Started Faslodex

[Lisa11171]

So I had my first Faslodex injection on Wednesday of this week and I have not had any side effects!! I’m so happy that I finally found a treatment that does not take away from my Quality of Life. 🥰🥰🥰🥰🥰

[Stage4Gir]

Yay you! So happy for that Lisa!

[Stage4Gir]

My pelvis had a mass that turned out to be Carcinosarcoma. Very rare ovarian cancer. Had surgery to remove and struggled with the decision to do chemo. Apparently it’s my only hope so will start that Nov 21. Thought of you and QOL which is sooo important to me too. We’ll see how it goes. I can always stop I guess if it gets too bad. Thanks for asking

[Lisa11171 in reply to Stage4Gir]

Oh, I’m so sorry. I hope the chemo isn’t too bad. I myself am petrified of it, but If that’s the only thing that they can do, then please let it be easy for you.

Can I ask how they determine if it’s a separate cancer?

[Stage4Gir in reply to Lisa11171]

They test the cells in the tumor.

[Lisa11171 in reply to Stage4Gir]

I did not even know this was possible. I’m so sorry. One isn’t bad enough??? Stay strong and keep on talking. We’re all here for you!! I’ll be thinking and praying for you also!! ❤️❤️❤️

[Stage4Gir in reply to Lisa11171]

Thanks Lisa. I like to say I’m an overachiever that’s why I got two cancers.

[kearnan in reply to Stage4Gir]

Ha. That is what I said when I was told I had stage iv. I said I was an overachiever. Great minds think alike.

[kearnan in reply to Lisa11171]

My prior ultrasound after I had surgery and was off Ibrance for 4 months although I was still getting the injections. They had found a new cancer tumor that grew far from the original one. They told me they would have to do biopsies again on both breasts and I asked why we already know what type of cancer it is? I was told that it could be a completely different type of breast cancer. I had no idea but apparently you can have two types of breast cancer in one breast. I asked my onco what was the worst case scenario...she said that if the new tumor was triple negative bc then I would have to do chemo (which I would never do) and radiation). But thankfully, they tested the cancer cells and it is the same type of I have ER/PR+, Her2a-. If it was a different type, I would have had to have different medications. First, I knew that you could get two types in one breast.

[Francesca10 in reply to Stage4Gir]

I am so sorry for what you are dealing with. I know chemo is scarey- at least to me it is. Hopefully, it will go smoothly and be tolerable for you. Do you have to get a port? Or can they just use good veins for it?

Sending hugs 🙏🏻🙏🏻🙏🏻 And love

[Stage4Gir in reply to Francesca10]

Thank you. Not sure about port as they didn’t mention but my veins arent too good so we’ll see

[mariootsi in reply to Stage4Gir]

I found that a port was the best way to go. It worked for me when I had chemo.So much easier than the stress of hoping they find a good vein.

The procedure to have a port put in is pretty easy compared to everything we all have been through.

I wish you well. I'll be praying for you.

[ALYogaGirl in reply to Stage4Gir]

I've had a port for 4 years. I was even cleared to have it removed but decided to keep it.

[Hidden in reply to Stage4Gir]

Hi,

I hope you are able to tolerate the chemotherapy and finish the course. I wish you all the best as you get ready to start treatment.

Take care,

Sophie ❤

[Stage4Gir in reply to Hidden]

Thanks Sophie. Trying to keep positive and tell myself I’ll sail through it. I’ve had chemo twice before and it was brutal but maybe 3rd times the charm?

[Hidden in reply to Stage4Gir]

You're welcome. Do you think that knowing what to expect from chemotherapy helps? Hopefully the third time round it will not be so bad for you and you will be able to tolerate the side effects better. x

[Stage4Gir in reply to Hidden]

I always like to know what to expect Sophie. To me knowledge of all makes me calmer. I’d rather know.

[Hidden in reply to Stage4Gir]

Yes, I know what you mean. I feel the same way. I can prepare better if I know what to expect.

[Have-faith in reply to Stage4Gir]

You have a good attitude! Keep it up. I am sorry you are now dealing with this. Sending positive vibes and energy to all of you. Faith

[kearnan in reply to Stage4Gir]

I know many women who have done chemo with no problem (except the obvious hair loss) but my friend who had stage ii breast cancer said she found radiation much harder than the chemo. You are a trooper and I think you will do fine. Remember anything you feel from the chemo will be temporary. Will be praying for you.

[mariootsi in reply to Stage4Gir]

So sorry. Chemo is tough, but if it works then it is the way to go. It really is a difficult decision, but so indi vidual.

[Francesca10]

So happy you decided to do it and have no side effects. ♥️♥️😘

[Lisa11171 in reply to Francesca10]

Thank you hun!! How’s everything going with you?

[Francesca10 in reply to Lisa11171]

Hasn’t been good the last month. I came off steroids because I started to feel weak so tapered off them. Well sciatica came back- had eye infection then uri- then both ankles started to swell. The infections are gone but now my Pcp says it’s lymphedema. In both legs? The nurse in me says no way. Wants me to see vascular surgeon. I am supposed to start iv treatment next Monday- Herceptin/perjeta. Had port put in two weeks ago. Honestly, don’t know if I will go ahead with it. I have felt really depressed from all the issues going on- it has been non-stop since august. And the damn pain is back which is debilitating in itself from sciatica.

I am on antidepressants for years-usually works but with all this happening, spiraled down.

Sorry for long response- been a lot. Thank you for asking Lisa-I am happy for your decision and outcome♥️♥️♥️♥️

[Lisa11171 in reply to Francesca10]

I’m so sorry! Sciatica is horrendous and I wouldn’t wish it on anyone. I wasn’t even aware you could get lymphodema in your legs. That must be excruciating. I’d definitely want to get all that figured out before moving forward also. If you feel that bad now, starting a new chemo might throw you over the edge. Please stay safe and feel free to call or write me anytime. I know that depression and it’s sucks!! I’ll be thinking and praying for you. ❤️❤️❤️

[Stage4Gir in reply to Francesca10]

So sorry Francesca. It stinks I know. Sending hugs and hope.

[Hidden in reply to Francesca10]

Hi Frances,

I hope that the herceptin/perjeta treatment is effective and you are able to finish the course. The constant pain must be hard to handle too. Hopefully you can get that properly addressed too. Why do some doctors close their ears to our suffering? They should be right on it whenever we say we are in pain and suffering. I'm sure they would feel differently if they or their family members were suffering.

Sophie ❤

[Francesca10 in reply to Hidden]

Thanks Sophie. The sciatica is what started this mess- I was put on dexamethasone for the pain- it worked but then I started to feel completely wiped out. Tapered off them. Wound up with eye infection, uri which have cleared up. Then leg and ankle swelling. On water pills for that now. Supposed to see vascular surgeon to rule out lymphedema in my legs. Now Monday supposed to start new iv treatment. I have over the top anxiety about it. I have had anxiety dealing with mbc but not like this. Going in to see Pcp tomorrow .

[Hidden in reply to Francesca10]

You're welcome, Frances. I agree that sciatica is horrible. I wouldn't wish that kind of pain on anyone. You have had so much going on with your health lately. It's no wonder you have been dealing with anxiety from it all. I hope the vascular surgeon is able to rule out lymphoedema in your legs. Maybe it's something else that can be easily treated. Keep us posted on how things go tomorrow and as you move forward with your new treatments.

Sophie x

[Rhwright12 in reply to Francesca10]

Hi Francesca! Herceptin/Perjeta is no big deal! I’ve been on it 3 1/2 years...work full time and went on the Rockin Roller Coaster last month on my Disney trip...U can do this! I’ll pray for u that God will remove that anxiety that is trying to keep u down...🙏🏻💕

[Francesca10 in reply to Rhwright12]

You are right on about the anxiety-never had this much and it’s about the treatment. Can’t seem to get past it

[Libra48 in reply to Francesca10]

Hi Frances so sorry to read you’ve been having a rough time. I can somewhat relate to how you have been feeling. Last month I found out Ibrance/Letrozole stopped working after only 7 months and 2 scans. That really did a number on me. I couldn’t stop crying and couldn’t get out of bed at times. Thank god I was still working from home since my oophorectomy. I do go to therapy sometimes but I’m also taking an antidepressant now which is helping. The anxiety I was feeling was uncontrollable. I didn’t want my kids to see me so down and sad. I began a new treatment two weeks ago but I’ve been experiencing some pain in my left thigh area.

I hope you find relief soon so you can begin your new treatment. It’s not easy what we’re going through but we need to try to push forward the best way we can and ask for help if we need it.

Best regards, Maria xoxo

[Francesca10 in reply to Libra48]

Thank you Maria. I know what you are feeling. I went through it in august when my allergic reactions to ibrance were getting worse and the scan was not showing improvement. I was so upset. I started xeloda and had another reaction.

My first treatment is Monday with Herceptin and perjeta. I am terrified-my body is unknown territory with drugs and how it will react.

What treatment are you on now? I had the liquid biopsy done to see what mutations were in my breast cancer. My her/neu used to be negative now it’s positive and I was positive for the pic3 also. Did you have this test done?

The test had to go through approval because it costs so much but the foundation did it and called me with acceptance. I did it only because the ibrance failed-and the results are specific as to what therapy will target the cancer.

I hope you have a good response to the new treatment and it kicks ass!

I know how difficult it is to change treatments and accept all the crap that goes with it. The whole thing sucks.

Please let us know how you are doing.

Sending hugs, 🙏🏻🙏🏻🙏🏻 And love

Frances

[mariootsi in reply to Francesca10]

Oh, I pray you have smooth sailing now after everything you have been through.

[Francesca10 in reply to mariootsi]

Thank you Marianne♥️♥️♥️I hope so too. Just damn scared.

[mariootsi in reply to Francesca10]

I know, all this stuff is scary, but I feel you are going to do well!

Love and prayers,

Marianne

[kearnan in reply to Francesca10]

Did your pink eye clear up?

[Francesca10 in reply to kearnan]

Yes but sciatica is back with pain. I have too much anxiety about iv treatment now.

[kearnan in reply to Francesca10]

Sorry to hear that. No matter what they tell me as long as I am not feeling pain (just discomfort from side effects of the meds), I am good. Once pain comes into this, then I have to make decisions.

[Hidden]

Hi Lisa,

I'm so pleased to hear that everything went well with your first faslodex injection. Let's hope it helps stabilise your disease and pushes it right back for many more years to come.

Sophie ❤

[cpidacks]

Hi Lisa: I have been on Faslodex since March with very few side effects. I have had itching in the area of the injection - usually on one side, soreness, bruising in the area of the injection and hardness under the skin. I think it depends on how the nurse injects the drug. I usually have two nurses inject at the same time - office preference. Last month one nurse did both sides and I only had a small bruise on one side. It's great you did not have any side effects, but I think it will vary month to month. The Faslodex has kept my liver tumor stable and my labs are normal. Good luck with your future shots.

[Rhwright12]

Awesome! Hope to hear this working for a very long time...😀

[kearnan]

I have been getting the falsodex injections for over a year and a half now. The easiest part for me. I feel no pain and can sit down immediately. Glad to know that you have no problem with them either.

[mariootsi]

So happy for you Lisa! Faslodex seems to be well tolerated!

[hopenowandtomorrow]

Very happy for you Lisa 💕🙏❤️🌈!!!

[8576]

We all have different reactions to these meds, however, I have had three injections of Faslodex and no side effects except for, I think, a bit of discomfort on my left side because of the tumour on that side. Only lasted a day or two. That was the first month now it will be once a month.

Minesing Woman (June S.)

[Libra48]

Hi Lisa... I started faslodex two weeks ago. Its my second line of treatment. I started off on Ibrance/Letrozole but only lasted 7 months and boy did it kick my a$$!!! Tomorrow I go for the injections again. The right side didn’t hurt much but the left side did hurt a bit. The nurse wrapped the injections in hot packs for a few minutes before injecting them. Afterwards she gave me two hot packs and I put it on each side on top of my underwear. Once I got home I laid on my infrared heating pad. The last few days I’ve been experiencing some pain on my left butt cheek and down my thigh. I’m thinking it’s a bone met I have. I’m going to mention it tomorrow at my appointment. Praying it works well for the both of us!

Best regards, Maria

[Francesca10 in reply to Libra48]

Maria

Please make sure you tell the onc about it. Sounds more like sciatica if it starts in the butt and goes down the leg.

[Stage4Gir]

Thanks so much Sandra. Getting another Cat Scan on Friday to check for spread (already??) just had the surgery sept 27 and start chemo nov 21.