Faslodex Girls Thread
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hi all. Met with my Dr Thurs. Tms were over 300 in March, dropped 100 pts after second cycle of Falsodex and ibrance. Dr says next round will tell whether combo is working, tms and scan. Fingers crossed. I have found that lying down while getting shots really helps and I've had almost no pain. Also this last round didn't make me sick at all which was nice. 😊
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This is my first time posting so I hope I do not do something wrong. My history is Stage 1b BC 2009 with treatment of Taxotere and Cytoxin. Brac 1 gene, bilateral mastectomies and reconstruction. Recurrence left lymph nodes 2015 with 2/21. 30 rounds radiation Now considered Stage 2 and was started on Aromasin and Faslodex at that time. I am experiencing severe joint pain especially hips and pelvis. HOT FLASHES and increase blood pressure. My 24th round of Faslodex due next week and I want to stop and just continue Aromasin. I also want you girls to know I am a stage 3c-4 Fallopian Tube cancer survivor for almost 20 years . I am 67. I had a year of chemo at that time with Taxol, Cisplatin, Carboplatin and Topotecan. Of course that was after major abdominal surgery as I had Mets to peri-aortic lymph nodes. Then 12 years later the breast cancer. All of you women are so brave and I feel the love between you. I see MO next week and will let you know. I just wanted to tell you also that I lost a 36 year old niece to BC a year ago (Brac1)and now another niece is Brac positive. TY for listening. Just a quote from Paul Simon "Still, I continue to continue to pretend, my life will never end, and flowers never bend with the rainfall." I forgot to say that my symptoms are getting progressively worse with every injection and my MO said he is treating me unconventional for my stage, however he has always been this way with me. I realize he is out to keep me alive, the big cancer center Moffitt where my lymph node dissection was done thinks I am over treated right now. By the way I am from Tampa Florida. Sorry I keep editing this. ER PR positive Hers2 negative Failed Tamoxifen after 5 year
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Hi ladies. I got my second set of injections today. Hope everyone is doing well.
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Mel- I got them two weeks ago and I am still sore. Going to try heat the next time as someone suggested. Hope you aren't sore from them
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Girlwcurl - just look up Bowen therapy. There are list of local therapists. It is a soft touch gesture that speaks to muscles to pull joints back into place. Helps with so much. It can be done with a feather even. Very good when pain is an issue from the lightest touch.
Snarly - we can call you that, MCK54. I like that. I was Mad Bluebird for awhile. You can change your username on your profile, at least I could back then. Keep the same image so people recognize you and get used to the change.
Still waiting to know if I will be on Fas plus the Xeloda. Or what?
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Hi NineTwelve & Zils,
My dizziness isn't related to low blood pressure or dehydration. I get headaches also but Ithink that is due to overuse of the small screen! I had a brain scan about six months ago and got the all clear. The dizziness stopped for a month but came back. I've taken Serc (betahistine) and stematil (prochlorperazine maleate) but nothing works. If I knew for definite it was a SE others get I would just put up with it but there's always the dread that it's brain mets. I guess I'll have another scan...
Hope you're all keeping well
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MCK, what a great team you have there with your very own pharmacist and psychologist. It takes a village.
Nine Twelve, I like how you are making your home more supportive by making more space for your yoga, etc. And I appreciate your wise words about the importance of contentment, joy, and serenity. I like the word "well-being" because it seems to encompass body and mind, and I like to think some measure of well-being is attainable by us all, whatever our circumstances. I also like author (and doctor) Naomi Remen's distinction between cure and healing (Kitchen Table Wisdom: Stories That Heal).
NT and Girl, I third the recommendation of Anti-Cancer by David Servan-Schreiber.
Pajim, thank you for putting the IM Injections nursing guidelines at the top. I carry a copy with me to appointments, and I actually showed the nurse the diagram of the Z-track technique this week. She asked if I wanted her to pinch the flesh, and I said no, but see this picture... I also showed her pictures of the possible injection locations and talked about what seems to be best for me. (My favorite nurse is not always there, so I will have to train the others.) The shots went well. I think I am getting used to them.
Girlwithacurl, did you get a blood test that day? Cuz that would be five pokes total. Areyou going to schedule it differently in the future?You, too, Zills?
Hello, Candice. You have certainly seen a lot of cancer treatment. Wishing you well! Perhaps some of the side effects will lessen as your body adjusts?
Aoibheann, have you considered benign positional vertigo?
LvinAZ, glad to hear you are doing well! Dianarose, phew, good to hear that it was just a kinked line and no ER. Hello to melmcbee, Bluebird, and all the other Faslodex Girls.
My report: Recent scan was generally better with lower SUV, but some lesions looked bigger (necrosis?) and TMs still rising (flare?). My onc will give it one more month for a total of four, and if the TMs rise again, we will look at liver radioembolization. For me TMs are accurate.
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Shetland. I had forgotten about BPV. Home exercises help. It has to do with the crystals in your ears. My onc said headaches are an SE.
I'm not familiar with those meds. I know there is a patch that goes behind your ear that helps with nausea and wrist bands that mimic acupuncture. They are called sea bands.
I had episodes a lot right after Keira was born. I finally got tubes put in my ears and that seemed to work the longest. I could feel fluid on my ear.
Good luck. It's a miserable feeling.
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Just thought I d add to the info I ve learned regarding injections of Fas. and Xgeva. For those experiencing burning during the injection, ask how long the drug has been out of the drug fridge. If it s only 15 min, ask to wait a little longer (up to an hour) as I ve learned it should be brought to room temp. up to an hour before. It s so thick. In addition if you re also getting Xgeva, ask the nurse if she can use the finer needle on the syringe as it s injected just under under the skin
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TY Shetland for response to my post. Appreciate all the helpful info from all of you. Keep on keepin on is such a good motto for us all! Here's to a great weekend with some love and fun. A friend has BPV there is some maneuver you can do to at home to shake off the crystals, I will try to find out. Is anyone on aromasin with faslodex ? Appreciate input
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I survived my 4 shots. I felt sore and blah for a few days though but I think it was really the lupron that did me in more than the Fas. Estrogen suppression is no joke (Lupron rage is real!). I had blood work done the week before so I said no way to that this week.
Shetland, crossing my fingers that those TMs start behaving.
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I survived my 4 shots. I felt sore and blah for a few days though but I think it was really the lupron that did me in more than the Fas. Estrogen suppression is no joke (Lupron rage is real!). I had blood work done the week before so I said no way to that this week.
Shetland, crossing my fingers that those TMs start behaving.
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I saw a T-shirt -- no idea where -- that said, "I am sorry for what I said on steroids." Feel free to fill in the blank with Lupron instead, or any other drug we put up with.
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I've had the lightheadedness too could be dehydration I think I overdue my wine a bit 2 glasses at night chills me but fas is alcohol based so I'm probably not doing a good thing for myself
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Shetland my onc likes tumor markers too, the thing is mine were never that high even with my 1st cancer and it was stage 3c/4 and my breast ones were never elevated I guess many MO go by TM
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I am almost positive when I had my two shots 2 1/2 weeks ago she hit my sciatic nerve. I have had the worst back pain ever since and my low back has a big swollen part like a goose egg. I had sciatica many years ago and the pain is the same, goes right down my legs. I think she goes to deep with the needle. I am a tiny person and not much of a booty. Does anyone know just how deep the needle is supposed to go
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Dianarose I m so sorry for the distress you re feeling. Pain can make a person feel like the life is sucked right out of you
You def could be right ! The syringe used is usually 21 gauge, 1 1/2 in needle. But the real issue is If the injection is landed too low, sciatic nerve pain can occur, but rarely happens. . But Both the sciatic nerve and Fas. injection sites are only cms. from each other so if an inexperienced nurse gives the injection it s a possibility.
The nurse should feel around for the right spots before giving the injection. I d suggest giving your oncologist s office a call asap. Regular physicians may not be that famoliar with thick, large volume injections such as Fas. so may brush your pain off to you just having cancer.
I ll bethinking of you ...let us know how you make out
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Diana rose I agree with mck54, I am also very tiny person not much booty either I have bad hip and pelvic pain worse since last two shots given by same nurse I am going to ask for my previous nurse this Friday I get sharp shooting pains she was a sweetheart however I think my previous nurse more experienced also I never had as large as these goose eggs with prior shots they have gone down but usually they were never that big until last two times thinking of you!!
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just wanted to say asked friend re: BPV u can go on u tube exercise for those crystals is called Epley Maneuver good luck on those dizzy spells keep hydrate
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I don't know if it's because I'm not looking forward to dose #2 tomorrow but I'm very tired. I'm also on ibrance (round 17). Is there anything I can do to combat the fatigue?
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I have not had Ibrance but I am so fatigued going for round 24 fas on Friday going to ask once to stop so tired especially since last two injec in ur case prob ibrance I am not sure what to say except God Bless Us All love all you GF'S of Fanny Pa
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I had my first injections today. It wasn't too bad but now I'm a bit sore. Feels like someone kicked me in the butt. So I'm lying on a hot heating blanket and it feels great! My face is very red so maybe I'm having the hot flashes already.
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Eljawedt Way to go sista. ! Try massaging the injection areas as well and try to keep moving in the day. The nurses at my clinic that s the real secret to handling the side effects. The sites will hurt for a couple of nights. If it s too painful keep the Advil going to keep ahead of the pain for a day ahead. I take mine ahead of the injection. I sleep on my side so it may be hard turning at night. You may have a hard lump for a week or so but it ll soften out. According to my Onc, Fas has one of the most success stories in advanced cancer and fewest side effects The hot flashes are a bummer. I keep a very cold gel pack nearby and put it on my chest if I wake early morning with them. I also bought this little $8 battery operated hand fan nearby. Welcome to the crazy Fas gals site. Those flashes drive some of us crazy and we get creative in dealing with them
Keep us posted . There s lots of great gals out here for support and advice.
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thanks! I'm feeling quite nauseous this morning. Is that a common side effect
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Eijawest Yes I too felt nauseous for a couple of days I actually felt awful the first 48 hrs following the first 3 injection periods. Like someone hit me with a brick. But. by the 4 th injection it s like my body got used to the meds and last month I had few side effects. Just listen to your body and take it easy. I ll be thinking of you. Take care. Sometimes I wonder what s worse...cancer or the drug
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Adding my input to the discussion of Dianarose's question -- I am looking at my copy of Large-volume IM injections: A review of best practices. (Link at the top of this thread, thanks to pajim. If you are up to it, master the contents and carry a copy with you to your appointment. Last time I actually showed a nurse the diagrams of locations and the Z-track method as we made our plan for that day's injections.)
Based on my reading of it, I think that not properly landmarking the injection location could be the main reason for your sciatic pain. The article says:
"Inexperience with injection techniques and inaccurate landmarking can result in injection-site pain or injury. Sciatic nerve pain can occur, though rarely, if a dorsogluteal injection is given too low. This risk can be attenuated by selecting the upper and outer quadrant of the buttock." As MCK said.
As far as needle depth, my favorite Fas nurse told me that sometimes just pulling the needle out a little per patient's request can make the injection more comfortable. The article only says that not advancing the needle to full length can be a reason for unsuccessful injection, and says heavier patients may require a longer needle. That is the opposite of our problem, but it does point out the importance of depth.
It looks like the alternate site for a Faslodex injection would be ventrogluteal, so you might see if the next nurse is comfortable using that site next time if you are still sore from the last one. But the article says not all nurses are comfortable/trained in using this site.
I keep a written record with date, name of nurse, notes on my position, notes on how the injections felt, and notes on length and severity of post-injection pain. I also take a photograph at home to record the injection locations and any bruises or reactions, to show the nurse next time. I think this information has helped me improve my experience because I can communicate better with the nurses about what does and doesn't work well for me, and ask for the best ones. I just approach it with respect and appreciation, as a team problem-solving thing. I have taken to holding the syringes in my hands under a warm blanket, and I always remind the nurse to let the alcohol dry to prevent stinging, and to go very slow.
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thanks mck54. That's good to know. I was hoping that it would just take time for the body to get used to it.
Yes, you do wonder which is worse. I had my eighth (and last) chemo four weeks ago and thought I'd be feeling almost "normal" by now. I'm sick and tired of feeling sick and tired
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Elawest. You poor thing. I can only imagine how you re feeling. I m on the opposite coast in NL and have heard great things about cancer treatment advances in BC. so you re in good hands there I m sure.
My Onc gave me a couple of choices for stage 4 treatment. I thought I only had months to live...was actually told that...went from never being sick to stage 4 cancer!! I told my Onc I wanted a treatment that gave me a good quality of life. So I didn't t have Chemo but one never knows with this disease about the future.
But patients I ve met at my clinic said the injections and side effects are a walk in the park compared to Chemo so you shld do pretty good with it after s couple of months, although everyone is diff.
I m heading into my 4 th injection month and didn't t have much in side effects the third month. So try to hang in there. darlin' This is not an easy path.
I know what you mean about wanting to just feel normal. Most of the month I feel great but then along comes injection and blood work week. Going to the cancer clinic just reminds me I really don t have a normal life anymore. I can only imagine what it s like to be tired and sick. It has to be tiring.
When I came home today there were 5 cancer clinic letters all with diff scan and injection appointment dates plus Onc visits for July Aug Sept and Oct They kind of made me go to the dark side in my thoughts for a few hours. I couldn't t even have a glass of wine without guilt..lol...Clinic letters are my. wrest form of junk mail. I try to ignore them for a few days
Every night I light a little candle to celebrate another day of living. This one is for you my friend in the hopes you start to feel better soon.
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eljaywest I agree I am also sick and tired of feeling sick and tired my primary doctor let me cry my eyes out 2 weeks ago I am going for 24th round Fas on Friday it hurts and I feel sick but please keep up your spirits my onc said my attitude has helped me is that right Shetland pony? I know u have a good one did I ever say how cancer has made me stronger or is that my imagination? I just hate it tho!! Keep stron
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Hi all! Long time cancer girl (13 yrs) on Ibrance and Faslodex with good results.
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