Faslodex Girls Thread
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I am leaving this great group after 21 month,mets were found in my colon. Good luck ladies
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Tina , before you leave, may I ask if it was breast cancer found there? It's not usually where breast cancer travels.
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Damn, Tina, I'm so sorry, but wishing you lots of good treatments in your future (((hugs)))
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Tina,
I am not happy to hear this news. I am so sorry that you have heard the "P" word.Do you know your next treatment? Whatever it is, I hope that it works for 21 months, doubled!
*susan*
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Tina, I'm so sorry, and hope for you the same luck with your next treatment. Pam
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Tina,
Not the news I want to hear! I will miss my Fanny Pack Tina sis.
Hope your new treatment zaps those mets to smithereens.
Tina
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Tina, I'm sorry you're leaving us, too. I hope the next tx is successful and easy on the SEs.
I had my 5th set of shots yesterday and as usual I'm SO sleepy afterwards. I did some errands after the shots then came home, went to sleep at about 7:30 and woke up at about 10:45 this morning. It will be like that for a few days then taper off so I'm a little more energetic.
Leah
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tree3 yes it is bc mets ILC. Best of luck to all of you!
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Leah, I am sleepy from the treatment, too! I have been having the Faslodex since October, and I am always that way. I have my family and friends trained to understand this and let me sleep. :-) I am unemployed, and I don't know how you working girls do it!
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I don't get the sleepies. I don't get much of anything except I feel 20 years older all the time. I'm creaky.
Anyhow, that's how this working girl does it. I walk to the cancer center from my office then I walk back. Monday will be at a run because I'm sandwiching between a presentation and a meeting. Though there will be [excellent] lunch waiting for when I get done!
Tomorrow it will be time to start hydrating. Worked so well with the blood draw last time that I'm a convert.
Been meaning to ask -- do you all go by yourselves each time? I'm always the only single in the waiting room and infusion room. My husband hasn't seen my onc in a year.
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By myself, yes. It's mostly waiting for things to happen. The blood draw is the worst part of the routine, and I'm saving my supporters for later, when I'll need it.
My husband came to the first ones when I was diagnosed with the mets, but then someone had to because I couldn't drive. He also wanted to know what was going to happen. Now that I have my routine, I'd rather not waste anyone's time.
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I don't get sleepy either (hurts, but not tired) and I'm usually getting my shots at the end of the day, so that helps with my job.
Pajim, I always go into the oncology appointments by myself except for the "big deal" ones (initial treatment plans and the stage IV diagnosis), although my husband also made a point to arrange his days off to sit with me for each chemo infusion back when I was stage III. I never thought to look around and see what other people were doing, now I'm curious, too!
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I seldom get particularly sleepy anymore after the injections, but I do feel emotionally depleted (blood draws, Faslodex shots and quick exam by onc all in one swoop take their toll) so I indulge myself for the remainder of the afternoon and evening by generally taking it easy. My spouse accompanies me to every appointment to be there as another set of ears and to take notes, not to mention to provide moral support and an aura of normalcy. She also retrieves the car in the parking lot and brings it around to the front of the building if I'm feeling sore and tired.
I know, I know, I lucked out!
Tina
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Chiming in. I do get sleepy. Don't know really if it is from being on the "ninth" floor, the injection, feeling assaulted or all of the above. I then am more tired than usual for about three days after the injection. I go to all of my appointments alone. The last time my husband came with me was in May 2010 for the big mets talk. In fact, he hasn't even met my new [in August 2011] oncologist ever. I am not the only person alone at the infusion room by a long shot, but obviously, most of the patients who are undergoing chemo treatments have someone with them. Since I only see my oncologist every 4-5 months, most months are simple: blood draw, vitals, double injection, done.
*susan*
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My daughter goes with me. I have bloodwork, see onc, Zometa infusion, then shots. It makes for a long, tiring day. Since I take pain meds for bone mets, I don't drive. It's also over an hour to the Clinic. No wonder I get sleepy! LOL!
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We are invincible! I visited my primary care provider because the nausea, headaches, dizziness were too overwhelming. Of course she called my MO who ordered a head scan that showed nothing. I just cannot stand these awful side effects. My labs as usual were perfect.
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Had my second round of Faslodex injections this past Monday. So far the injections themselves have not been a problem...not that painful, no bruising, not much soreness etc. But this time I became tired early the evening of the shots and the next morning I experienced quite a bit of fatigue and weakness for most the day. I usually run up and down stairs at home without any problem, but the day after the shots I had to walk upstairs in slow motion and then stop at the top to catch my breath! Fortunately it gradually got better by the next day. I still can't complain much about SE's though. After only 20 days into my first Stage IV treatment protocol, I don't feel much has changed for me physically at this point, but of course emotionally and psychologically the impact has been much greater.
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Had my 51st round of Faslodex today. Injection was not painful, but had some stomach issues later. Dinner was some Pho. I just needed soup. After a good night's sleep I expect to be 100% again. I have moved my appointments later, so the waiting room and infusion room are now empty during my visits.
*susan*
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I have my first CT scan since going on Faslodex, in a week. I have only had tiredness the week of, as side effect. I am worried that it is not working for me, as my ascites has increased. If it did not work, I wonder what's next? My daughter goes with me to onc appointments, I go alone to shots and scans. It's good to have her along to ask questions I don't think of. She is my "rock" .
Wilsie
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i am new to this forum.i have stage 4 BC with mets in my thigh bone. I am taking monthly faslodex injections. I have developed a dry cough and lower back pain. If anyone has a similar experince pls tell me how they r managing it.
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Sahoonja,
It sounds like you might need a scan to see what is going on. What's your health care set-up like? Can you tell your Doctor your symptoms and get new imaging? Dry cough and lower back pain combined could be something unrelated to metastasis (allergies and arthritis, for example), but it does need investigation.
In the meantime, do you have adequate pain control medications?
Cheers,
Jennifer
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I have had lower back pain affiliated with Faslodex. It is worse during pollen season when my immune system is kicking up its heels for sure. Last summer I did a bunch of physical therapy appointments which really did help, but this is Springtime and the lower back pain is back a bit. Never had a dry cough however, so no thoughts on that one.
Anyhow, in my case, the pain did not indicate progression.
*susan*
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Hmmm...my allergies have been kicking up with Springtime pollen. I have noticed the lower back pain a bit in the last week. I would never have associated these being related. I learn something every day here. Susan, do you take Claritin or something for the allergies? Does it relieve the back pain? I don't have any cough.
Thanks "sisters" for sharing your experiences.
Sahoonja, I would talk to your doctor. My doctor encourages me to discuss any changes that I notice.
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bird,
I don't take any drugs for allergies. They aren't bad enough for that. I take advil occasionally, and that does help, but I don't like to take too many drugs. [Ironic isn't it?]
*susan*
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I had my second dose of Faslodex yesterday. Today I am feeling fine, unlike after my first dose two weeks ago. The nurse said I was probably reacting to stress last time; since I was nervous about the new medication and my husband had just gotten out of the hospital that day, stress probably played a big part in my exhaustion. Anyway, today I have already watered and trimmed my garden and done some housework. A nap appeals to me, and then I have essays to grade. Happy Mother's Day to all; have a good day tomorrow.0 -
I am new to this site and wonder if anyone has some advice for me. I was on AI's since Feb 2013 - first Arimidex and then Aromosin - both with (what I thought) were bad SE's....very, very stiff legs, joins, achy, etc. Oncologist suggested I tried Faslodex. Had my first shot in March and my second in April.... still had some side effects although looking back I think they were more minimal. BUT, my tumor markers have been rising since I started.... first 36 and this last Monday they 42. Granted, that is only a small rise but I am freaking out and worried the Faslodex isn't working. Has anyone gone off of an AI and onto Faslodex and had a temporary rise in tumor markers while your body adjusted to the new medication? I have a PET scan scheduled later this month, but in the meantime I am hoping for some reassurance.
Thank you!
Andrea
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A rise from 36 to 42 is statistically irrelevant. My markers always go up during pollen season, so a rise [or fall] by a few points this time of year seems normal for me. You have a scan scheduled, so I would encourage you not to worry. You will get confirmation one way or the other. I also think, based on my experience going from Aromasin to Faslodex, you will find that within another month that many of your joint and bone pains will lessen as the AI's leave your system.
I know. Easy to say don't worry. Another thing to pull it off!
*susan*
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Numbers for Today: Two Faslodex injections that stung more than usual. One blood draw that was comfier than usual because I requested a butterfly needle. One unremarkable five-minute visit with my oncologist, who says I'm looking good and wants to put off scans until my hip replacement is better healed. Home to a late lunch of several slices of rotisserie chicken, a handful of pita chips, several dollops of roasted red pepper hummus, five cheese straws and four cookies.
All followed by this realization: next month I will have lived with a Stage IV diagnosis on one treatment for three years.
Feeling lucky,
Tina
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Tina,
Time to throw a party! Enjoy that fifth cookie! [Though the cheese straws sound even better.] Wonderful, wonderful.
*susan*
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Tina, altogether sounds good (except for the injections that stung). Let's all party with you next month!
Leah
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