Faslodex Girls

Tish_13

And it looks like I am staying with Faslodex!

Thanks Jill for the good word on Zeloda. My original Oncologist is back from her own cancer adventure (she went out on medical leave just as I was found to be stage IV, talk about leaving in a lurch!) and is certain that we will continue to have a long, long relationship...I certainly hope so!

So to back track a bit, I saw my plastic surgeon at the end of December just after I had a bone scan and CT. My appointment with him was just before my appointment with my Substitute Oncologist. He went over the results and scheduled my case to be reviewed by the Tumor Board. TB suggested while there was progression, it was mild that Faslodex may take time to start showing results there could be mild uptake in the disease before positive results are seen. Their recommission was to stay on Faslodex till my next evaluation in May. Substitute Oncologist was not in agreement, felt the drug should be showing improvement by January also the TM have been creeping up..from 30s to 50s. He suggested Zeloda. I went ahead with what I thought world be my last injections.

So now Original Oncologist is back, she at first was going to change prodigal, but thought Zoleda was NOT the way to go, yet. After checking with the TB ( she is a member) and reviewing the scans and tests ( TM are now in the 60s) she feels I should give Faslodex more time and will look at were I am in May at the next evaluation. If I do change drugs, she wants to go back to Arimadex ( sorry about spelling) a drug I did not do well on at all. I hiked down the Grand Canyon when I started that drug for a 2 night stay at the Phantom Ranch and had the hardest time hiking out. My ankles and feet were so swollen and continued to swell till I convinced all it was due to Arimidex. The other drug to revisit would be Exemestane, I was on that for only three months, Substitute Oncologist took me off that when I started Faslodex. In between whose two was Tamoxifen( 2 years ) and that my have been the drug that failed and lead me to where I am now.

So what I have learned,

While I do not know about re visiting Faslodex as treatment. There is new evidence that "going back " to previous used hormonal treatment is and can be a option is some cases

I have gained some weight with Faslodex, but my hair is thick and strong, the nails look goods too...4 years ago I was bald. so If I exercised instead of sitting on my butt I could be Hot! But no my hiking down the Grand Canyon days are over...I think!

Sex, Oh yeah I want it, but the body is hesitant, husband is afraid I may break, so snuggle cuddle and make out like teenagers (old school teens) works for now...

Warm the syringe in your hands before they shoot you up , lay down and relax for the shots if you can, heating pad and rub the lumps to dissipate the bumps. Have someone to hold your hand and rub the lumps if you can.

Think good thoughts, but imaging the cancer being blown up, killed and squished like a bug is perfectly acceptable.

All the best to each of you, may our cancers die long, long before we do

Happy Valentines Day To All.

Tish

lwd

So, it does sound like some onc's are in agreement that staying on Faslodex longer than 3 months is worth trying, as long as the TM's don't go hog-wild, or the PET shows significant progression.  Makes me feel better about it.  And, having NO SE's from it is great. 

Happy Valentine's Day to all!  Big bear hugs and chocolate-covered cherries to everyone!

Lane

Aerial

Tree--I'm glad to hear about your good side effect!  My "in the mood" chart is, uh... let's just call it inconsistent.

I had my 19th shot of Faslodex on Thursday.  So far, it has kept me stable and has killed some of the little cancer buggers, as well.  I take Zometa, too-- and lately,  I've had more fatigue.  It's hard to know which drug to blame.  I also, just tried 18 days of gabapentin (for nerve pain) and it didn't work for me.  In addition to sleepless nights, I felt more loopy (than ever) and not able to drive. I don't know what they'll try next?  I'm feeling frustated but trying to focus on the glad that the Faslodex is working! 

M360

Ladies this is the first time on this site and I want to thank all of you for all the information on SE.  I had three left lung tumors that they found in January and in two weeks it's now 5 with two pleural based projecting into the epicardial.  Also now in the bones of my femur and right hip medullary canal, along with involving my vertebrae from T1 to T1l.  My Oncologist has moved out of state as well as four of my other specialist and I've been in a mood trying to figure this all out for myself.  Talking with a symptom specialist she said someone will start working with me on decisions next week.  Faslodex was mentioned along with 12 round of CMF.  This is my problem.  I have really bad arthritis and take Enbrel Injections every 3rd day, on 80mg of Prednisone so as one of the ladies mentioned, I have gained weight also and I eat well. No carbs, sugar, gluten etc.  Even weigh and measure all intake of food. They say it's all my meds which they gave me along with Lyrica for neuropathy.  Cytoxan really helped me last time, but I almost died from Femara, I looked like the Elephant Man and I couldn't walk or even pick up a fork or spoon. They added it to allergic reaction list of never to take medications.  I take Protonix for my stomach and it works, I did Nexium for a while and then had hip pain doctors took me off said it was causing to much swelling in my hip (this is a normal side effect for Nexium),  I'm so worried about SE, for me they are debilitating.  Reading the boards here I'm willing to try Faslodex.  CMF I was reading causes such memory loss and it doesn't get better after ending such it continues for 10years or more, so I'll have to discuss this more with my Oncologist.  However she wanted me to start Faslodex next week, all you ladies made me feel like this can work, and I'm willing to give it a try.  Thank you all so much.

susan_02143

M3,

For many of us, Faslodex has been the easiest treatment of all of them. At least, that is true for me. Chemo was rough, radiation was worse, aromasin was really difficult, but the Faslodex just doesn't give me any big issues. I do hope that it is as easy on you as it has been for me.

*susan*

lwd

Aerial,

Sometimes Neurontin takes a while to work, or you might need to change the doseage.  At first, it did make me dizzy and loopy, but after a couple of weeks that disappeared and it started to work.  I know it has to build up in your system.  I've heard it can take 2 weeks or more.  I think it was about 2 weeks for me.  I'm taking 3/day 100 mg.  My onc says some take 9 times that much, so it really varies according to the severity of your symptoms. 

I'm glad the faslodex is working for you.  We're still hoping it begins to work for me.  I've had no SE's whatsoever with it.  Well, maybe slight fatigue.  I hope your issues resolve.  It isn't easy.

Lane

208sandy

This is my first time posting - but I've been reading for quite a while.  My onc says next treatment will be faslodex so I've been interested in how everyone reacts - so far Arimidex is working (at least until I find out at next checkup at end of the month) but it is killing me - this is my second time on the drug, femera nearly killed me - out of control bp, chloresterol and blood sugar.  The past two weeks I am trying to get through Lyrica for ulnar nerve damage which I believe is from the dreaded Arimidex - the Lyrica is making me quite loopy and just plain sick and exhausted and I am on a VERY LOW dose - 75 mgs - let's just say I am NOT resistant to drugs which can be a good thing but mostly isn't.  Anyway just wanted to say hello and I'll continue to read - I appreciate the information on this thread so much.

lwd

208Sandy,

Let's hope the Faslodex works for you with minimal SE's.  My onc says his patients have reported very few SE's.  I really can't point to any SE I've noticed, other than a little fatigue, which might be attributable to the cancer in general.

Good luck!

Lane

SchnauzerMom

Faslodex has been gentle with me, and very effective on bone mets (hasn't been effective yet with my liver mets).  Faslodex did cause mild fatigue for a day or two after injection, and I did gain a few pounds, but on the whole, very tolerable.  I hope it is good for you, too.

(Taxol, however, is being a bit rough with me.  Really tired, diarrhea, and of course, the hair loss.  What bothers me most is the fatigue, so I'm hoping I adjust and get some energy back.  I hate feeling like a slug!)

Tish_13

I agree, Faslodex has by far been the easiest treatment by far as SE go and that is including the two clinical trials that are not listed in my signature! I wish it would make me NED or at least Stable, but I can live with slow to minimal progression as I can still work and life is good. There is a new clinical trial opening up for metastatic cancer here in San Diego. I will post more information as I receive it.



Have a Sun filled day, Tish

Peachy810

I had my 3rd dose of Doxil last week and am waiting for new scan in 3 more weeks.  (Supposedly, it takes a total of 4 months to show whether it works or not.)  My "2nd opinion" onc wants me to go on Faslodex if Doxil doesn't work.  Of course, I can't tell if the Doxil has helped me at all because actually I feel worse (weaker) now than when I started it.  So I'm afraid that we're just giving the bc more time to grow by waiting. 

My question is:  are many "Faslodex girls" also receiving other treatments at the same time as the Faslodex?  Would there be any problem with starting Faslodex now while I'm still waiting to see if Doxil has helped?

Peachy 

SchnauzerMom

Hi Peachy,  answering your question about receiving other treatments with Faslodex. I started Faslodex, Xgeva, and Femara all on 7/31/12.  Showed liver progression (grrrrr) and bone regression (yea!) in January.  Began Taxol and Avastin.  Doing all five now, and hoping the combination is powerful!

stellaratovsky

Peachy810,



I take faslodex along with femara (small little pill) along with Zometa (iv) for the bone.

Pamellla

I have been on Faslodex 4 months now. And if the nurse warms it first and gives the shot in the top of your butt cheek ( muscle ) it don't hurt as bad.. And I was on the Aredia and started the Zometa last Dec only 30 min. that was great, but you do need to make sure you hydrate.

Tish_13

I am only on Faslodex as of now. At my next scan, depending on any more progression we will consider adding armidex...again as I was on it prior to being stage 4. There are lots of options, do your research and tell the DR about the weakness. See if you have a local support group in your area. Being able to talk face to face with others helps.

Denny123

I am on Herceptin and Faslodex.

I have been on Herceptin since Jan of 2004, and it did bless me with 6 years of liver met remission.

maria38

Stella,

How is the faslodex-femara combo? I have been on Faslodex for 3 years now but will start with Faslo-Arimidex combo tomorrow. Will see if it will help with my small liver lesion.

stellaratovsky

Maria38, I think it is a good combo. The TM went down from 964 to like 396. The pain level is still there. Lots of achs and pains. Lots of leg and musle pain but aleve helps. I will take any pain as long as the Meds work. There are great days and lots of bad days. It gets really bad when the weather is bad. When it's warm I feel good when it rains that's when I start ripping my hair out.

sandilee

Do any of you taking a  combo of Faslodex and an AI live in California?  This isn't something that has been talked about at my onc office, but I think I'll bring it up next time.

   stellaratovsky--what tumor markers does your doc take?  Is it the CEA, or something else?

I'm going to have to have scans in the next month, and I'm starting to get anxious.  I've been having a cough lately, and of course, all I can think of is lung mets.  But my tumor markers are still down (CEA) so who knows.  I guess I will, soon enough.

Tree3

What does CEA stand for? My onc uses tumor markers to determine success of my meds.

sandilee

http://breastcancer.about.com/od/diagnosis/f/cea.htm

This is a pretty good explanation, Tree.  It's the one my onc had been using for me since my recurrance.  My first CEA test, when they found my mets and before Faslodex/Xgeva was around 260.  It's now down to 6 after 19 months of slowly dropping, which is a great result. I just wish it could last forever.

Tree3

Thanks Sandi. That is indeed a great result. I too wish it would last forever. My markers are moving down. Slowly but surely

Tree

stellaratovsky

Sandille-- I believe it is CEA. I am nervous I have an appointment my onc. Thursday. I pray everything is working.

susan_02143

I did an AI with Faslodex at the beginning, but have since dropped the AI. My CEA is really low these days, but since it didn't go up when the scans showed progression, we don't use this one. For me the 27.29 is the good one.

Sometimes a cough is just a cough. ::crossing fingers::

*susan*

bourscheid

Peachy:  I am on Doxil and Faslodex and Xgeva.  Have had 2 tx of Doxil and 3 of Faslodex.  Been on Xgeva since it came out.  Feel pretty good except for the Doxil mouth/throat sores and my hands/feet are VERY dry right now but not burning yet.  Praying it works!  Will have scans after my next Doxil round.

Peachy810

Thanks to those who answered my post asking about adding Faslodex to my Doxil treatments.  I learn so much on this forum.

I'm feeling a little better tonight because I received a message from doc's office saying my TM (27.29), which had been slowly rising each month, had dropped from 119 to 67. 

susan_02143

Peachy, Wonderful!!!! *susan*

maria38

Thank you Stella. I hope the combo works well for you. 

bourscheid

Peachy that is fantastic news!!!

c-k-j

Hi, ladies - I had a little discouraging news today when I went in for my monthly injection.  I had a routine (if there is such a thing) yearly PET/CT last week and my onc told me it showed a slight rise in the SUV on one of my affected lymph nodes.  My TMs have been rising ever so slowly, still way low and there is no growth in the size of the lymph nodes.

Sooooo he has started me on Anastrozole in addition to Faslodex.  I was counting on Faslodex to work its magic for quite a bit longer, but hopefully adding this AI will give it an additional boost.  I have many more years of hugs and laughter ahead of me, but I have to say it was a bit discouraging this morning.  Other than the bad news, the injection went well and I'm doing really well with no discomfortable SE.

Its good to know there are many others with good reports on this page.  Sending you all powerful thoughts of well being.