Faslodex Girls Thread
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JoynerL, after first shot the pain was tolerable and it bettered with time. As per your suggestion, I was also trying to find if it was muscular pain. My mom had second shot of 500 mg a day before yesterday and the day & yesterday she was fine in terms of pain. But today is really bad day for her. She is completely down with whole back pain and leg pain. Our onc did not suggest about claritin. She is taking tramadol dosage to tolerate with pain.
My mom did not complain anything related to medicine injection. As far I know she was happy with the way he injected the medicine. However I will try to find out if it did not hit the nerve. Thank you so much for your words. I will go through the string and read more about it.
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Lalit, we didn't learn about the Claritin/loratadine regimen from our doctors but rather online from others who are taking Faslodex. My own onc had never heard of it for Faslodex but does recommend it for another drug (can't remember which...starts with an "L"). He was interested that we had found this to be helpful and made a note to pass it along to others.
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Lupron maybe?
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Yes, that's exactly what it was, Daniel. Thanks. It was the only drug for which they had heard of prescribing the Claritin regimen.
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Lynne, out of curiosity, are you going to take Tamoxifen as a monotherapy or are they adding some different targeted therapy to it?
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Thanks JoynerL, I will surely discuss claritin & faslodex combination with our ONC. Hope this work for my mom. I will update it further here.
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Update on the reduced Faslodex dose for me: About a month ago I posted that my joints were giving me so much grief that I begged my oncologist to stop the Faslodex. He compromised by skipping one month so I could go on vacation feeling pretty normal. When I got back he cut the shots to one only. He said we could keep doing that until the tx fails.
When I said, I hope it works, he said that he thought it would, and the reason for that is the dosing is the same for me at 130 lbs as it would be for him at his weight (which I estimate to be about twice as much as mine). He thinks I might have been getting more Faslodex than I needed.
Something to consider, if you are having bad side effects.
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Daniel, I apologize for not answering your question earlier. I have been busy with visiting family as well as traveling. I am taking Tamoxifen as a monotherapy. I have to admit that It feels like a step down from Faslodex and Ibrance, but since Arimidex alone worked for me for 13 months, I am hoping that Tamoxifen works that long or longer.
Lynne
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All,
Who'd have thought it? Of course, I had hoped, but back then lasting this long and functioning well on one treatment was unimaginable.
Seven summers ago, I was diagnosed with lung metastases many years after having had surgeries ten years apart for Stage I cancer in both breasts. My savvy oncologist recommended a relatively new treatment that blocks estrogen receptors.
At the time, I thought I was a goner, that the disease had finally cornered me and I would be on a downward slide into illness and death.
How wrong I was. And how relieved I am to write that.
Here I am. And here I hope to stay.
Bottoms up, fellow Fannies!
Tina
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OH, Tina...what fabulous news! That gives us all such hope! Thanks, and have another seven....and then another.....and so on....
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Lalit, how's your mom?
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Tina, WOOHOO for seven years! That is wonderful. That is a heck of a lot of injections. You have found yourmagic bullet, and I hope that you never have to change to another treatment. WOOHOO!
Hugs and prayers from, Lynne
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JoynerL, my mom is not well and she is facing suddenly new set of challenges. A day before second shot of faslodex, she was having 1 unit of blood transfusion. After that while going to washroom in hospital, she had sudden shortness of breath and she was unable to get the breath. Her pulse reached till 150. Luckily she was in hospital so situation was controlled quickly but she was kept in CCU in observation for 2 days. After 2 days she bettered and had second shot of faslodex. Our onc suggested to take advise from cardiologist. She had chest CT scan and we had found that her left lung is not functioning properly. (CT scan read: There is mild left side pleural effusion with collapse consolidation of underlying left lower lobe noted). She has been breathing heavily and not able to sleep in lie down position. Since few days she is not able to walk few steps or climb 2 stairs on the same level. Her movement is restricted and we are helping her for regular activities which she has been doing properly few weeks back. We had consulted pulmonologist, knowing that her lungs need immediate attention.
Pulmonologist outlined that she is facing current situation due to blocking in left consolidation region of lungs. Although he said that there is pleural effusion but it is very mild and not tappable. The pulmonologist is treating her first with antibiotics and see if it is due to some bacterial infection or case of pneumonia. Later if required he will do bronchoscopy to check if the issue in consolidation region is malignant or some kind of infection. Apart from that my mom is having low blood pressure. And recently she is complaining of heat in her body. There are multiple issues which she is dealing. But at present we are more concerned about her shortness of breath and issue in lung as it really knocked her down. We are worried.
Thank you so much for your concern. I will welcome any comment or suggestion which keep us up in this difficult time.
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Lynne, no worries. Thank you for taking the time to answer
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Lalit, I wish that I had good suggestions to offer, but this is outside of my own experience or knowledge. I'll be praying for your mom's speedy improvement. Again, she's so very lucky to have you on her side.
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Thanks JoynerL for your kind words and prayers. Hope that we find the correct diagnose of this issue.
I hope to get some advise/suggestion from this forum.
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Hi All,
I have a question about Faslodex side effects. I have been experiencing increased pain in my right hip and have been concerned that the Faslodex is failing (I have mets in my right hip). However, joint/bone pain is a reported side effect of the drug. Have any of you experienced increased joint pain? Do you think it’s possible to have pain only on one side?
I’m not due to see my MO until September so trying to figure out if I need to email him. Unfortunately, my last CT only captured the chest - it was an urgent CT related to the pneumonia I managed to get at the tail end of my vacation. Sigh....
Any advice would be appreciated.
Pat.
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Pat, I am decidedly stiffer all around, but I attribute that as well to being 72 (though very active). I must say that I feel as though I've gotten much stiffer in the 18 mo I've been on Ibrance/Faslodex.
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LOL. Yes, we’re all getting a bit stiffer but it’s localized pain in my case. I do recall that chemo did a real number on my joints when I was first diagnosed but at 56 I feel I’m a bit too young for a hip replacement!
Thanks. Pat.
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NineTwelve, I love how your doctor thinks. I find it interesting that doctors prescribe these drugs how they see fit. Sounds like some doctors saying it's ok to take letrozole every other day if you have bad side effects. It's a shame that their hasn't been studies to really see how much we need rather than just testing to see if the dose is effective.
My doctor has his own way of thinking too. I am taking combo Fulvestrant and Letrozole. search for both and Omicsonline.org
This small study showed its helpful. Yes I took Ibrance too for a year until my tumor markers were stable. He said it was not worth the side effects and he can always have me take it again later if my tumor markers rise again. Talk about taking a drug vacation.
My side effects are minimal but lately I've been more sore than usual. I hope it is not a sign of things to come. When I was on letrozole for 3 years before I was diagnosed with fibromyalgia cause of all my aches and pains. Been on it a year now with no problems till just now. Is that arthritis in my fingers???
Gail
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Hay Tina!
I saw your wonderful, inspiring news today! So much hope in it for all! May there be 100x7 years for you and more! Wonderful, amazing news!
Rainbow
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lailit- I am so sorry to hear about your mom. I too had a pleural effusion that the pulmonologist had to drain. It took a few months but when the medicine started working it went away. I hope this also happens for your mom.
saddiesservant- I also have mets in my hip and experience joint aches. I had ct scan and everything looked good so I try to envision the medicine killing the Mets and of course I'm going to have stiffness because I'm sure that they did some damage before we found them. Ibuprofen usually helps me. Try taking Claritin two days before the day of and two days after. Gii
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Thanks Holmes.
This is more than an ache - it's been going on for over a month, getting progressively worse to the point that, at times, I'm limping but MO has ordered a CT to see what's up. I do have the typical aches and pains after the Faslodex shots but have never found them particularly concerning. Just one of the joys of treatment!
I appreciate the support. Cheers. Pat
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Sadiesservant, the first question my MO asks me every time I see him is, "are you in any pain." Please do let your doctor know about your hip pain. If it's nothing, you will be glad you asked, and if it's something, better to know about it so the problem can be addressed.
Tina, congratulations on your 7 years on Faslodex!
Everyone with joint problems, these things were helpful for me: acupuncture, stretching and arthritis-specific exercises, visit to a naturopath (who prescribed vitamin D, fish oil, B-12, folate, and melatonin), going dairy-free, any period of sobriety also helps, but I like my beer, so that is a quandary.
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That's too funny. I always remember a comment that Z made on one of the threads when we were discussing giving up wine. Her response... "I would rather die." I can definitely relate... I like my grapes crushed and in a glass...
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Hi Y'all,
I'm starting on Faslodex later this week and will start taking Claritin a couple of days before and after as suggested in this forum! I followed the same protocol whenever I got a Neulasta patch with my last chemo and had no problems with pain. Are cold packs a good idea for the injection site if I have trouble sitting? Are there other side effects like nausea to be aware of? Should I start taking anti-nausea meds beforehand? Faslodex 101!
Thanks in advance for the advice!
Katty
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Katysmith,
Welcome to the Fanny Pack! Here's my advice: Follow the tips at the top of this thread. Try cold packs if they help.I was advised against heat for the first several days because it interferes with proper absorption. I had a bit of nausea for the first few months--that was it. I had an Rx from my oncologist for an anti-nausea medication, but never took it. A few ginger capsules did the trick for me. Get the injections and see how you react. Whatever side effects may occur, keep in mind that your body will grow accustomed to the medication over time.
Bottoms up, hon!
Tina
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Pat, how's that pain? Have you had the CT yet? Has anyone heard from Z lately? I know that she has been on the immunotherapy sites, but I haven't checked.
Katy, it sounds as though you've been doing your homework! Are you aware of the suggestions for standing on one foot, crossing the other behind the first, etc? It all helps. I have found that walking briskly immediately afterward and twitching my fanny as I walk seems to help distribute the medication. My shots caused pain for a day or so early on, but now they do not. I don't know whether my current nurse is so much better than others (a distinct possibility) or whether my body has adapted. I had a different nurse for the first 3 mo of the treatment but have had the same wonderful one since (on cycle 19). I'm assuming that you know about the obvious warmed shots and very slow injection.
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Hey, I'm just glad that I have great padding in my keister! I knew it would come in handy!
I keep ginger in various forms on hand, and I do have plenty of Ondasetron, as well, so I should stay ahead of any possible nausea. I've always managed to stay ahead of side effects through various treatments and am hoping to dodge anything serious this time, too.
Bottoms up, indeed - I'm sure the nurses will get a laugh out of my 40 year old Iris tattoo - and thanks, Tina!
Katty
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Joyner, thank you for your advice. So they give the injections (there are more than one?) while I'm standing? You're saying to take the weight off the side where I will be getting the injection, by crossing my foot behind the other? Gotcha. I've been having ongoing trouble with sciatica on the left side for the past few months, so I think I'll start with the right side. I'm assuming they alternate sides? I will remind them to warm the shots. They've always done that for my Xgeva and injected it slowly into my belly fat. Hooray for belly fat!
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