Faslodex Girls Thread
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Just commented on the other thread, Kaption, but YaY for good/stable!!!!!!!!!!!
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M, I do not think that the symptoms mean that Faslodex has stopped working, but they could be a side effect of the medication. Please call your oncologist's office and report your new symptoms to see if he or she thinks the issues are something to be looked into. It could be nothing, but it is always better to call and ask than to just suffer
Lynne
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Kaption, congratulations...stable is a good thing!
Faslodex was so easy for me to take, except the sciatica and occasional bruising. I just wish it had been tougher against the cancer and stablized it.
So glad you got good news and wishing you good times ahead, Stephanie
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Kaption, Stable is indeed worthy of a celebration! Whew
M, I had a racing heart last time I had Fas and Zometa. MO thinks it is SE of Zometa. Lasted 5-6 days and then settled down. I agree with Lynne though, check it out if it continues. Are you having Zometa as well?
Lynne....I posted on Bone mets asking about you. How are you?
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Kaption, Hooray for stable! Hope the rads lessened the pain you were having.
Welcome Maedchen! Hope you get some answers on your breathing problems. Or better still, that it is an se that goes away by itself. Are you taking Ibrance too, or Fas alone?
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M, when you say "breathing problems" do you mean while you are just sitting? Or when you walking or more active? I'm on Faslodex only (and xgeva) and am short of breath when walking, but assumed it is just because I've been getting so little exercise.
The ground glass things sounds scary. I haven't seen that term.
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M, I have lots of ground glass opacity in my lungs and mine is a result of radiation. On a scan it looks like hazy little white dots or pockets. It is really a partial filling of air spaces in the lungs and looks like ground glass, thus the name. I've had it over 5 years now and I would say it has not interfered with my breathing unless I over do. I wouldn't worry about it too much, but of course you may want to talk to your RO but it sounds like they are on top of it. You have lung mets too is that correct?
Had my top nurses today for Zometa and Fas shots so all went smoothly. YAY!
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I had a great Fas shot nurse too. She said always waits for the alcohol to dry and that makes the entry less painful- no sting. I hadn't heard that before and it did help!
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I had the follow up meeting and treatment with MO. She was pleased with my stable PET scan, but the scan noted an increase uptake on the right femoral neck. I have zero pain there, so I didn't even think about it. She sent me to immediately have an X-ray, just as a precaution, to be sure there is not damage that could lead to a future break. She said something I had never heard- that there are different kinds of bone mets some are more invasive than others. I don't expect this to be a problem, but she is just being careful. I have the final rads follow up with my RO tomorrow, so he should be able to give me the results.
She is already talking about "next treatment" being Xeloda and something else. But, I don't think that will be soon. She said KU has a trial with xeloda and differing dosages. I'm not in any hurry to change. I just got the feeling she was expecting more improvement. At this point, I'm happy with stable!
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Fingers crossed for you, Kaption!
Tina
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Maedchen - I had groundglass opacity noted on one lung scan. The radiologist noted it was consistent with inflammation or infection. By the next scan it had disappeared. So may be nothing worrisome.
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Kaption, Hope the x-ray turns out to be nothing. . . nice results otherwise!
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Hello. ladies. I am asking on behalf of my mom. My mom has been on faslodex/zometa combo for 18 months. Since past few months she has developed joint pain in ankles and slightly in knees as well. Oncologist has not said anything about it and didn`t seem to be alarmed. Next scan is in a few weeks but we are wondering whether this could be a side effect from meds, progression from disease or arthritis? She has not any other complaints other than joint pain. Does anyone have similar symptoms or experience? Thank you.
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Mymom, progression would be extremely rare in those areas, but joint pain is common with Faslodex due to the extended loss of estrogen. It's probably some existing arthritis or degenerative disease made more prominent by the meds, especially Faslodex. I personally use a curcumin supplement to help with the inflammation that causes joint pain. There are meds that can help too if it's bad enough to impact her quality of life. Her onc needs to evaluate that. Exercise is also very important. It sounds counterintuitive when we hurt and have a lot of fatigue on top of it, but depending on her specific situation, exercise -- even walking -- can greatly help the joint pain.
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Pajim and others- the X-ray showed a bit of invasive issue, but just something to keep an eye on for now. My RO said he can help with rads if needed. That (femoral neck) is one area that they will radiated before there is pain to keep it from breaking. So, for now, all is good!!
I hope everyone has a lovely weekend.
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I joined the Falsodex club today. While waiting for them to get the injections ready I popped on here to quickly read the tips at the top- and boy am I glad I did!!! The injections weren't nearly as painful as I thought and hopefully that's the norm for me.
I came home, laid on the couch and passed out for 2 1/2 hours!! Woke up drenched in sweat and very sorry I slept through my scheduled pain meds. After taking my medication, I feel much better but very tired still.
Fingers crossed that I see some benefit soon
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Sarah- yes, hoping for a good long run on Faslodex for you!!
Very funny screen name! Welcome!
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Welcome Sarah!
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On my last visit to the oncologist, I noticed there was no check on my lab order for CA 27.29, which my doctor has been measuring every month for five years. When I asked the nurse, she said my doctor had stopped ordering tumor markers. She implied that this was across the board. I wonder if this is because of insurance payment issues or the unreliability of markers in many patients. Mine have always been in the normal range, even when I had active mets.
What are your thoughts? Experiences?
Tina
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Hi Tina,
I don't think it's the insurance companies guiding this decision.
Best standard practices for oncologists say not to do them, but it's left to each doctor's discretion - some docs do, some don't.
If your tumor markers have never correlated to mets activity for you, no real reason to keep doing something that isn't working.
I would, as one patient to another, strongly argue for tumor markers in those with lobular mets whose activity can't be tracked by quarterly scans.
I've also come to believe in biopsy of new mets or new activity whose tumor status might have changed hormonal status and/or HER2 status. What is found might change a treatment plan...and cancer continually morphs over time and even variation within one tumor as well as new site of mets.
It's complicated!
Would enjoy hearing from others.
love & light, Stephanie
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Tina, as long as yours have always been in the normal range, there's probably no need to do them monthly. While I still get them done locally each month when I get my Faslodex shots, UCLA seems to be putting much less emphasis on them these days. Mine are much higher than yours and have been bouncing around quite a bit since I've been on Ibrance. When I last saw my UCLA onc (who I see every 3 mos.), she smilingly waved off the little chart I'd brought along, saying she didn't care about them and was only concerned if they literally doubled in a one month period. I figured it was due to Ibrance making TMs bounce around more than other meds seem to, but it was comforting to me to be told not to even worry about them going forward unless they double. So it sort of sounds like there's a newer train of thought about doing them for us.
Stephanie! Great to see you posting this a.m.!!!!!! And interesting thought about TMs being more important for ILC mbc.
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Thanks, Stephanie and Deanna. The "doubling" criterion seems to be popular. A while ago when I expressed concern to my onc about my steadily rising levels of LDH on my blood tests, which have long been above the high point in the normal range, he assured me there was no reason for concern unless they doubled.
Tina
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Tina, My CA15-3 has never been outside of normal, even when 1st dx'd with many bone mets. CEA is slightly out of normal, but not too crazy. My mo & I decided to take TMs every 6 months, same as scans, but on an alternate cycle, so I have either scan or TMs every 3 months.
Stephanie, When I asked my mo what we would do at next progression, she said if mets returned to bones we would do a biopsy to see if cancer properties had changed. This was the first time I had heard this thinking, vs just go on to the next tx, so I think you are spot on as usual.
Frankenboobz/Sara, I'm a little late, but welcome all the same. How are you feeling? Have you had your 2nd loading dose?
Kaption, How are you doing? Are you done with rads? Hope you are recovering well..
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Hi jobur,
Nice to hear from you.
Rads finished about 6 weeks ago. We are spending the month in FL, trying to soak in some warmth. It's beautiful here.
My new thing, which sent me to the ER here, is a numb chin- the right side and again at my temple. MO at home told me to go in. They did a CT scan and didn't see anything scary. (Also, no bad heart or stroke signs). So, got released. That was a week ago and everything is the same. Maybe a brain MRI when I get home? Or maybe this is just something my poor spine is doing to be now.
Otherwise, I'm fine. Enjoying my month off. Thanks for asking.
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Dear ladies. Is there anyone who has had joint pain from faslodex? Whatkind of jointpain have you experienced? I posted couple of weeks ago that my mom has developed some ankle and knee pain. She had a CT scan 2 weeks ago, which showed stability. Tumour markers had creeped up from 40 to 80 since this summer. MO decided to continue with faslodex (she has been on it for 1,5 years now) and possible switch to chemo from new year. The arthritis, though, seems to get worse. It is in her fingers and travels to shoulder as well. Is this situation common to anyone? NSAID painkillers don`t seem to work. Thank you for your answer.
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I've been on Faslodex since June. I do have some hip pain that I don't believe is the cancer- it's a sharp, quick pain. I had some osteoarthritis in that area before the stage 4 dx, so I think maybe Faslodex has made that a little worse. I believe others have posted about joint pain from both/either Faslodex or Xgeva.
It does get hard to distinguish between cancer, se, and just getting older!!
I hope your mom can find some relief soon. I find making sure I don't sit too much helps me. But, I'm sure everyone is different.
I'm glad to hear she has been stable for over a year. I hope I get a year out of it.
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I too have had increased joint pain since starting Faslodex. For me it has been hips and wrists. The wrist pain may just be due to aging, but the hip pain almost always comes with the shots and subsides in the weeks after. Many ladies on this forum swear by curcumin/turmeric for joint pain. I know others with joint pain who use a glucosamine/chondroitin product. Both of these are OTC. Has she tried acetaminophen (Tylenol) as well as NASIDs? Hope she finds something that helps. Best wishes to you and your mom.
Kap, You are so right about it being hard to distinguish between normal aging, cancer, and se's. I got my stage IV dx in the middle of menopause and have found some things I blamed on tx are just "normal" after menopause. How is your numb chin? Fingers crossed it goes away all by itself.
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I'm creaky. That would be creeeeek. I'm younger, but I think part of it comes from a long-term lack of estrogen in the joints. The longer you block it the worse the joints feel.
It's unlikely that cancer is causing joint pain. It's rare to see breast cancer in the arms or legs. Almost 100% this is a side-effect of Faslodex or Femara (if she's on that too).
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jobur,
Chin is still numb! It's so strange. We away from home and I see my MO December 1. I'm predicting am MRI.
Thanks for asking.
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What Pam said!
Tina
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