Faslodex Girls Thread
Comments
-
Hi Jaycee. I've been on Faslodex for coming up to three years and have never experienced GI issues with it. The Verzenio is another matter of course.. Wish I could be more help but I've not heard of anyone experiencing that problem.
0 -
Hi Jaycee, I'm sorry you're feeling so awful! I've also been on Faslodex for a while and I don't recall having GI problems that I connected with the shots. Aches, stinky pee and body odor, general malaise, but not D. Had enough of that from Verzenio.
0 -
Hi Jaycee...I get everything lulubee gets and I also get diarrhea for a couple of days. Nothing too bad though so I don't take anything for it. Honestly, I don't know if it's from the Faslodex, the Ibrance, the Xgeva or a combination of all three. I restart them all on the same day every month.
0 -
Hi,
I am new to this site and another person suggested that I post on this forum too. Has anyone developed an aggressive type of skin lesion near the original tumor? I have been on Fulvestrant since 8/2019 and have developed about, now, 6 weeks ago, a cluster of skin lesions that I originally thought were a skin reaction of some sort. They continued to spread so I had them checked and the biopsy indicated that the cells are 100% ER+/PR+ breast cancer. I was originally diagnosed with breast cancer in 12/2009 and since that time never developed anything similar to these skin lesions nor has a CT Scan revealed an new occurrence of cancer or any aggressive growth of the cancer I currently have.
I found a research article indicating that once cancer cells become resistant to Fulvestrant a new aggressive phenotype can develop. I was quite alarmed to read this. I knew cancer cells will eventually become resistant to the hormone therapies but never did I equate that to the development of an aggressive type of cancer.
Has anyone developed any skin lesions or any other type of a new more aggressive development/change while being treated with Fulvestrant? I now regret having agreed to this treatment because now I am worse off than in all the years since my initial diagnosis and treatment.
0 -
Hi Deb,
Welcome. Sorry that you find yourself here but you will find a wealth of information and a lot of support.
I haven't had a skin lesion as such while on Faslodex, at least it didn't get to that point. Interestingly, when I was on Arimidex I had a lesion appear on my chest above my left breast ( original cancer was in the right breast). At first I thought it was from my bra strap rubbing but it simply wouldn't heal and a change in bras didn't make a difference. I showed it to my MO and he agreed that it could be the breast cancer. When I added Ibrance it suddenly healed (I still have a small scar).
I've been on Faslodex for almost three years and did notice some weird skin changes under my left breast in the spring and summer of 2019. They never got to the point of being open lesions like the first time but seemed to be spreading. I added Verzenio to the mix in October of last year and, lo and behold, the splotchy skin issues disappeared.
I haven't heard about an aggressive phenotype with Fulvestrant but it seems with any of these treatments, once they fail, it can be harder to get the wheels back on the bus. Perhaps you can layer in a CDK inhibitor? It would be helpful if you added your treatment details as it helps folks to provide more informed advice.
0 -
Hi Sadiesservant,
Thank you so much for responding to my post.
I am working on adding the treatments I had undergone; have yet to figure out the whole process. But my journey hasn't been typical in the sense that while I have had conventional treatments, I did alternative as well especially after my initial diagnosis back in 12/2009. Intuitively and from past conversations, most people have not understood nor truly accepted my choices. So with that said, it would really require more explaining for anyone to get a full understanding of what I experienced and the choices I had made. So therefore I risk judgment and questioning, which I am literally unable, emotionally, to handle in any way.
Aside of that, your experience with Ibrance and Verzenio clearing up your lesions has given me more hope. My oncologist is now recommending Letrozole and Verzenio. But I have concerns about Verzensio as under the common sides effects, a decrease in WBC and lung inflammation are listed. I already have a consistently low WBC, below the normal range, and have chronic asthma. My concern is that this treatment may exacerbate both leading to further complications. My oncologist is okay with my starting Letrozole as a stand-alone treatment for now.
What side effects have your experienced while on Verzenio? Ibrance?
Thank you again for what you shared.
Deb
0 -
Hi Deb,
I also have consistently low WBC and have not seen any further decline on Verzenio. In addition, I was originally diagnosed as stage IV as a result of a large right pleural effusion. I would say that my lungs are definitely compromised from the MBC as I ended up with pneumonia in 2018 when I caught a bug that was making the rounds. Don't recall ever being that sick! But I've been on Verzenio for over a year and have not experienced any lung issues.
I was only on Ibrance for a short period of time - my blood wouldn't tolerate it as I ended up with severe anemia. MO said stop after only a few months. But both Fulvestrant and Verzenio have been good treatments for me. I've been on Fulvestrant for coming up on three years.
0 -
Hi Sadiesservant,
Thanks you. That's good to know about Verzenio. My oncologist said that the common side effects are diarrhea and low WBC, which, if it happens, the dosage would be reduced. Good to hear that Fulvestrant and Verzenio have worked for you. I seem to be the one who get's the uncommon/rare side effects. I'll see now what intuitively I feel moved to do--try Verzenio or hold off for now and take only Letrozole. Wishing you all the best as you continue treatment.
0 -
just wanted to introduce myself.
I started on faslodex in March? Then re added xgeva a month or so after that.
I will update all my treatment stuff below.
Seems to be going much better than afinitor.
I was on afinitor/aromasin 5 years. Last October my pulmonologist finally did a VQ scan and found scattered clots in lungs. That had been going on for years. Off and on breathing issues. Luckily my old oncologist retired. He had always said my breathing issues was anxiety. CT scans to lungs were always good. As were pulse ox. Just got to the point that I could only breath if I did nothing at all. Blood thinners and time have resolved breathing issues.
Now there is intense pain in my feet and ankles. Gradually getting worse. I have hydrocodone. I sent a message to my podiatrist to see about MRI's to feet and ankle. I saw him for first time few weeks ago. He said it wasnt neuropathy. It's gotten much worse now.
My list of doctors has gotten so long...I dont even know who some of them are.
0 -
Hi fredntan...I have a lot of pain in my feet and ankles too. Mostly my ankles. I do feel what I think is neuropathy (pins and needles, numbness) there as well. My knees are also an issue. I don't know which med is causing this. It seems worse since I started taking the Ibrance tablets vs the capsules.
0 -
Hi Fredntan. Welcome. What is a VQ scan? Glad your pulmonologist found out your breathing issues. It makes me angry to have stated issues dismissed as anxiety. My MO's PA did that to me and wrote an Rx when I complained of SOB early on. I thought no, it's a SE and you're not listening! I don't see her anymore.
0 -
Speaking of SEs I developed what I thought was a sweat rash under both breasts a couple of days after the first jabs, so treated it as such (after pretty epic night sweats). Managed to almost get rid of it and then it flared up again a couple of days after the second set of jabs, so I assume it’s the Faslodex? In for 3rd set on Thurs so we’ll see if it does the same again. I do see a rash listed in the SEs. The other one I have is not feeling hungry, so might lose a wee bit of weight which is much needed! Otherwise feeling fine and I think the pleural effusion has almost cleared as the pain in my back has eased, phew!
Just hoping that the SEs indicate that it’s working.....
0 -
Karen,
I've been on faslodex since July 2019 (paired with Ibrance since August 2019). I've not had the sweats although sometimes I do get serious hot spells. I assume that's the faslodex.
I will say that I have been blaming Ibrance for a lot of my side effects. Recently, I've only been on faslodex for a short time because I had to go off Ibrance due to liver ablation. Now I'm wondering if I'm blaming Ibrance for some of my side effects -- mild nausea, hot flashes, even fatigue, etc. -- that may really be caused by faslodex. So I think it's actually a very powerful drug.
Good luck with your next set of shots -- or jabs, you call it. Love that word!
0 -
Karen...I also suddenly began to get a rash under my breast. It's definitely something that just started the last couple of months. The only thing different for me was Ibrance tablets instead of the capsules. I only have one breast so when I'm home I don't wear a bra with a prosthetic for comfort reasons. The rash was not healing even when putting powder or creams to try to help it. So I searched the internet and found this and it has helped so much. My rash is completely gone. I wear it when I don't want to wear a bra and prevents the skin from chafing and keeping moisture away which is what keeps the rash going.
0 -
Thanks Jack5ie! Never heard of this type of product before, but makes sense.
Nurse had a look today when I went for jabs no3 - but it’s almost healed again. We’ll see if it flares up again.
0 -
No problem Karen! If you should need it, it definitely helps.
0 -
I'm in tomorrow for labs and 3rd set of shots. Fasting for labs, so they'll order me breakfast afterwards. Nice little treat while waiting for lab work. I don't think I've had any SEs with the Faslodex yet. I think all my problems are with the Piqray.
JACK5IE, that's a nifty little sling you showed. I haven't seen that before either. I think my mom might need to it check out for her issues. Thanks.
0 -
Went for my 3rd set yesterday, done by my nurse practitioner who did the previous ones and no probs at the time or previously. She checked out my now almost healed rashes so we’ll keep an eye on that together but she was happy with my treating it like a sweat rash. Only thing is this morning one injection site is now a whopper of bruise ( bigger than my whole flat hand) and well red & swollen. It’s not particularly painful thankfully, so I don’t think it’s a full blown allergic reaction, but it looks spectacular! Even my DH said Wow and he’s not easily impressed!
I wonder if it’s just a cumulative thing and my system is objecting...At least it’s a month before the next one.🙄0 -
Consider taking a photo to show the nurse next time and ask what could have caused it.
0 -
That's just what DH and I decided to do Shetland, glad you agree...it'll be pure black and blue tomorrow!
How did you get on Bliss?
0 -
Karen, thanks for asking about me. So far so good with my 3rd set. A different nurse gave the shots so I was a bit nervous since the first two went so well, but no problems that I can tell. Hope it's working!
0 -
I hope some long-time faslodex girls are reading this thread. Yesterday’s jabs (adopting Karen’s great word) seemed to go as usual. But by the time I finished my last appointment and was heading home, I was experiencing unusual pain around my low back and tailbone. It hurts a lot if I lean forward while sitting or try to bend over while standing, sometimes just stepping a certain way. When I removed the bandaids it seemed that one of the shots had been given lower than usual. Can anyone offer any insight? So far the nurse said I could take some Vicodin for the pain, but I want to understand what is going on and how to heal this.
0 -
Hi Shetland,
I've been on Faslodex for almost three years but don't think I can be much help. I've never experienced anything like that from the jabs. I do find that I am more prone to bleeding now and have had times when the injection site has been pretty sore but it's never caused back pain. It sounds more like you've wrenched you back somehow. Those symptoms are pretty typical for me when my lower back flares up. (I had an episode out of the blue a couple of weeks ago when suddenly my back went haywire while I was brushing my teeth. Took a couple of days of Motrin and heating pads to get things under control.) It is possible that they hit a nerve.
0 -
I talked to my nurse. She said there could be swelling so that when I move it presses on me and hurts, especially since I do not have much padding. I will try ibuprofen to reduce inflammation and heat to relax the muscles, as you said Sadie’s. It feels like the jabs set off muscle spasms. I can take Vicodin for pain at bedtime if needed. My nurse agreed it does not sound like nerve pain. She said this could last up to a week. I'm afraid I may have to request in future to not have the nurse who jabbed me yesterday. I feel bad about that because she is very kind and sweet. Maybe I will get DH to help me take a photo so I can show them where the injection was given and find out if it was indeed too low.
0 -
If you are also on Kisqali, look at active topics. I'm trying to get a conversation for those of us on Kisqali and fluvestrant.
0 -
Fulvestrant and Verzenio in my case Nopink. It seems the numbers on Kisqali are limited. Perhaps the fact that it is quite similar to Ibrance is a factor, particularly as Ibrance was out in the market much earlier. For those that can't tolerate the blood impacts of Ibrance/Kisqali there is a tendency to go to Verzenio as it has less of an impact (on the blood at least... in other ways the impact is huge!).
0 -
SP,
I started faslodex July 2019. One of the first times, I had definite pain (like sciatica) running down my leg. I mentioned it to the injection nurse. Since then, every time I get my shots, even though it's usually the same person, I remind her of that and she gives me the shots up higher. Some time ago perhaps it was Moth who posted a diagram that showed the two best places to give this kind of a shot, and there was an upper and a lower spot.
I hope you feel better soon, and I agree that I would ask for another nurse from now on -- you don't need to repeat this.
0 -
I've posted this over the years. Here it is again for the newbies on this thread.
https://www.oncologynurseadvisor.com/home/hot-topi...
Tina
0 -
Thank you, Tina. I printed it. Once upon a time I posted that one, too. I really want a subscription to Oncology Nurse Advisor. Sometimes I find a great article in it but am blocked by a paywall.
Bev, if they would do a refresher course, I would stick with her (ha, no pun intended!) because she is kind and goes very slowly.
0 -
Shetland, sorry for the painful shots. Some months are worse than others. I always tell the nurse to go very, very slowly or else I will have a painful knot all month. They need the reminder. My Faslodex jab sites were actually visible on my last couple of CT scans!
I imagine you know this already but just in case... always stand on the opposite leg from the hip being injected, so the muscle is relaxed. Turn on your car seat heater if you have one (I do this even in the hot summertime), walk walk walk, sit on a heating pad, take a hot bath, etc etc. Drink a bucket of water the first couple of days.
But you already knew all of that I bet.
So what else can I suggest... hmm... oh yeah: Arnica. I slather my jab sites with Boiron Arnica Gel and I also take the homeopathic Arnica pellets for several days after the shots. I really do think it helps.
Feel better soon, friend!
0
