Faslodex Girls Thread
Comments
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Hon i am currently recouperating from lung surgery. It wasnt breast cancer it was a primary. They took the top lobe of my right lung off and also mass lymph nodes from the chest. My surgery was 9/23 and im still in alot of pain. Just a word tothe wise try everything else available before surgery. I wish i had said no.
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just started shots on Tuesday and still nauseated on Saturday. Is that normal? Thanks to your tips, I had no issues with the shots!
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Gina,
I have a memory of being mildly nauseated for a few days after the first injections, but it dissipated after several months. I chewed soft ginger candies, took ginger capsules and never used the Compazine prescribed by my oncologist.
Tina
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Thanks, Tina, I'll give the ginger a try...
Gina
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Hi Gina, welcome to the group! I haven't had nausea. The immediate side effects I DID have faded after a few months. It was as if my body figured out how to process.
Hopefully your nausea won't happen next time.
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I don't post on this thread often, but I wanted to share a tip with all of you. I ask the nurse for the syringes, in stead of holding them I put one under each arm like a thermometer. Voila, they warm up to body temperature very quickly. The nurses have even commented about how much easier they are to push in because they are so warm. Hope this helps someone. I have been on Faslodex now for a year. After 3 mos, I was NED and I am still holding there. I am hoping to stay a member of the fanny pack for years. Best wishes to all.
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It's interesting that there is not a word in the package insert about warming the syringes before injection, even after all the time Faslodex has been on the market. By now the folks at Astra Zeneca should have caught on to the fact that warming the syringes makes it easier on the nurses, not to mention the patient. I can't imagine adding a new sentence to a package insert would present much of a challenge to a major pharmaceutical manufacturer. Of course even then the administrator of the injection would have to actually read the insert. Many clearly do not, as evidenced by frequent lack of compliance with the instructions for slow injection discussed in this thread.
Tina
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Hello everyone. I don't post very often but follow quite a bit. Just wanted to chime in here and post my experience. I am in the Palbociclib plus Fulvestrant (Faslodex) trial and have been for exactly a year this month. When I first started I experienced severe back aches to the point I was unable to do much of anything for three to four days. Mentioned to my Oncologist and was told its not a symptom. It happened again the next month. I noticed that the nurses were only warming up syringes under their arms. The next month I had a different nurse and she used the heating pad for ten minutes or so. No back ache! After that I insisted they keep doing it - have not had a back ache since! I do know that where I go they store the syringes in the fridge. The nurse did mention that there is a fine line where it can get too hot so she keeps an eye on it. My experience has been that if I don't have the same nurse every time I have to educate and insist they do! They have always been very receptive to my suggestions. I always mention this site as a wonderful source of information.
After all, who knows more than us? I have also read the insert. Hard to believe there is no mention of warming the syringes.0 -
Hi all, the FDA would have to approve anything that went on the official label (insert). That's why it isn't there. Doesn't mean they shouldn't make the information available. Not that anyone would read the label anyway. . .
There's nothing like tips, etc. on the faslodex website though. There should be!
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If it were so inclined, Astra Zeneca has enough money and clout to start the process of running a change in the package insert by the FDA. The company also has myriad sales reps who could easily convey this information to oncologists during the calls they make to tout their various medications.
Tina
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HI Everyone!
I don't know if posting happiness is good or bad but I figure it can't hurt anyone too much! I had stage 2b breast CA in 2009 and then all was good til 2014 when I broke my back because my spine was riddled with mets from the first to the last vertebra. My tumor markers were 800 and something and I was a mess. Went on Fosamax infusions everymonh for six months, Faslodex monthly and letrazole daily. No chemo, no radiation. I now (8 months later) have tumor markers of 126 and steadily decreasing monthly. Although I have bone mets, I feel lucky to be alive today....AND feeling more like myself. I don't feel sick although still some pain managed by meds but love every breath I take. I have depended on these blogs here since 2009 and recommend to all to do the same. No one should go through this alone!
Much love and blessings ,
Val
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Hey Susan how is the trial going? I was supposed to do it but was disinvited because i take an antidepressant (fear of some cardiac complication). Is it working well?
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Hi Valerie the trial is going well. Tomorrow will be exactly one year for me. It has pretty much stopped the cancer from progressing, although it has regressed very little. As far as side effects go, I still get very bad heart burn if I don't take something for it. Also I used to get extremely tired to the point I had to lay down for a nap but it has gradually gone away. My WBC is always very low, sometimes critical and I was anemic for quite sometime. Otherwise, for me its been pretty good. I think because my recurrence was caught early, it made it easier for me.
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Hi all - hope are well. Just had my 4th injection today. Nurse was great no pain and using the heated car seats work well. My CA27-29 is still going up. I was sent for scans in October, all came negative which is good. Just curious, does anyone have an idea why the markers are still going up?
Best to all
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It seems like many of you have mets to the bone. I don't have mets there yet, but I'm sure I will at some point. The article implies that It's important to start medicating at the first sign of bone cancer. Thought some of you might be interested. http://annonc.oxfordjour...Bone health in cancer patients: ESMO Clinical Practice Guidelines
I hope that works.
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Hi ladies, I may be at a crossroads and it may be time to change meds...need your experience and your input...please.
Here's the history:
I had Stage II BC in 2002. Was diagnosed Stage IV nine years later with mets to sternum and lungs.
Xeloda worked for approx. a year to reduce tumors greatly, then cancer growth
Tamoxifen worked for 10 mo or so and got me to NED, then had some cancer activity.
Afinitor and Aromasin combo worked for approx 15 mo and got me to NED again. My tumor markers kept rising but scans were still clear. So my onc and I (after much discussion) decided to leave me on Afinitor and Aromasin because it may still be working and just add Faslodex to the mix. I've had 5 Faslodex injections total (3 months on Faslodex) Now, my tumor markers are rising again. They rose a lot this last month...almost 30 points. I've heard Faslodex can take a long time before it lowers TMs. My onc even said it can take a while. He said I should do 2 more injections and then a scan. If we see cancer growth, he feels I should do IV chemo (most likely Doxil) next. I've pushed off IV chemo for 3 1/2 years now and really am not anxious to start it. I did all that with my Stage II cancer long ago. But, I know eventually, it is probably what I will have to do.
I've also heard of ladies who have tried all the hormonals first before switching to IV chemo. I've only been on Tamoxifen, Aromasin, and Faslodex. My onc feels like if this current one isn't working, it probably is time to switch to a chemo.
What is your experience? Have any of you had success with Faslodex and how long before it worked? I don't want to give up on a treatment too early. Anyone had Faslodex NOT work? How long did you try? Did any of you go through MORE hormonals before going to IV chemo? Or, do you think it is better to switch gears if the cancer is growing and hit it with chemo for a while? Any of your experiences will help me.
Also, anyone on Doxil? What do you think? What is it like?
I'm hoping and praying that with a little extra time the Faslodex will work, but would love to hear your thoughts just in case!
Thank you all so much!
Julie
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This morning I am headed to get injection set no 58. This month I also see the oncologist. I fully expect her to call for some scans since it has been about a year. Technically a year is in January, but I have suggested that we do them in December since I have met my deductible during this year.
Julie, Over the time I have been on Faslodex there have been quite a few women who have not had success with the drug. And then there have been those of us who have responded well. I would be very hesitant to change treatment based on tumor markers. I would want confirmation from a scan. My current marker level is elevated, but scan after scan has shown no tumor activity so we are sticking with the plan until there is a reason to change. Doxil is an older chemo, given once a month. I only know one person who has received it [though there are many more] and their cancer was not impressed. But as you know, only one person doesn't make a study.
*susan*
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Hi Julie, I second what Susan says. Tumor markers work for some women and don't indicate anything for other women. For me I don't know -- mine have never been elevated above the normal range. Do yours always tell something?
I know it's hard not to worry, but you should really sit tight and wait for the scan. It may be that there isn't cancer growth, just as with the last scan.
The only hormonal you haven't had is an AI -- anastrozole or letrozole. That's often taken in combination with Faslodex.
If you don't want chemo maybe you should think about a clinical trial of one of the new hormonal-type agents? There are a couple Phase 2s open. They usually require participants to have had at least one line of hormonal treatment fail.
@Susan, good luck with the scans.
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Thank you, ladies, for your prompt and informative responses! I will speak to my onc about these if things don't go well. Hopefully, TM will go down soon and my scan in a month or two will be clear! Go Team Fanny Pack!
It helps SO much to have others to bounce ideas off! Thank you!
Julie
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Hi, ladies!
I joined the Faslodex Club today!
Let me go back a little.... I've been dealing with MBC for 4 1/2 years now. After enjoying 3 years of stability, my May scans showed some progression, so my oncologist changed my treatment to Xeloda. After 3 months on that, the CT scans should some more progression, which really concerned her because she thought it be a good option for me, so she ordered a new biopsy of my liver.
We did get good news from the biopsy -- the cancer hadn't mutated, and in fact she told me the pathologist remarked that I my cancer is "highly hormone receptive," so at our consultation, she recommended going on Faslodex.
While we waited a few days for insurance approval, I read this entire thread. I felt well prepared for my first injection.
When my nurse greeted me today, she had a syringe under each armpit. She then explained that she wanted me to take my weight off my leg while the injection was going-in. She also explained that it was a slow injection and even told me when she was "1/2-way done." She also told me she was pulling the needle out very slowly, to minimize any bleeding. I'm getting 500mg, so it was a 250mg shot in each buttock.
To say the least, all of the above are mentioned in this topic, so I was really happy how informed she is. But then, that really wasn't surprising to me because I absolutely love my cancer center--adore my oncologist-- and have never had a bad experience there.
Anyway-- the shots hardly hurt at all. I haven't experience any nausea so far, and feel pretty good. Fingers crossed it stays that way!
I'm feeling encouraged. :-D
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Welcome to the Fanny Pack, Queen of Hope.
It's great that your first experience with Faslodex was with such an well-informed and considerate nurse.
Bottoms up!
Tina
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Had my first shots on Monday. Femara bombed for me. After 16 yrs of no recurrence, it was quite a shock to get bone mets. No real se from the fasolodes except extremely sore butt cheeks. Loving hubby massaged the area and it felt much better next day. Hopefully this tx will work, very encouraged by posts on this thread! Is it ok to have a glass of wine on this med? It is my only vice...LOL
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Myra, go for it. [Actually] I drink wine in larger amounts than I should. When I mention it to my onc he tells me to "drink the good stuff".
Welcome to the club, Myra and Queen of Hope.
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Wine? According to both my onc and my experience, it's no problem. Like Pam, I may sip a bit more than I should once in a while, but what the heck!
Enjoy!
Tina
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Hi Fanny Pack,
I had my second loading shots yesterday. So far so good, no side effects!
Love,
Brenda
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Julie,
Sorry to read about the rising markers-and I agree with a scan very soon. I was dx'd in 2002 also, with liver mets. Gemzar cleared out the mets. Was in remission for 6 years on Herceptin.
Had a recurrence to the nodes behind my sternum over 3 years ago. Had Aromacin, which didn't work, then onc added Faslodex.
(My tumor markers never did go up). Was having node growth, so we tried Gemzar, which had saved my liver 10 years ago.
It failed, so I went on Kadcyla IV. and 8 months later, I am now NED. My onc plans to keep me on Faslodex since it has been showing great results over all.
I sure wouldn't hesitate to try an IV chemo. Doxil is an old standard that does work very well. But there are many other choices too.
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Hi all, thanks for this thread! I go for my 2nd shot this week. When I go for my 3rd shot in a few weeks, I have a trip scheduled that night. (Shot will be noonish, flight is about 6hours later.) I think I will be ok (first shot went fine) but just wondering if you had to fly shortly after and if you had any ill effects. Thanks!
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I have flown a number of times following my treatment.... 2 or three days. No issues to speak of. Never done 6 hours after however. But don't see any reason, besides squeezing into a seat with a sore butt, it would be a problem.
Welcome to the Fanny Pack!
*susan*
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Katherine, welcome! I can't see any reason not to fly. Next month I'm probably flying 12 hours after the Zometa/Faslodex joint attack.
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