Faslodex Girls

Linda: I was on tamoxifen for 3 years before I had a local reoccurrence (under the same arm that had mastectomy and axillary dissection previously) as well as liver mets, now lung as well. I actually thought the tamoxifen was easier than the faslodex. Everyone is so different. I have loads of joint pain with faslodex and I didn't have that with tamoxifen. Yes, lots of hot flashes with both.

My question is this: my onc said only faslodex if you're post menopausal, and tamoxifen was for pre-menopausal. If you're newly post menopausal, why not try arimidex or femara, more front line endocrine therapies. I was told Faslodex was my last chance at endocrine therapy. 

But if I have learned anything, it's that each of our cancers are very different. A doc told me they will have designer treatment eventually configured for our genes. Wish they'd hurry up. So please take this as just food for thought. Plus if you dont have complete confidence in your doc, please find another one. There are great ones out there.

Syr, I don't really know. I thought scans trumped markers, but if the scan is unclear I have no idea!

My good cheek wasn't happy today. First time this side has hurt, but then the bad side didn't hurt much in comparison. Nurse Linda says she is starting to feel lumps, maybe scar tissue, and it is getting progressively harder for her to to do the injection. I wish I could think of a way for her to be higher so that she can use gravity more to complete the push.

Met with the research doctor and received my trial drugs, which don't really have a darn thing to do with MY disease.

And my markers are back. Just hanging out at their new normal levels. So another 28 days is behind me.

*susan*

SyrMom and all the Faslodex Girls,

My bone scan at the end ( May 2012) of a three year clinical trial of Bisphosphontes lit up like a Christmas tree. I was NED at the beginning of the trial June 2009, I was NED April 2010. Then last March my mid back was hurting more than it should. However I had just switched from Tomoxifin to Exemestane. Armidex was my first choice, but it caused me extrem pain and swelling. My blood labs were normal, tumor markers normal, I was having a bone scan in May. I and the DRs felt the pain was from Exemestane as Armidex caused me such discomfort.

Then here I am in May this year, so happy to be ending this trial of Bisphosphontes, taking a pill daily for 3 years at 5:30am EVERY morning. I have my blood work done, all normal, tumor markers normal. Then the scan and my Oncologist is calling me at 7:30 in the morning in disbelief. I have bone mets! The CT scan and bone biopsy confirmed bone mets. My tumor markers have creeped up since July when I started Faslodex but only 2 points out of the normal range!

The real kicker is that this trial was to prevent bone mets. So what if Bio says Bone Mets, tumor markers say well maybe, maybe not...I don't feel or look sick and I am mad enough to beat the odds. I hope I have my grandmother's genes. She beat ovarian cancer in her late 40s. Had breast cancer at 80, bone mets at 85, died at 93 of old age.

My point is in my short time dealing with this new adventure there sure are a lot of variables and no clear answers. Ask a lot of questions, read up on all the options, be the squeaky wheel with all your doctors/RNs and draw those you love close. Every day counts,

Hugs

Tish

Happy Thanksgiving to all out there in the stage 4 world

Hugs and warm thoughts,

Tish

Faslodex never kicked in for me.....hope others have better luck. On to affinitor.

Bobbi, I hope Affinitor knocks it out of the park!

Tina

Do you have Short term or long term disability?  Short term is usually for 6 months and takes you into the wait time for Social Security Disability.  You might want to go to the Social Security thread.  6 month waiting period after approved; 2 year wait for medicare.  However, cobra can take you the 2 years if totally disabled (usually only 18 months); yes, expensive, but beats no insurance.  Stage 4 breast cancer falls under one of the compassionate approval (there's a list of compassionate illnessess) and this should be noted on your claim form to help to expediate approval.   You might also qualify for other programs like SSI or medicaid, etc.

Ranger Mom: Syrmom gave a good rundown. Just to further clarify, ask your job if they have a disability policy. At the same time, you will need to apply for social security (SSDI), you can do it online. It's pretty easy if you gather your medical records together so you can list your doctors contact info.

You are eligible to maintain your health insurance but you need to pay 100% of the premium (so what you pay now plus what your employer pays) plus an administrative fee. This is COBRA and your employer is required to offer it by law if there are more than 50 employees. 

Best case scenario is your employer has a private disability policy plus you can get social security too. I was very frightened about the loss of my income and I luckily got both. A year later, at least that stress was removed. One step in front of the other. Hang in there.

It is encouraging to see the good results of Faslodex and also to know there are other options for those that are not getting the results expected from the drug.  I haven't posted in awhile but wanted to post that all is going really well.  I had my 13th injection yesterday!  My markers are still really low and I'm tolerating the drug well.  With the nurses only injecting the needle as far as they need to go to get in the muscle, the discomfort is really minor.  I iced it down for about an hour then went about as normal.  I finished my Christmas decorating and house cleaning today and it didn't slow me down. The minor side effects I have are thinning hair and dry skin (and eyes.  I use artificial tears throughout the day) but no hot flashes nor insomnia.

One drawback is having to be at my cancer center every month, no exceptions.  Last month my injection was due when I was going to be in FL for a cancer conference and my friend at a cancer center in Atlanta, got me in to see a doctor there who would order the injection.  You would have thought I was going to Mars.  I called them months before to clear it, I called my insurance company to make sure they would cover it, my doctor faxed his "release", I was on the phone to this person or the other for two weeks leading up to the appointment and yet the day before I was to go in for my doctor's appointment and blood work, admissions still didn't have any insurance information.  We made the appointment for dr. and injection on two separate days to make sure we could straighten out any problems.  What a mess!  Sooo I guess I will have to plan my life around my monthly injection at my home cancer center.  And the pamplet in the drug says "If you give this to yourself at home...." !  I guess as long as it is refrigerated it is possible.

Sending positive, loving thoughts to all.  Thank you for the encouraging tips -Benadryl for the allergic reactions, brilliant - and personal messages of hope.    Hugs, 

I'm with you, sandilee-- grateful to be on a relatively easy regime for seventeen months and currently running with the Stable Boy. (It would be NED if there weren't visible mets in my lungs, but Faslodex has rendered them inactive, so I'll happily settle for keeping company with the Boy.)

Butt and back aches notwithstanding, we are working travel and other plans around the injections and pleased to be doing so.

Tina

Ditto for me checking in from Mexico. Heading home to get my next injections on Fri. Eva

Good morning my faslodex friends.......hmm, haven't seen anyone around lately, hope the page is still open.  Well, I have a few questions now that I'm coming into my 4th month of stage 4 diagnosis.  I'm coming into my 4th month on Aromasin and my second month on Faslodex with no known side effects.  But lately I feel tired as all get out and just want to curl up and rest whenever I can.  This is kind of new.  Four months ago I had no energy before any meds and it's not that I don't have energy I just want to sleep.  And this is new.  Normal at all with the meds?  No pain, no side effects (hot flashes and stuff) lucky me, and the meds are working,  but now all I want to do is sleep..

Also, what does NED stand for and what do you mean by hanging out with the stable boy?  what am I not getting?

Thanks,

Teresa

Thank you, Stella.  I think I'm hanging out with the stable boy and I'll take that too.  I hope some day I'll be NED.

Teresa

Eva, I do live in MA and the weather has changed dramatically.Cold....Also, it's the holiday season, and the month my son died of Melanoma 5 years ago this month.  Oh, yeah, I'd like to crawl back to bed.

I was in Mexico for three months last year before I was diagnosed and spent the holidays there with my other son and his family.  I was in San miguel de Allende and loved it.  Not quite ready to leave the medical team this year with my diagnosis only a few months old.  But am planning a barge trip in France in April.

fWhen will you return to Mexico?  And thanks for writing

Teresa

Teresa: I did a barge trip in France (Canal du Midi) years ago and had a blast. 

Go and enjoy. I am spending as much time on Isla Mujeres as I can. Plus planning a trip to stay on the tidal pools (warm water heated by the volcano outside your bedroom) in a house on the Big Island. Check out Shangri La in Hawaii on You Tube.

It sounds crazy but I live a pretty great life as I am spending my retirement without fear of getting old. I can say that on good days. 

On bad days, I get scared of being sick. 

Eva