Faslodex Girls Thread
Comments
-
It looks like I'm going to have to leave this Faslodex thread. I had 4 cycles of Ibrance/Faslodex and unfortunately my monthly Ca 15-3 blood draws showed increasing #'s. I went from 174 to 202 to 327 to 601. So my onc is taking me off of this Ibrance/Faslodex tx and wants me to go on Xeloda. Next week I 'll have a bone scan and a CT scan to see where and what any possible progression is happening. This is disappointing!!
0 -
Proparent,
I hope you and your mo will wait until after the scans to change tx. 4 months may not be long enough to know if this treatment is working for you, and tumor markers don't seem to be very reliable for those on Ibrance. I hope your scans give you a happy surprise. I have seen others on this forum who were ready to change tx based on rising TMs and changed their minds after scans. Hope this will be the case for you too.
I'm a Minnesota girl too. Transplanted myself to WI 30 years ago.
0 -
Proparent,
I agree with jobur. I hope your MO won't make a decision until after the scans. Four months is a very short time to see how a treatment is working.
0 -
I'll wait for the scan results before I panic! Thanks for the encouragement!
0 -
Proparent, I agree. You and your onc should not make decisions without scans. I hope yours turn out to be great and there's no need to switch..
0 -
Hot News: I received my injections Thursday and had night sweats that awakened me on Sunday and Monday night.
I often have several small flashes on the days just before I'm due for new shots, but this overall soaking at night is new.
Thoughts?
Tina
0 -
None from me. After nearly four years I'm starting to get night sweats. Never had them before. (Hot flashes, sure) Maybe 'things' just change over time? We think they'll always be the same but our bodies disagree?
I can't even blame it on the wine. In fact, the night sweats are better if I drink wine. Sigh.
How's the hip treating you? All good?
0 -
I'm with the others' who left Ibrance / Faslodex secondary to increasing TM's. Mine were jumping 200 points a month. I was switched to Xeloda, and I could not tolerate it. Horrible side-effects. Did a scan and realized the Ibrance combo was working in spite of the increasing TM's. I start back on the I/F treatment tomorrow. Thank goodness
0 -
Mel26 that's my story my once took me off Ibrance/faslodex based on TM rising put me on Xeloda which took me to the ER today after trying unsuccessfully to get my onco on the line. I'm moving to Naples, Fl soon and will start seeing a new Med oncóloga so I'm just going to stop the Xeloda and see what the new guy or gal has to offer, but definitely no more Xeloda!
Aurora
0 -
Pam. the hip is good. Everything else, well--I really should not complain. The night sweats are the least of my concerns, My back hurts. My feet hurt. I'm gaining weight with frightening speed. The shorter daylight hours are doing their usual number on my mood. And I'm anxious about every conceivable aspect of our future.
Other than that, I'm fine.
Tina
0 -
I am coming up on 24 months of treatment with the fas shots and I have also noticed the flashes early in the days after the shots - used to be the last few days before the shots wore off - also my hip pain is finally gone after over a year but now I have foot pain in one foot only) and I have shortness of breath big time towards the end of the cycle but tm's are only slightly elevated - I am due for ct and bloodwork first week of January and am hopeful things are still pretty stable - btw, I am only on Faslodex not Ibrance - it still isn't approved in Canada - I thought this thread was faslodex but notice some here are on both. A little confusing sometimes.
0 -
208sandy,
I'm Faslodex only. Hope I can get 24 months from it. I've been on it since last June. I noticed recently I do not have hot flashes like I did when I started it.
0 -
Aurora, I'm sorry you had to go to the ER to get the attention you needed. I have been so ill for 12 days, 5 of them off Xeloda. Today was the first day I didn't wake up with nausea and being out of it. Still with body aches. I did have blood in my urine for the first time this morning. I start today receiving IV fluids with home health. I won't go on Xeloda again.....too toxic for me.
Good luck with your move and finding a good oncologist.
Mel
0 -
Sandy, I was on Faslodex alone (well, with Letrozole) for almost 3 years. My TMs went up and scans got worse so now I take those plus Ibrance. But I hang around on this thread anyway.
My days are numbered on this cocktail -- TMs went down, plateaued, and are starting to rise again. I see scans in my future.
Tina, I hear you. I have work to distract me from the bad ankle, weight gain, sigh. March is my "the world is going to end" month. Are you really anxious? In the sense of ask the MD for help anxious? You're not far away from me -- wanna get together? After Christmas I'm home for four months.
0 -
Pajim, Don't count your days on this tx yet. As you probably know, many see TMs rise with Ibrance even when scans show it is working. You and Tina should get together! Seems like you are the old timers on this thread.
Sandy, you are getting there too, 24 months is great! What province do you live in? I hear there are some clinical trials for Ibrance in Canada.
I've taken venlafaxine for flashes (and a little antidepressant can't hurt) almost since I started Fas. It has helped with daytime flashes, but still get night sweats. Worse the 2 weeks before shot time, better after.
Hi Aurora, good to see you around again.
Kap, Are you back home yet? Getting that numb chin checked out?
A wise woman recently told me, if you're over 50 and something doesn't hurt you must be dead.
0 -
I started faslodex in February 2014, and am still on Fas and Xgeva only. My Onc gave up on my TM, since it started rising in 2013, but all scans are clear or stable. I do not have hot flash. But night sweat is a problem sometimes. My Fas shots have been scheduled thru April next year. My goal is to follow Tina's record on Fas.
0 -
Hi jobur,
Yes, we got home Nov. 30 and my MRI for numb chin is Monday afternoon. We'll see...
Thanks for asking.
0 -
Hello Faslodex Girls.
I have been on Faslodex since September and also Ibrance. Do any of you taking Faslodex have increased liver enzymes? My all phos has come down in the completely normal range but my AST and ALT keep rising. MO thinks it's a side effect of the Faslodex. Wondered if anyone has had this happen. When I had my PET scan in September no evidence of anything but bone mets but tamoxifen for 7 years gave me a fatty liver so I'm wondering if anyone has had to reduce the 500 mg to 250 and if it is still working. Freaking out as usual since I just completed my third round of Ibrance as well. Any suggestions would be so helpful. Thank you all for your loving support to me and the rest of the newbies.
Anit
0 -
Anita,
Yes Faslodex can increase liver enzymes, however, the blood panel is often compared to ALP, total protein and bilirubin as well to get a total picture. My enzymes have been high for many years. My MO told me a long time ago that our bodies are amazing at handling the drugs we take and the liver takes a hit no doubt. As far as 500 vs 250. I've had 500mg for years and have had to switch to 250 recently due to severe migraines and I'm doing well. Hold tight, and talk to your MO next time you go in about your concerns. Are you near an NCI cancer center? Linda
0 -
Now I'm in the anxiety zone. Yesterday afternoon was a one hour MRI of my head and cervical spine. Tech said it could be a day or TWO before my MO gets results. Hoping for today.
I have numb right side chin and gums numbness and right temple numbness all the way to the outside of my eye. I do have some sinus issues going on, but not severe enough to cause all this-I don't think. So, my self diagnosis choices are:super sinus infection only, lesion on jaw, lesion in brain, or a combination of all of those. *sigh*.
0 -
Thank you Lindalou for the information. I was so scared due to the fact that they keep going up and my MO from Dana Farber talked to my husband two weeks ago and said the numbers didn't alarm him, but after two weeks they jumped much more. I guess I will discuss this with both of my MOs. I am new at this and I really don't understand all of the issues with these tests at all. Thank you for your help. That makes me feel a little better. My Alk Phos. is coming down so fast which is a good thing. I don't live near a NCI, but Dana Farber is about four hours so I can go there once I make another appointment. I'm glad to hear that you are doing good. I wasn't sure if they drop the dose and if it will still do the same thing, for now I feel so much better with almost no pain since i started the Faslodex and Ibrance. I have such minimal SE. Thanks again for getting back to me, I'm new in the game and I just can't deal with the fears everytime I have blood work. My Primary has given me some new anti anxiety pills to cope with this, so maybe this will all help. Thanks you again and keep in touch.
Kaption, I hope your MRI turns out to be nothing but a sinus infection. Keep us posted on your progress. We are always thinking the worse case, but it could be just some medication issues. Keep me posted. I'm thinking about you and wishing you well!!!! ((Hugs To All)))
Anita
0 -
Kaption, I can sure understand your anxiety, a numb face is scary stuff. Still hoping for some explanation that includes B9! Hope you get your results soon, it must be so hard to wait when you are having those symptoms.
Anita, The main thing to concentrate on is that you are feeling better since starting tx. IMO that is the most important thing. I don't mean to trivialize your concerns about liver numbers, but try not to let them worry you too much. Do discuss them with your mos and get all your questions answered, but concentrate on feeling well and living your life. Hope those anti-anxiety meds help. This is a tough dx and it takes time to accept. Are you getting zometa or denosumab (Xgeva)? Sending a hug back to you!
0 -
Thanks Jobur. I am thankful that I'm feeling good that is for sure. I guess I just have to put them out of my mind and let the professionals do what they do best!! You are right, this is a tough dx to accept and I just need to give it some time. I don't take Zometa, but I do get shots once a month and one is Xgeva. Thank you for your advice, I'm trying my hardest to get past the big hump!!! ((HUGS)) to you too. Thank you again,
Anita
0 -
Hi everyone,
I have been on Faslodex since August. I have my injections laying down getting both shots at the same time, it works well for me. It was going well with no side effects of note until about a month ago. I started getting the worst shooting pains in my lower legs/shins. Left it for a few weeks to see if things would improve. Finally had a whole body bone scan 2 weeks ago, and it was the best scan result I have ever had. The first with no progression, mostly stable, and even some regression. After many chemo failures, and only being on this for 4 months, I am rather impressed, and hope it continues
I'm ok dealing with the pain if this is the outcome. I noticed some of you have had your tumour markers spike, strangely mine have not changed since the day I was dxd, we only do them now for curiosity sake. Hoping for a good run on Faslodex
0 -
Freya- great scan results! So happy for you.
I'm glad you mentioned they shooting pain. The last couple of months I've had an occasional, short,sharp pain hit the top of my left foot. I also, sometimes feel like something is wrapped around my left ankle. Maybe that is a Faslodex se.
Congrats on the great response!!!
0 -
Hi Kaption, and thanks
I am still trying to sort out something that will work on the pain. It is the type that takes you from sound asleep to hanging from the ceiling by your finger and toe nails in 2.5 seconds. Mine is mostly in the shins, yours is in the foot, a SE seems most likely. My MO does not have a lot of experience with this drug, but she is thinking the same.
0 -
Kaption, do you have the results of your MRI yet?
Thinking of you
0 -
Thank you for asking Freya. The MRI was "unremarkable " in that it did not show brain mets or any NEW skull or neck mets. The kind of scary thing it is showed is a sign of ischemia on the numb right temple. I may have had a mild stroke-at some point. It may or may not explain the current numbness there. It does not explain the numb chin.
Next step is my regular PET/CT this Thursday to see if there is more info there. (MO says MRI is best for brain mets though. ). I will see my ENT on the 29th because I am having sinus issues- but again not likely to explain my numbness. Most frustrating is I can't get into see a neurologist until March 2, even with a referral.
It's all kind of scary-even though they don't believe it's cancer. In fact, I just woke up (literally) from a nightmare about it.
I'm trying to stay active and happy and distracted. I'll let you know if I learn anything new.
Happy holidays to all!!!
0 -
Kaption, Glad to hear no new mets found on the MRI. This is one of those frustrating times when we hope for a negative (good) scan, but at the same time need an answer as to what is going on. I'm sure it is scary, but you have a great attitude! Keep trying to stay happy and busy. How are you feeling other than the numb face? I hope the PET/CT on Thursday will confirm all is stable and you are able to get your results soon. Happy holidays to you too.
0 -
Great news on your MRI, Kaption! I'll bet you never were so happy to be termed "unremarkable!" Hopefully your PET/CT will be equally unremarkable, with the exception of improvement. And interesting about the observed ischemia. Keep us posted on anything further you find out. Do you have high blood pressure or family hx or any other reason to believe you may have had a mild stroke at some point?
0
