Faslodex Girls Thread
Comments
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I take a mild blood pressure med and my bp has been "borderline" lately. My mother had very high bp, ( and a heart attack and by-pass surgery at age 52) but was a life-long smoker. So, I always discounted that as a family thing. No heart issues on my dad's side. But then, no cancer either.
Anyway, I will be interested to see what the neurologist says.
I have too many "ologists" in my life :-)
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Congratulations Kaption on good results.
Ziz
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Hi Ziz, How are you doing? Well I hope! What tx are you on now? Seems like I haven't "seen" you around lately, but I have only been keeping up with a few threads. I'm still on Ibrance & Fas, so far so good, next scan is end of January. Best to you!
Dear Deanna, I do "see" you around but haven't said hello for a while. How was the big get together in Vegas this year? Hope you were able to keep a bit more in your normal eating routine so you don't need a week to recover this year. Are you still doing okay? Sending a hug your way.
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Hi Jobur, thanks for asking.
I'm on faslodex and will be starting ibrance again. I got the first shots and was not so bad. I hope this tx kicksthe big C ass.
I have been feeling short of breath I can't run or play tennis so that is not good as I love exercising.
Happy holidays to all of us!
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I hope you each have had a wonderful holiday. We were scheduled to celebrate today with our in town family, but I woke up with a sore throats and stomach issues. So, going to postpone that.
Also bummed over last week's PET results of "overall slight worsening" of bone lesions. Particularly the right femoral neck which has shown pretty significant progression on the past three scans. I see the MO Thursday. I'm not sure if she will make the change to xeloda at this point, or try to squeeze out another couple of months on Faslodex. I've only been on it since June. Feeling blue today.
Here's to a much better 2017!!
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Hi Kaption, I am sorry you are not well, and I hope you feel much better soon.
That is disappointing about the PET results. Have you done any rads to the femoral neck for either pain relief or treatment? I know a lot of people don't like rads, but it gave me back my life. Because of it I am no longer crippled and in agony. My body doesn't tolerate opioids.
Best wishes for 2017 and I hope you have a productive and positive MO visit on Thursday.
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Thank you, Freya. I don't mind rads at all (except the temporary fatigue) but I've never had them except to relieve severe pain. Like you, they have put me back on my feet repeatedly. I'm just not sure if they are used as treatment without pain. Guess I'll find out soon. I've never had anything done to the right side.
Thank you so much!
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Hi everyone;
I hope you all had a very merry Christmas.
Kaption sorry the Pet results and the sore throat. Hang in there.For the last month or so I was having trouble breathing, I couldn't play Tenis nor run. Ride my bike was difficult. CT scan had shown some progression in my lungs in early December. MO switched me to faslodex only. My husband ask the MO in Florida if we could add ibrance. He said that we could try since I have been on ibrance before he was not sure if I would respond.
I got the two first shots a week ago and I started ibrance three days ago and I can feel the improvement in breathing problems. I will try to go for a walk today as I miss my doing exercise
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Thank you all for your support and wealth of information on Faslodex, but it has failed me (after only 6 months) and I'm moving on to Xeloda. Have to say, the se of X are a little scary and I may be in a trial to measure se on various dosages. We'll see. (They often don't take bone mets only people because the lesions are hard to measure.)
Anyway, I had a long phone conversation with my MO yesterday and I'm getting ready to see her for more discussion in about 2 hours. This is my 3rdfail in 3 years. I have to say, I'm getting nervous.
I'm praying all of you have much more success on Faslodex!!!
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Kaption, Bummer! I am sorry to hear that Faslodex has failed you. I have read about many people who have had success with Xeloda for long periods of time. I hope that it is just what you need to stop those mets in their tracks and that the side effects are minimal. I know that having a treatment fail is difficult, but there are other treatments out there, as you know. We all hope that our medications will work forever, but those cancer cells seem to find ways around some treatments for many of us. I wish that doctors could tell in advance what will work for each person - someday. Good luck with Xeloda. Let us know how you are doing.
Big hugs from, Lynne
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Awww Kaption, I am so sorry that it has failed. I have 3 unused boxes of Xeloda in my med kit, I had an allergic reaction to it. I've had an allergic reaction to the last 3 chemo's I have tried. I totally understand the running out of choices concerns.
It's great they are willing to work on getting the right dosage, I have everything crossed you get into the trial and it is successful.
Best of luck.
ps - Just a quick question, has anyone lost a lot of weight on Faslodex? It has been so hot here, so I have been living in loose flowing tunics, and didn't notice until today that I had lost a fair bit of weight. I was weighed about 3 weeks ago before my injections, and I weighed myself today and I have lost 8kgs (about 17.5lbs). I could have done to lose 2 or 3 kgs, (shrugs), but now I look awful
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Kaption, Everything Lynne said and a big, gentle cyber hug too. Just a thought, have you had a biopsy recently? Just wondering if met characteristics might have changed. Also, I see you are HER2+, have you and your mo talked about tx such as Herceptin or Kadcyla that target HER2+? Wishing you stability with few se's on whatever is next.
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I'm so sorry, Kaption. I hope today's onc appt. yields some positivity about switching and going forward. As Lynne said, "X" is a wonder drug for many women, and we hope it will be for you, too. Big hugs to you, and prayers that "X" is just what you need right now. Deanna
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Kaption, that's a bummer. Hope your discussion with your onc went well. Remember that not everyone gets every side-effect of any drug.
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Thank you all so much. The conversation went as I thought. No more Faslodex. I may get into a clinical trial that is looking at dosages of xeloda. I will find out more late next week. I actually don't mind getting a treatment break.
Jobur, good observation on my HER2 status. I was originally barely positive and was on herceptin and perjetta. After some progression they did a biopsy (for a trial) and said I had changed to negative. (I couldn't figure out how to add that info on my profile. Need to try again.)
Thank you for the hugs and support. I'll see many of you on other boards :-)
My best to you all for a healthy and happy 2017!!!
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Kaption - sorry to hear you're going off Faslodex but I'll keep good thoughts for you as you continue onto the next tx - keep in touch and let us know how you are doing. Hugs, S.
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Freya - it's been my experience that some months I lose a few pounds (5 or so) and then put them back on again - also I notice that my appetite isn't what it used to be however, that said, I think your weight loss is quite substantial - you might want to call your onc's office and mention it.
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208sandy, thank you so much for your response. My MO is on holidays at the moment. I ended up going to see my GP yesterday afternoon as the lymph nodes near the clavicle were all swollen and sore and I have been fighting a fever for a few days. I am trying some strong antibiotics and if that doesn't help by Tuesday then on to the next stage of finding out the cause.
I'm not one for worrying so probably put things off for too long at times.
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I went in today for shots number 50 (I think. It's been almost four years). She did a beautiful job of going slow, but for the first time my butt hurts/stings, just sitting here.
The nurse and I also noted that I'm starting to get permanent lumps in my rear. They used to go away in a couple of weeks, but I have the ones from two months ago. She thought it was due to scar tissue and just a lot of damage over the years.
Thoughts? Just bad luck? What do other long-timers think? Is your rear deteriorating? (I should add here that I have plenty of padding) Or did I fail to hydrate and that's the issue?
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pajim, I'm close to 6 years on Faslodex and have lots of scar tissue and permanent lumps as well. I can no longer have one of them on my left side ( too much damage and scar tissue and sciatic nerve issues) so now it's 2 shots on the right.
I'm also getting mine a lot higher and more upper outer quadrant than I use to. My nurse said that is what they do for us long timers. I'm sure you do the usual massage the butt thing and walk, but it's hard to compete with the built up scar tissue. Hope your next set goes well.
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Pajim, I have a lot of scar tissue and seemingly permanent lumps. This is understandable; it's been five and one-half years!
My nurse feels around to discover a site where she thinks she can get the needle in and is giving the injections ever higher.
Long-Timer Tina
P.S. I believe this had nothing whatsoever to do with hydrating.
P.S. 2 The idea of a "deteriorating" rear makes me smile. In terms of padding--if only!
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wow! I was going to pat myself on the shoulder for 3 years on Faslodex. I guess it is too early to celebrate compare with Lindalou, Tina 2 and pajim. You gals are my models
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cling, I say pat yourself on the butt and keep going. You are doing great!!
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Always a pat on the butt. Just not for the first week after the shots. . .
Bottom's up!
Pam
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Hi, Everyone! I see a lot of people that I already know here. I will be starting Faslodex this month, and of course I'm nervous about the shots. I read the good advice at the beginning of the thread. How long of a walk should I take after the shots? I'm a dancer and a little worried about soreness affecting my technique. Should I try to schedule the shots for days I don't dance? I'm also worried because I don't have a lot of real estate, if you know what I mean.
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Hi Shetland! Welcome to the neighborhood. I walk the 8 minutes back to my office and have had few problems. I do have a fair amount of real estate :-)
Think of it this way: They're injecting castor oil into your rear end. You want it to move around rather than hang out in a lump.
I don't see any reason to schedule the shots for days you don't dance, but your experience may vary. Some women get quite sore or have other issues. You should also know that even if you have problems the first time, you may not subsequently. And injecting SLOWLY is the key. 30 seconds+ per side. The label says a minute but if the syringe is warmed up the nurses don't take that long.
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Shetland,
I'm among the Faslodex veterans on this site. I come home from my monthly afternoon jabbings at the oncologist's office, strip off the gauze and tape on both cheeks and right arm, climb into comfy pants and indulge in tortilla chips and hummus. Sometimes I take a nap. I usually cool it for the evening (my spouse fixes me a lovely meal of comfort food), then resume my regular activities the next day. Your routine may vary.
You'll see what feels good. You can do this!
Tina
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Thank you, pajim and Tina. The cancer center campus is very pretty, so I will plan on enjoying a nice walk after the shots. If chemo day can be date time (really it was), then Faslodex day can be nature walk time. Oh dear, I hadn't thought of bulky gauze under clothing. And tape! My skin is sensitive. Uh oh. I'll have to tell the nurse, and also remove it as soon as I can. Glad for the heads-up.
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Shetland, I didn't have any bulky gauze, just a couple of round bandaids. I would walk around for about 20 mins or so afterwards as I then had a couple of hours drive home. Good luck.
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Shetland, I'm allergic to some adhesives, so my nurse applies a small gauze pad and paper tape to stanch any bleeding. It's not bulky. I remove it as soon as I get home.
Tina
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