Faslodex Girls Thread
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I hold the injection in my armpit as pajim suggests and tell the nurses it will be easier to inject, then remind them about every 10 seconds that it is supposed to be injected over a minute. I only get one nurse, but I think we have gotten the time up to about 40 seconds. I've had 4 rounds and so far have had no pain. I think it's thanks to you guys, but maybe it will get more painful as time goes on.
My tumor markers are almost to normal. I'm on Faslodex, Halaven, and Aromasin. My MO said he will take me off the Halaven at some point to see how I do. My mets are in my stomach and colon. They were on my skin too, but radiation seems to have taken care of that. I have very little energy, but have no pain.
Love hearing from all those people who have been on faslodex for years. I hope all of us have that luck.
Leah, I'm so sorry it stopped working for you, but I hope the new med works wonders with few side effects! Are you enjoying you beautiful little new granddaughter? My daughter had a baby girl about the same time. Her sleep schedule is pretty good, but when she is awake she lets us know it. I don't think she will be a wall flower.
Hugs to everyone! Remember: WARM & SLOW! MaryAnne
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Tomorrow I go for the next set of shots. Should be quick because no iv, no MD, no Zometa. This morning I get up from my desk and walk down the hall. Both cheeks hurt!
Is this like anticipatory nausea?
Funniest thing about it is that most times the shots don't bother me at all.
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Pam, who knows? Out of the blue the other day I had a sudden stabbing pain--like a big insect sting-- at the site of an injection I had weeks ago. It vanished quickly, but not before I actually jumped in my chair and gasped with surprise. Fortunately the people I was meeting with were focused on something else.
Twitchy Tina
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This next Tuesday will be my 7th set of injections. I get the "doubled-up" shots but one at a time so the same nurse
gives them both. I AM 6 ft tall and have to stand and lean over the bed with my hands on
the mattress in front of me. They raise the bed as high as it will go but it is still an awkward leaning position for me.
In spite of that, so far I have had very good luck with my shots. I have different nurses each time, some like to inject the Ventral side area of each hip, others like to use the "upper outer quadrant" of the buttock. Sometimes there is a little bleeding from the injection site, other times I can hardly find the needle stick. I don't think anyone has ever taken as long as a minute for one injection. It usually seems like 20-30 seconds to me.I
only had some intense bruising and irritation on one hip after the last
injection. Also a little itching off and on, but no major problems. I do make a point to walk around and work the muscles after the shots to improve the absorption. I have experienced increasing fatigue each month so it seems to be accumulative, but don't know whether that is due to the Faslodex or possibly the trial drug I may be on. In general I am still feeling "normal" and am getting good scan results, so I am very happy with the Faslodex + Palbociclib/Placebo combo! I am sorry several ladies seem to be having more intense SE's like nausea and pain. I think it just shows how we each have our own unique medical history and are at different spots along the treatment line.Wishing everyone a good shot day and better results!
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Linda, I am 5'6" and I stand with my weight on the side not being injected, then shift my weight to the other for second. I think the nurse bending over to give the shots may be uncomfortable, but I find them bearable, especially since they seem to have stopped my progression, for now.
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Leah, I hope Xeloda works well for you! It worked before for me! Very well for about a year....few SE's
Ladies, I officially join the Fanny Pack today...first injections this afternoon. Wish me luck! I'll let you know how it goes.
(also still taking Afinitor and Aromasin)
Love,
Julie
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Jnb,
Welcome but sorry to have you are here. Today was my third injections. Nothing big except for feeling a bump on my butt. I asked the nurse what it was. Her reply - I put some gauze over the injection site before applying the bandage. I thought an alien sprang up on my butt.
Hope you don't have any serious side effects. Regards.
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Today is my third loading shot and then a whole months break. I am doing fine as far as pain is concerned. My breast care nurse sent a pain consultant to visit me (that is so cool) who put me on Oxycontin and Oxynorm. I believe the street value of these are quite high as people looking for a high crush and snort them. They do work, but I am soooo sooo tired all the time. All I do is sleep. Is there anyone else who has experience with Oxycontin?
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No 56 is behind me. Somewhat painful today, but it is what it is. Now for my post-treatment nap.
*susan*
edited to add: post-nap I feel far more optimistic. Funny how a good quality nap is the best way to increase one's outlook and quality of life.
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highhopes - Thanks for the info. I know the plan is a shot in the arm. Am hoping for no side effects
Joysley - welcome to the Fanny Pack! I lost my taste buds about a week after my first Faslodex injection, and have only partially gotten them back. They didn't come back until 3 weeks after my 3rd round, and I've pretty much lost them again since last week when I got my Lupron injection, so I'm hopeful they will come back again. You'll get used to everything tasting like cardboard
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I started Faslodex with my first loading dose July 3rd. I had another one 2 weeks later. The 3rd loading dose was supposed to be on July 31 but I was in the hospital for 10 days for a lung problem that seems to have nothing to do with the cancer. So my 3rd dose wasn't until August 15. I had blood work done on the 18th and it shows my CA climbed from 300 to 500. My MO said that it could be that way because the cancer cells release protein when they are dying. I have another lab next week. I'm really worried that the Faslodex isn't working and I had high hopes for it. Did anyone else have their CA climb when they first started Faslodex?
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i must have thought wrong. I assumed the bone pain would only last a few days after injection. Today i hurt bad. Please tell me its something else and these pains arent still from that.
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ms., I have never had any bone pain from Faslodex. Are you getting one of those bone injections or infusions too? *susan*
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Me too, still my left side hurts. it gets better when i walk, but the pain is there. I get worried that its cancer in the bones, hip, but then the pain goes completely away the next day, and then it comes back the day after.
What is this ?
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i get 2 injections every 2 weeks.
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Faslodex has changed my "tasting". Before I started on Faslodex, 3 years ago, I had purchased a big order of Keurig K-cups in coconut flavor and other flavors.
They all tasted horrible to me. So any kind of artificial flavoring is affected for me.
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Unfortunately Faslodex has affected my taste buds only in that they want to taste more things, hence my steadily widening hips. Or can I blame that on layers of scar tissue from the injections?
Tina
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hope everyone is enjoying this Labor Day.
Tina, I'm with you! My taste buds have been nothing but excellent. They always have been. And I just keep putting on weight! Ah, well. It could be worse.
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Tree3 and Tina, I'm with you my taste buds have not been effected. If anything I have more of an appetite than before and the scale is showing the results. As of today, I am going to make a conscious effect to eat healthier, lot of fruits and vegetables (I hope). Yes, it could be worse.
Take care and enjoy the day
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Right there with you all. Actually, when I started the drug I gained an immediate 6 pounds. Freaked me out. Ultrasound showed nothing.
Of course the other 6 pounds I have gained on this drug cannot be blamed on anything but my sweet tooth.
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My appetite is always good. But now that I am also on Kadcyla, the steroids that I have to have with it, increase my appetite.
I know that I could lose if I cut down on carbs and fat, but with my constant nausea, the carbs do help to settle my nausea a bit.
I am basically maintaining my 30 pound increase since first being dx'd 12 years ago.
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HI All,
First time posting in Stage IV forum. Found out last week I have mets on Spine and Liver. I'm a complete wreck. Did not even see this coming. I am sure you understand all too well
My chemo cocktail is Herceptin/Perjeta and faslodex. I have been told that Perjeta may show some hair thinning but most don't experience complete hair loss. I did Herceptin before and there is no hair loss there. What about faslodex? Anyone lose all their hair with this? Boy, it would be a little bit of good news if the chemo this time around allowed me to keep my hair.
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iamstronger im new here too. Just did my 3rd and last loading injections with faslodex. Thank God now its only once a month. But i havent lost any hair from it. I am getting more tired and i get bad bone pain but thats it.
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Welcome, Iamstronger. I have been on Faslodex treatment for three years and have had no appreciable hair loss. As many as half-a-dozen strands come off in my hands when I wash my hair, but that's it.
Everyone is a wreck when first diagnosed with mets. Stick around here and you'll learn a lot, the first two things being that you are not a statistic and that Stage IV affects everyone differently.
You will get invaluable nforimation and support from the members of this forum.
Tina
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The thing about hair loss is it makes me look to much more sick! I'm on Eribulin, so loosing hair and eye lashes, but I still have enough hair to style. It just looks thin. Other SE's aren't too bad. I was on Herceptin about 4 years ago with not too many SE's.
I'm sorry you had so join our group. Gentle hugs and tears, MaryAnne
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MaryAnne-that is exactly the reason I don't want to lose my hair. It isn't vanity, it's that I have young kids and hair loss would freak them out and then there is the pity looks from other moms. They mean well, but HATE people feeling sorry for me and my family. I know odds are I will eventually end up with a chemo where hair loss happens, but would be nice to learn to adjust to Stage IV with my hair.....
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I had my shots today, new nurse had never given them. She did know to warm them, but I showed her how my usual nurse has me stand with weight on one side, and then the other. Bless her heart, it didn't hurt that much at the time, but she got the shot in about 10 seconds instead of much longer, on both sides. I am beginning to feel very sore, and think that's going to be with me for a few days. Still it is a small price to pay, since it is keeping me stable.
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Oh, Wilsie, I hate that for you. This is hard enough, but a new nurse just makes it worse. Maybe a little walk will help. I sit on a microwaveable heating pad on the first day. It helps soften that knot. I'm with you...the discomfort is worth keeping us going and stable. Hope you feel better tomorrow.Gentle hugs, Birdlady
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Hi all,
I just got great news! I had a brain MRI and a CT scan this week! Just got the news that both were good and showed no cancer!
I just wanted to share my story in case it can help anyone else.
I was diagnosed in July 2011 with Stage IV. Xeloda worked well for almost a year! Then, Tamoxifen got me to NED and worked for another year-ish. Then I switched to Afinitor and Aromasin together. It worked great, got me to NED, but then after 6 months, my tumor markers started rising. My tumor markers have always been reliable and representative of my cancer. My onc and I decided to wait and see because I had PET scans showing NED. Also, I don't ever want to give up on a treatment too soon since the treatment options are finite. Every day a treatment works is another day here with those I love. Still the TM's rose, again and again, with one dip in there. A definite trend upward. I had a few symptoms but nothing major and all could also be side effects of my meds. My onc and I discussed options at length and he felt the cancer was "brewing". I just struggled with switching treatments as I felt that the current Afinitor and Aromasin combo must still be working somewhat for nothing to show on a PET. Even if it was losing effectiveness, I didn't want to give it up because it felt like giving up possible time. After lots of discussion of pros and cons, my onc and I decided to just ADD Faslodex to my current treatment and not to take anything away. I started Faslodex 2 weeks ago...and I hear it can take 4-6 months to start showing lower TM's.
So.....this week I had a brain MRI (just to ease my mind) and a CT scan because of some symptoms of inappropriate "fullness" at times when I eat. They were both clear!! No cancer. Now, I know these aren't as good as a PET at showing tiny cells of cancer starting, but, I am thrilled!! And SOOOOOOOO happy with our decision to stay on Afinitor and Aromasin and just ADD the Faslodex. To me, it is confirmation that the A/A combo must be still working-at least somewhat! And, I'm very very thankful to have a doctor who listens to me and treats people, not numbers. All this = more time! And, isn't that what this awful game is all about?
With this plan, I won't necessarily know which med is actually working, but I also didn't give up anything too early that might still be working to keep the cancer at bay.
Anyway, I just wanted to share my story and hope it may help someone out there wondering if it is time to switch treatments.
Praying for all of us,
Julie
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I have only had one set of Faslodex shots so far, but am also having leg pain that I think is a SE. Also, my taste buds are bad, too. Afinitor and Aromasin did that, too, though, so I haven't tasted well for 15 months now. I miss chocolate!! But, as long as the treatments are working, it's worth it! Also, I can still taste queso, so that helps!
I added Faslodex to my current A/A combo, am hoping it can lower my tumor markers and give me more time! Here's to the Fanny Pack!
Love,
Julie
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