all.
Tina
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I have been getting Faslodex shots for two years. Started on Ibrance about 3 months ago. My eyes started burning about a month ago. I called my oncologist's office - he thought it was allergies. Told me to take Benydrl and put drops in my eyes. Don't know if that helped but the eye problem is gone. Never had allergies before.
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thanks for sharing your experiences. My eyes are still a bit gritty, nothing too bad. I've swapped out my towels and pillowcases and am washing my hands a lot in case it is just standard pinkeye. I did a bit of googling and conjunctivitis is a known side effect of Zometa, which I also had on Tuesday. I've been on Zometa for just over two years and I think this is a new side effect.
Hopefully it's just a side effect and not an allergic reaction - I guess I'll know in a few weeks
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Hi All,
Hope everyone is having great weekend. I need to seek advice from you guys. I have posted earlier about it too. My mom had 15th day shot of Fulvestrant 500 mg a day before yesterday. She is experiencing whole body pain specially back pain. This time it is severe then it was after first shot.
I want to know if this is due to faslodex/Fulvestrant side effect. This pain is more during few days after the shot. I am really worried about it. Please help if any body can guide me regarding it.
Regards,
Lalit.
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Lynne, so sorry to hear about your progression!! I know though you will hang in there and fight your way through. xxx
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Lalit, has your mother talked to her onc about this? Some people have some significant pain after the shots. Did she try the Claritin (or the generic loratadine) 2 days before, day of, and 2 days after the shot regimen? It is discussed in the string. That has helped a lot of people. I do wonder if the nurse is hitting a nerve with the shot. Have you gone back and read the string for input and thoughts which might be applicable?
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