Faslodex Girls Thread
Comments
-
Sandy,
Thank you so much! I will ask my doc about the magnesium. I swear I don't know what I'd do without the input of all the ladies here. My onc told me she doesn't think Faslodex causes neuropathy/restless legs/cramps! How the heck would she know unless she's been on it? Grrr… But in my case, it may well be the Faslodex/Arimidex double whammy.
I hope you're feeling better. Glad your se's have subsided!
Rose.
0 -
Stephanie, welcome! Stage IV cancer is treated differently from early stage cancer. Much easier treatments. If your cancer is ER+ then they like to try hormonals first. Restless Legs notwithstanding, the anti-hormonal treatments have fewer side-effects.
Do you have your pathology reports? If ER+, Faslodex is a legitimate treatment to try. Do follow the "rules" in the first post. They really help.
Steelrose, I agree with Susan that you are describing RLS. There aren't a lot of treatments for it but there are a couple of new drugs. No one knows what causes it -- could just be random, but it's likely drug-related. Fun times! I hope you feel better soon.
0 -
I share the joys of RLS. I think it's the Fas. Increasing my magnesium does seem to hold it at bay. There is something called Magnesium Oil, you can buy or make yourself. I went the DIY way. You spray it on your skin. Theory is if your body needs it, it absorbes it. Supposidly, a safer way to make it available to you body but won't o.d. on it. If your body doesn't need it, it ignores it. I stay on a low carb diet so I think I have a higher need than I would on a "normal" diet. Can't vouch for the theory but works for me and I pay a price when I don't do it.
Mary
0 -
I had first loading dose yesterday. Both shots same time with two nurses. The right was extremely painful. Starting last night my hips are sore. Is this normal? Any suggestions of sleeping positions or what helps? Had horrible time trying to sleep.
0 -
Where do you buy coconut oil from?
0 -
Roberta2, do you mean magnesium oil? If so, I don't know. If you actually mean coconut oil, I found it in the haircare products section at a Giant supermarket. It's in a round jar.
Tina
0 -
Roberta2 - I just had my 4th injections this month. Some have hurt, others haven't. Don't know if it is nurse technique, needle placement, or what. I have found that the pain over the first few days after the injections has improved over time to where it is much less noticeable. I always lie down so I can fully relax the muscles and I think that helps a lot. Two other things have really helped. One is a heating pad if it is really uncomfortable. The other is to massage the area for at least a minute or two right after the shot. It helps disperse whatever it is that makes it so thick. I probably look like weird as heck rubbing both sides of my butt while I am scheduling my next appointment but it sure does help.
0 -
I too am having increased problems with restless leg. It seems to be just a dull ache that makes me constantly re-position my legs. I just started acupuncture 2 weeks ago and hope it helps over time. It has helped a lot with general achiness and fatigue. I'm definitely going to look at my last lab work for magnesium level. I am also having problems with nausea. Not every day and it doesn't last too long but it can happen several times a day. My acupuncturist suggest peppermint tea with or without ginger. The nausea is gone before I can make a cup of tea. So, I am just making some and keeping it in the refrigerator. I leave a glass out on the counter every day and sip on it throughout the day. No nausea for three days. It could be just coincidence, but I think it is really helping. I'm just using the peppermint but may try adding ginger for variety.
0 -
Hi Ladies, My drug trail failed (mets to first lungs and now liver) and yesterday I started Faslodex injections. Tolerated the injections without too much pain/discomfort but injection site sore/tender. Here to learn.Cathy
0 -
My fanny pack sisters, I received some lousy news yesterday when I picked up my CT scan report. It sounds like I have a couple very small hypoattenuating lesions in the liver, about .7 centimeters. "Both of these subtle lesions are suspicious for new metastatic disease to the liver."
Boo, hiss. I also have a couple of 3mm spots that look shady that weren't there before, but not characterized as anything yet. But that also concerns me, in that I probably have four new spots that appeared within the last nine months.
I have a call into my onc- kind of disappointed he hasn't called me yet- to discuss. I imagine I'll be leaving Faslodex behind, which really hurts because it's been so easy and seemed effective for the last three and a half years. Bones looked good (relatively) on the scan- sclerotic and mostly inactive. Skull mets are gone. So it seems that Faslodex and Xgeva really helped heal my bones but the sneaky beast has found a more hospitable home.
I've been reading up on liver mets on this site and the inspire site since I got the news, and I feel a bit better now than when I first heard. I hope my doc gives me something that will knock these out. I'd like to get back to bone only disease asap!
0 -
sandilee,
Similar to my news, though I have gotten a three month reprieve until the next scan. My oncologist and I didn't want to jump ship until I had another set of scans to confirm that the new spots were breast cancer. All about quality of life and all. It will be interesting to see what your oncologist is thinking, and I really wish that they had called you. The not knowing is really difficult. Hope you can find a way to distract yourself at least for a few moments over the weekend.
*susan*
p.s. Ah, you are in California.... you might still get a call!
0 -
Thanks for the well wishes, pajim.
Mary and Sarah, sorry to hear that you are both suffering from RLS too. I do think it may be Faslodex related. Not so sure my nausea isn't caused by my nerve damage though… it's such a joy to have so many things going on at once that you don't know what's causing what. But I'm going to give the peppermint/ginger tea a try too. Couldn't hurt!
Sandilee, boo hiss, I agree. You may be a candidate for a liver ablation if meds can't totally get rid of those nasty invaders. I had one in 2010 and my liver has been clear so far. Wishing you the best!
Rose.
0 -
susan, steelrose, et al, --So, he did call late this afternoon, and we discussed the options. Actually, his first thought was to wait and rescan in six weeks to see if there was any change. He said that the spots were so small and they usually don't change treatments for something this small, -- said they wouldn't even show up on a PET- and while the scan is suggestive, it really isn't definitive. (Which coincides with your doc, susan.) I asked about an MRI now, and again he said they would be very small. At that point, I told him that I wasn't as optimistic that they are not mets, given my tumor markers have been slowly and steadily rising for several months ( they doubled last month) and I asked if we could add something to my Faslodex (like an AI) if we were going to wait. He said that if it is mets, I will have a complete change of treatment, and then commented on how there really isn't a wrong answer (waiting or changing now) and that if we changed, he'd put me on Ibrance and an AI. At that point he said he felt that I probably did have some small progression as I've been on Faslodex a long time and my markers are up. I told him I'd rather not wait because it takes time for things to work. He agreed with that, and suggested that I come in next week, get some blood work and he'll get me started.
So it was kind of a discussion where we each gave our thoughts, but he seemed to want to lean toward what felt comfortable to me. So next week, providing all goes well with approvals of everything, (and he doesn't change his mind on my next treatment) I'll get set up for the newest drug. I've been following Romansma and others, and it seems there are more things to worry about than with Fas. But it is what it is, and I still haven't had any chemos yet, so I have that , or perhaps Affinitor, if this doesn't work. I feel in my gut that my time has run out with Faslodex, and I think that with my markers, this CT showing four new, although small, spots and generally feeling a bit more tired than usual, it's time to make a change.
susan, where was your progression? I know you said, but I don't remember. It seems like your doc's idea of rescanning to confirm is very reasonable. If I felt more ambivalent about my situation, I would have jumped at that option, but unfortunately, I don't. I really hope your scan comes back improved and you can stay on the easy Fas for awhile longer.
0 -
Sandilee,
I now have mets in my bone. Originally they were in the lining of the pleura and some chest wall lymphs, then they disappeared, The last scan shows that those are back, with the addition of new mets in the hip. I know that this is real, but the three months has given me time to finish some work projects. And time to plan my big vacation. I know what the next scan will show since my markers have also gone up dramatically.... but I don't believe that the three months will make a difference in the long run. That is a bit of wishful thinking perhaps, but it is most convenient for me to feel this way! :-)
My grade 1 version of this disease allows more time for consideration of the next step.
*susan*
p.s. I am so glad that you had a conversation with your onc tonight. And it sounds like the kind of discussion we all hope to have.
0 -
Sandilee - Sorry to hear of your progression. I too just got the news this week of liver mets! The sting of that dx is sill burning! However I was taken off my previous tx and started on Faslodex. Hoping it gives me years of no progressing too, I need to hear some positive! Good Luck with your next line of defence! I will be following this tread now so plz keep us updated.Cathy
0 -
And now for something completely different:
Is anyone else here ravenous? My appetite has been off the charts in the past several weeks.
Tina (AKA Blimpie)
0 -
Hi ladies. I am also in the Faslodex group. Is anyone here on Faslodex and an AI? I was started on this but haven't seen too many others with this combo. There was a small study that came out a few years ago that showed a benefit of combining the two (although there was a previous study a few years prior that didn't show a benefit).
I also wonder if anyone is on Faslodex and Ibrance (outside of a clinical trial)? I started treatment shortly before Ibrance was approved. My onc said that had it been approved when I was dx'd, he likely would have started me on an AI and Ibrance. He doesn't want to add it now until initial trial results of Ibrance combined with Faslodex come out.
0 -
Tina, part of week 2 I am always starving... and crave things like polenta with cheese and mashed potatoes.
JFL, welcome! I was on an AI when my initial mets were found. Based on that same study, I suspect, we kept the AI and added the Faslodex. The side effects of aromasin eventually became too much for me, based on my own belief that the drug had failed me, so we dropped it. I did just about 7 years of aromasin, and am coming to the end of my five years on Faslodex.
*susan*
0 -
Not starving here.. yet. Just got started on it tho! I've had the other problem, little appetite. Have lost substantial weight. Are there many here with liver mets? The trial drug seemed to be keeping my lung mets stable but now the liver mets.Cathy
I gained weight when on steroids though.
0 -
tryingtostaycalm- lousy news, for sure. I'm just beginning to be able to sit and be ok with it, thanks largely to this site and the wonderful support it brings.
susan- I do appreciate that my onc seems to believe that giving patients a say in the direction of their treatment helps us have some sense control over the process, and is helpful for our mental state. I know I feel a lot better knowing that the research I do might have some influence on the outcome. I also think he meant it when he said, "There is no wrong answer," in this situation, as either way to go- waiting or changing now- has its pros and cons. And by telling me that, he opened up the conversation for me to state a preference. I appreciate that, as I know he does state his opinions when he feels there's one better way.
0 -
Susan,
I am sorry to hear about your recent progression. Four years of NED with Faslodex . . . . as a newbie, that sounds amazing! What are your next treatment plans?
What kind of side effects did you have with Aromasin? I am starting to have side effects myself but have no idea whether they are caused by the Aromasin, Faslodex or just a general lack of estrogen in my body. Have numb fingers on first three fingers of both hands. And terrible arthritis in my hands - my 38-year old hands suddenly feel 88. Interestingly, it all started after I began XGeva last month. I am assuming this is a coincidence and that it is caused by the hormonal meds.
0 -
Cathy, I have mets in spine, hip, liver, lung. Been on Faslodex almost a year now, and doing fine. My mets haven't shrunk, but they haven't grown either.
0 -
Jfl...... Noticed that you were taking Taxotere...a known culprit in causing CIPN (chemotherapy induced peripheral neuropathy). I had that side effect when I was finished with one of the taxanes. Mention it to your oncologist. The arthritic type sx are common with the AIs. I found great relief with occupational therapy...the warm wax soaks and etc. Hope that this helps. Pe
0 -
Thanks for sharing terri-c! Glad your doing well!0 -
Hi, I started faslodex in November as part of trial with gdc0032. Anyone else? Also, I have only experienced dry skin ... Extremely dry skin and dry everything else. Is there a faslodex 2015 topic/post? Thank you!
0 -
This is the active Faslodex thread. Welcome to the Fanny Pack!
*susan*
0 -
Hi! Just got back from a glorious trip seeing my new grandson! Better therapy than radiation I can tell you that much! Its so nice to see life on the waxing side full of discovery...even at his very young age! Thanks Myra and Susan and everyone for just being there. I am starting a support group for Stage 4 CA pts. in a week or so. All kinds of CA but I'm sure we will relate to one another. Best support is peer support!
0 -
Valerie
Congrats on your new grandson. That I am sure the best med of all!Vielka - Welcome! I'm new to Faslodex and this page too but used to the dry everything from Letrozole (Femara).
Cathy
0 -
The dry everything is pretty common I believe. Dry skin, etc. is a symptom of menopause, and lack of estrogen. I joke to my husband that I have the estrogen levels of a 92-yr old women in my 55-yr old body. These drugs put us into super-menopause which women who age without this disease get to gradually over time. I have found that I am less dry on Faslodex than I was on Aromasin. My skin doesn't itch as much during the winter which is my only barometer for these kinds of things.
SuperMenopause-*susan*
0 -
I not only found I have dry skin but nails crack and split unless if make a ritual of giving them moisture. I also started taking biotin (in vitamin section) which is for healthy skin, nails and hair. Will find out soon if it works as they say but if your interested google it and there are many testimonials for it. Even Dr. Oz has given it the stamp of approval.Cathy
0
