Faslodex Girls Thread
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Kaption,
I had occasional mild nausea when I started Faslodex, but it virtually disappeared after several months. Ginger capsules and saltines helped. I don't recall any issues with constipation during my five years on the treatment, but then I eat fruit and drink strong coffee every morning!
Hang in!
Tina
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Thanks, Tina. I'm hoping the nausea is just a phase and the constipation will end when I'm on once a month shots. Both are unusual for me.
Thank you!
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I have never had nausea with this TX so far, but I also like strong coffee, all day long, and I've noticed I don't have the taste for it like I used to. Idk if it's the meds or if they changed the coffee!
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Kaption, the same thing is happening to me now with the tumur markers. I just started the monthly faslodex on wed and the ca27-39 from that visit is up higher than its ever been. 197. hmmmmmm. after my first month on ibrance/faslodex, it went down by only 1, but at least not up! Now this is only one month later and right back up again. I have to try to concentrate at work so i will take half an ativan. I worry about telling my parents. they wait on pins and needles for that number and I hate it when I have to tell them it's up.
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HLB, it is nerve wracking for sure!! I'm just, right now, counting on it be cells breaking up and my body adjusting to a new treatment. No significant new pain-so that's good.
I know what you mean, telling family members is awful. I feel like I'm disappointing them. My husband always knows of course, and he's getting used to the roller coaster. And I now don't tell my kids (grown) anything unless it's major and for certain.
The other frustrating part, while we are venting, is not being able to make long term plans. We love to spend January-Match in Florida, but feel like we can't plan on it until after the next scan.
Oh well, one day at a time. *sigh*. Ok, back to life.
When is your next scan?
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I don't have an appt for a scan yet. You could get set up with a good Dr in FL so you don't have to worry when you're down there. My parents do the samne thing. We have a trailer at ORO near four corners if that sounds familiar. Shands University of FL is an excellent hospital. I've been to the one in Gainesville and there's another one in Jacksonville. The radoncs there are giving sbrt to limited mets. They're are trying to redifine what is incurable with met cancer. My mom is worried now and I'm irritated that I have had one good treatment (letrozole) and the next 2 seem to be failures. Hopefully it is the tumor dying reaction. *sighhhhh*
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HLB,
We did come to FL once after my mbc diagnosis. We most often come to the Cocoa Beach. Went there and visited an onc and got treatment in Vierra. It was ok because they were doing what my home onc instructed. My onc here actually like my FL onc's info and even changed the TM she uses because of him. We missed last winter because I was in the hospital in November and in no condition to travel that soon. Hoping for either there or Destin area. If I can stay on just Faslodex it should be simple. Let's hope. All depends on September scans.
Interestingly, if we had been able to travel last January when I was on Ibrance getting it delivered to us in FL would have been complicated. Too long of a story to put here, but glad I don't have that issue this year.
Hoping a good turn around for both of us.
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I went to the Duke Cancer Center recently for an evaluation. The oncologist I saw told me they don't run markers. There are too many instances of a marker being a false positive (or elevation) or false negative. They don't want marker numbers to dictate treatment. But for me, if my onco had not run a marker, I would have received treatment much later.
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I have a question I am on Medicare and I've been on Faslodex for 4 cycles. Medicare pays 80% of the cost of the shots and the remainder 20% has been getting paid by my clinics "foundation", which has now run out of funds for me. Does anyone now if the manufacturer of faslodex provides any kind of financial assistance and if so what is the procedure? I have my appointment tomorrow and if I can't find help I'll be responsible for $380 for each time I get the shots. My only income is $1000 month for disability and my daughter, her husband and grandson all live under my income. (daughter is waiting for her results on the bar exam to get a job as a lawyer, in the meantime she's been applying for all kinds of jobs. Son in law is waiting for immigration to clear him for work status.) I would really appreciate any help.
Aurora
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hi everyone. Zarovka started a new thread in the stage 4 forums titled how many are we 2016. She started this thread last month. Z is attempting to count the number of metsters posting or lurking on our stage 4 forums. We are both thinking that folks possibly have missed the thread because they respond to threads only marked as their favorites. If you don't mind bumping over to that thread if you have not already it would be really appreciated.
Thanks so much, Mary Anne
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Aurora, here's a link to the page of the AstraZeneca site that mentions patient assistance and provides a phone number . Give them a call!
http://www.faslodex.com/breast-cancer-resources-an...
Good luck!
Tina
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A question for those who have been on Faslodex a while. (I'm on it & xgeva only) I just started my monthly schedule. How flexible are MOs on the shot schedule? If I am out of town a month, can the shots be delayed a week?
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Kaption, I've delayed my shots a week many times. Often it's five days the first time then two more the second month, but I've also done 7 days late. My onc says living is more important.
[And I'm out of town a lot for work plus vacation]
P.S. I hope you're going someplace really great.
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Kaption, I have delayed my Fas shots a couple of times by a week and once my MO made me take a break for an additional 2 weeks. Sometimes insurance likes to dictate the schedule, but I've been able to work around it. So yes, it can be flexible and your MO will most likely agree.
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Thanks pajamas! Hoping to maybe go to Destin in November.
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Hi Aurora,
There are a variety of patient assistance fund programs for different drugs that aren't fully covered by Medicare.
Begin at the AstraZeneca website:
AZ&Me™ Prescription Savings program for people with Medicare Part D
- AstraZeneca medicines provided at no cost - review the list of medicines available through this program - Faslodex is on the list
- There is NO cost to sign up for the program
- Once enrolled, you remain enrolled for the remainder of the calendar year. You may reapply the following calendar year
- Medicines are mailed to the patient's home or physician's office
- Patient, physician, or caregiver can request refills
Click here to find out if you may be eligible for the program.
In addition to the programs offered by AstraZeneca, other organizations also offer progams that make medicines more accessible for people who need assistance. Learn more about additional programs offered by AstraZeneca and other organizations.
https://www.astrazeneca-us.com/medicines/Affordabi...
Do let us know how this goes for you...it's a big hit on your pocket book.
Also, there is a very long and often winding conversation on patient financial assistance at https://www.smartpatients.com/conversations/18013-...
You'll need to enroll in Smart Patients to access it, but it's invaluable. You'll need to scan the posts, but there are lots of tips for financially surviving cancer and other expensive diseases.
I'm surprised you don't have a supplemental plan, even Medicaid, to cover additional costs. But that's another conversation.
Healing regards, Stephanie
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Thank you for the information Stephanie, I called AstraZeneca yesterday and they told me to have my doctor fax over the prescription for faslodex and they would cover the cost while processing my application. Today I went to my doctor and they gave me the shots and they said they would arrange everything with AstraZeneca and not worry.
I also got the results from my las PET and Doctor said I'm responding well to the treatment I read the report online and it said bone mets look as being treated and no new lesions anywhere.
Only area was some fluid in the lungs which doctorsaid not cancer and referred me to a pulmonologist .
Thank you and all others who responded to my cry for help.
Aurora
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Aurora, so glad for your good news on all fronts!
Saw my MO for the first time since starting Faslodex. (Been seeing the NP for my 1st 3 shots)
We talked about my all time high TM number from last time. She said we would ignore those numbers for now-talking about the lag between treatment and response, etc. Scan is scheduled for August 30 and that will give better information.
I asked about the "tumors flare" idea discussed here and other places. She said "it has been reported, but happensless often with bc. More often happens when treating prostate cancer."
To those who saw my post about swelling under my knee- of course is was not swollen at all yesterday! But I described it, she examined me and felt sure it was a muscle strain. Of course, it was swollen last night after I'd walked a bit. I agree that it's not a blood clot- just muscle.
Overall, good visit and I told her I feel SO much better off of Ibrance. I hope this is the treatment for me for many years!
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Aurora:
A quick web search brought http://www.needymeds.org/drug_list.taf?_function=n...
Also check direct wirh your Doc or social worker at your center they usually know good ways for hel
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kaption,
Yay for good appointments!
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Well, I'm glad my MO said we are ignoring TMs until after the August 30 scan, because I just got last week's and it's another all time high. Hoping it's the response lag. Now, 3 weeks to not think about it!
I'll hold onto your scan results, Deanna!!
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As a follow up to my 3 weeks of waiting for a scan to see if my TMs are accurate and trying to tell us something...
My story is that I was originally HER2 positive-but barely and each biopsy was lower. My first treatment (with Taxol) was Perjetta and Herceptin. When that failed, I had another biopsy (in preparation for a trial) and was dx HER2 negative. I know your cells can go back and forth, and I know being borderline can be a challenge. I do not know enough about HER2, and plan to ask for questions- especially if the scan is not good news.
Anyway, have any of you had this borderline issue? And is there a discussion board about it? I saw one for HER2 positive, but did not dig around in it.
Thanks, and I'll keep looking.
Fortunately I do have a trip coming up to distract me for a few days!
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Kaption- I was Her2 negative with my primary BC diagnosis, but when I had my bone Bx in March, it showed ++. Being borderline sucks! My MO did not want to treat it in the beginning, but after my 3 month bone scan and CT showed progression, he switched me from letrozole to Faslodex and added Herceptin every 3 weeks. I won't know until September if it's working or not.
If you are now Her2 negative, not much should change except for no Herceptin, Kadcyla or Perjeta in your treatment plan. Evidently, these switches in our BC cells us more common than most MO's are willing to admit.
Debie
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Thanks, Deb. It's nice to know another border-liner. If my next scan shows some progression, I'm definitely asking for another biopsy if possible.
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I'm in the same mindset for a repeat biopsy if things don't improve. The only problem (for which I am thankful) is my mets are bone only. It's very difficult to test bone specimens extensively because of the decalcification process histology must do to prepare the specimen. I just hope my current cocktail works. Maybe I'm just one of the people Ibrance takes several months to work. Ugh...
Deb
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I'm bone only also. My last biopsy came from my left hip. For better or worse it can be hard to find a spot large enough.
Scan is August 30. Hoping it doesn't match my rising TMs.
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Praying for clean scans for you. Maybe the rising TM's are from inflammation somewhere, or dying cancer cells!
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jbrown- I recently transferred my care to Duke Cancer Center and my onco also told me she doesn't do TM testing because it isn't reliable. Was a bit disappointed to hear this. Overall, I'm very satisfied with the care at Duke, but my previous onco did monthly tm testing that always seemed to be spot on.
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Kaption, I had a higher than ever marker last time which had me pretty worked up because they are always a good and accurate indicator for me. I just had a scan Monday and most things are the same with a few areas of improvment. I think it's definitely different with this treatment. I've been on ibrance/faslodex for 3 months now. My onc did say that sometimes it can get worse before better and it can take time to see the full effect of this treatment. people had been telling me that on these threads and I really tried to believe but I was still so worried! Well they were right, everything is on track. One problem is I used to get the markers every 3 months. Now with this treatment it's every month. I don't really want to give up the opportunity to get the test, but mentally it's probably not such a good thing having it that often. Anyway, I hope your scan is great news and try to hang in until then! Heidi
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Heidi,
Thank you! That is reassuring! TMs have been pretty accurate throughout my almost 3 years of treatment. But my MO always reminds me it's scans and pain that are more important. Unfortunately my pain has been somewhat worse the past 2 weeks. But, I have been traveling and I'm sure that is a factor.
I do think there can be a treatment lag going on here. I'll know in two weeks.
Thank you so much for the reassurance.
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