Faslodex Girls Thread 2014

Mom_of_3

So I am new to posting. My story is under the 'Tell us your Story Thread' so anyone interested in the long version can check it out there. Short story is that I have mets to brain (dx 11/13), bone, axillary lymph node, and liver. Mostly hover in the state of denial, but sometimes the overwhelming reality sets in. My husband is a rock and a fabulous support, so we're shuffling through this maze ok so far.

I was on arimidex when the bone, node and liver mets appeared. Changed MO (long story) and put on afinitor/aromasin combo. Progression in liver, so I will start faslodex on Wednesday.

I appreciate all the info on this site and your candor. You give me hope and encouragement.

funthing42

Sorry hear that. So far Im ok. I did wake up with a migrane that caused blurred vision. Im also taking Ibrance.

First time for that.

Tina2

Welcome, Mom of 3. The good news is that Faslodex has been a relatively easy treatment for most of us. It's been my only treatment for the nearly five years since I was diagnosed with lung mets, which were rendered inactive in less than two years. I have been stable/NED ever since.

Be encouraged!

Tina

artistatheart

My joints ache a bit and I've had a mild dry cough, but nothing even close to intolerable.....just hope it continues to work.

Sarah0915

I have aches and pain, mild flu-like symptoms. I also have a fair amount of fatigue. But, theses SEs are so much better than the way I was feeling with active liver mets that they are very tolerable. I much prefer having both shots at once while lying down. There is pain only once instead of twice. Especially if it is your unlucky day and you happened to get the nurse with the more painful technique. I've been on Faslodex for 8 months and find it becomes much more tolerable each time. The loading doses were worse for me. I was pretty miserable the first two months. I know this is debatable, but I also have my clinic apply the adhesive warm pads after the shots and massage the areas as I walk around a few minutes. The clinic I go to does not believe the heat patches make the medication disperse too quickly. They are over the counter and called WellPatch Warming Pain Relief Patch. My clinic offers them to everyone. I didn't use them for several months but have found that using them leaves less of a knot and almost eliminates the next day pain and soreness.

I can't remember who mentioned Xgeva injections but I used to get those in my belly instead of my arm and found them very tolerable. Of course, I have a lot more tissue there than on my arm I wish everyone well and a long run with their treatments.

Mom_of_3

Thank you all so much for your encouragement and helpful tips. I'll check in on Wednesday, after I become a full fledge member of the club

Denny123

Golden-sorry about your mom! I have been on Faslodex for 5 years and don't have those SE's. I am on Kadcyla, however and all of my problems are caused by that.

GoldenGirls

Thanks Denny. Sorry that the Kadcyla is hard on you. I guess everyone reacts to treatments differently. She had no side effects on Xeloda except pink feet which cleared up after an extra week off between cycles and 6 cycles of "red devil" were easy on her. I have spoken to a few other women who also experience an ongoing bad cough on Faslodex and have travelling joint, bone and muscle pain as well. They're doing another chest xray before her next shots on Thursday just to make sure there isn't anything else going on, but her lungs were clear in her CT so we don't expect that it's anything other than SEs. The cough and pain also improve with an extra strength Advil so hopefully it will get easier after she's finished her loading doses.

I hope Kadcyla becomes easier for you. Hugs

Mom_of_3

Had my first shots on Wednesday morning. Two nurses; both shots at the same time. Not bad at all. No bruising and no side effects that I've noticed, except how my pee smells. Anyone else have pee that smells like hair perm solution? Seems to have diminished by this second day.

I walked around the medical complex three times with my husband before driving home. I'm hoping they always go this smoothly and that the medicine does its job.

Happy Cinco de Mayo everyone

Lindalou

Mom of 3, The smell in your pee is castor oil which acts as a co-solvent. Glad your injections went well.

Golden, sorry your mom is struggling.

Spring is finally here and flowers are beginning to bloom.

pajim

My urine smells for about a week, depending on how much water I drink. It'll go away. Glad the shots went well!

artistatheart

Ahhhhh.....Castor oil! I was wondering...

funthing42

Popping in totally breaking down. I have lumps on my buttocks. Worried that my rump will reap all the benefits while the rest of me falls apart. Finished my 3rd x2 250mg in each. Now will do it once a month.

Tina2

Funthing, lumps, fleh!

The idea is the Faslodex sits in a pocket your buttocks and does its work throughout the body over time. Be confident and take heart.

Tina (approaching five years on Faslodex)

funthing42

Thank you Tina

Totally stressed out becase I have cancer in my axilla nodes and a skin nodule about 1cm on my sternum.

So every little lump bump bite pimple is a potential mets to me. Its hard when your use to taking a daily pill.

Im waiting to watch it shrink but it is not shrinking.

Tina2

Funthing, hang in. Give it time. Seriously.

Tina

pajim

Furthing, you can try to massage away the lumps [in the shower]. I got them occasionally -- sometimes they would take more than a month to disappear. Hang tough!

Pam (3.5 years on Faslodex)

jobur

Funthing, I have also found massage helps the lumps go down. Had a bad one on the right side last month, just applying firm pressure with the heal of my hand and rubbing a bit helped. As the other gals said, hang in there! Do something nice for yourself, you deserve a little treat!

funthing42

Thank you all . You have just given me back my sanity.:)

Dvdsp

Hi! I wanted to ask you if anyone is taking faslodex plus taselisib, how is going on faslodex? My mum has to try it after failure of xeloda and letrozole.

My mum last PET (2 weeks ago)showed a lot of pleural mets but ned in lungs mediastine and bone (first pet showed spots). Hope it works because TMs are growing up so fast ;(

funthing42

Im sorry I havent heard of it.

dlb823

Dvdsp, I believe taselisib, a PK13 inhibitor (targeted therapy), is still in trials in the US. I haven't heard of anyone on it, but perhaps now that you've asked, someone in the trial will come forward.

If you put taselisib in the SEARCH feature to the upper right, it will bring up a few threads here when it's mentioned, along with a link or two.

I hope your Mum does exceedingly well on it! Please keep us posted on anything new you learn about it, as well as her progress. Do you know if it's already approved wherever your Mum lives, or will she be in a trial?

Here's a link about the US Phase III trial. https://www.mskcc.org/cancer-care/clinical-trials/15-111

Deanna

artistatheart

Thanks for the link Deanna, always good to hear of a new emerging treatment. Just had my monthly labs an my TM's jumped by 100 each which makes me nervous. I am praying that Faslodex is not failing me. I would be so happy to get Pam and Tina's mileage on this. It is such an easy Tx, although my joints are ACHING these days. Going to try some natural supplements my Onc suggested. She is also going to try adding back Ibrance at a lower dose next month. Hopefully my liver enzymes will not go nuts this time and will knock those TM numbers down.

funthing, my lumps lasted almost until the next treatment this time. I had one nurse who sort of jabs then pushes a little too fast. Her shots always hurt more than my favorite nurse (who is out on maternity leave!!!). When my favorite injects it is virtually painless after the first day. Once she got too close to the sciatica nerve and I had pain in my upper thigh and trouble walking normally for a few weeks. although walking more does help a lot.

Suefit

Had my 3rd dosing yesterday and my right side is so swollen and bruised. It hurt so bad this time. Different nurse this time. I am super sore and tired. Now only once a month! Hope it gets better.

funthing42

Hi everyone

Hang in there with the sore rump. Mine is just scarey I feel the lumps under my skin. Right away Im thinking my body is not absorbing it correctly. I learned I had a high tolerence for pain, Im not sure if this is good.

My 3rd set of tumor markers are 83. Feb they where in the 60's retest in Feb. 82. So I guess this is ok.

Im not sure if I should try my luck with chemo again or stay the course.

Pik3ca was neg. but I was told if it was positive there are promising treatment out there . Not sure of the treatment. Im not sure if pk13 is related to Pik3ca?

Nico1012

With a heavy heart, I wanted to let you know that diana50, Diana Mehrens, is an angel now. Her cousin posted this on her facebook page tonight.

"I heard the sad news that my cousin Diana has passed. I know that she's had a long struggle with cancer. I will miss Diana and her great wisdom. She has been an important part of our extended family, and I am grieving for this loss now. I have such great memories of my childhood, with the Hoffmans and the Mehrens together. I still miss Diana's wonderful mother and father. Now I send special love out to Diana's surviving sister, Linda. For all who knew and loved Diana, I send warm thoughts that we will honor this very special woman."

Meadow

hi ladies, I am wondering what your thoughts are on including diana50 on the Angel's List.....right now there is a topic of concern that perhaps people might be offended, or just not want to be listed as an "angel", so there is a pause in adding those who have passed to the list until someone knows it would be ok with their thinking. As she posted here often, thought some of you might know if it is ok to honor her that way. My condolences to all.

dlb823

Meadow, it looks like Diana was a contributor on the Power Of Daily Prayer thread, and I also recall posts from her that expressed her faith, leading me to think she would want to be included on the angels thread. However, maybe the women on the prayer thread would have more specific insight. Deanna

Ohmydarlin

Shots this morning...whopper of a headache tonight!

jobur

Bless you Meadow for posing that question. I hope you will find an answer in the Daily Prayer thread.

And you too Deanna, for always seeming to have the right answers. Is that you in those Foster Grants?