Got My Scan Results: Thanks to all for... - SHARE Metastatic ...

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Got My Scan Results

nstonerocks
nstonerocks

Thanks to all for prayers and good wishes. I just got my scan results. The best news would have been that nothing has changed. Guess I got second best News: no new lesions but some have grown And Onc wants to stop letrozole and start Faslodex. I have read about women on this board who take this. My lesions are in my lungs. Besides this being a progression, I have to go for shots instead of popping a pill. I am pretty calm but once again reminded of what we are dealing with. After my mammo I am going to have a long talk with myself to put this all in perspective.

I also ask my Onc why some doctors don’t order mammograms for mbc. That was a recent topic on this board. She said she orders them to rule out a new primary lesion.

Any info or tips for dealing with these injections welcome. Thanks for being there for me. 🙏 ❤️

47 Replies
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Prays for you that your new medication will arrest those tumors! Remember this is our chronic disease.... ups and downs. New meds on the horizon.

Did your lung nodules ever disappear in the beginning of your treatment. I remember you’ve dealt with this for a long time.

Always love your posts and optimism.

Hi Hope in NJ ( I live in nj too)

Dxd 2004. A lot of the lesions cleared up after Abraxane. I have been stable with the remaining lesions in terms of number. I started Ibrance about 3 years ago when some started to grow with just letrozole. Now going to Faslodex for another slight increase in size of some of them. I don’t grill my Once for exact numbers. Although I am flattered you see me as optimistic, I am actually pretty reactive and prone to anxiety and negativity. Lately my Buddhist studies have really helped calm me. I wish I didn’t have to travel all the way to NYC for these injections but don’t want to let go of my oncologist. She is a real stickler for detail and very proactive. I still work. Glad I can do these injections on Saturdays. Thanks for your support.

I am comforted that you have dealt with this so well for all those years. My first scan after 3 months of treatment is this week and at least I know if there is progression there are many options. I have lung mets and the right side after 3 months still feels tight, although improved and I truly feel much better. I will try not to get too upset if I hear of it.

Dear Ruby

I was a little? Freaked but started on faslodex instead of letrozole to see if that works. I went into the follow up saying that it already is what it is. I was a bit upset but stayed together. There are so many treatment combos. A wise member of this board wrote that she approaches results by wishing to know what has to be known. You feel better. That’s got to mean something. Let us know.

Have the nurse go really slow with the injection. Also, I’m not allergic to tape, but for this I need paper tape. The skin around the injection site reacts with latex, causing burning, itching and pain. Now with paper, no issues. Also with these shots, walk after to move the medicine into your system to avoid tenderness.

Gibbsbet
Gibbsbet
in reply to kkrouse

Yes my nurse gives me heat packs to take with me after Faslodex injections. She and another nurse give the faslodex in two injections since it is so thick.

Sounds like a lot of women are having good results with faslodex. I'm sure you will be one of them. Good luck.

Injections are not bad. If they inject slowly no pain. Good part is I get at the same time as my xgeva and no taking pill every day.

just when you thought that the one good thing about mbc is no more mammograms! i am sorry to hear that, but remember, this is a long game...faslodex is just two butt shots... kind of annoying, but super easy - once a month:) and no side effects except a little pain in your butt! onward! don't dwell on it - dwell on the fact that we have tons of options... dozen more things they can throw at this...

I guess I’m just bummed I didn’t get more time on the letrozole Ibrance combo. But trying to see the positives. Hey my mammo and sono were negative! I think I would have to run to the nearest bar if there was a problem there. Do u think they would ever scan testicles they way they do breasts? I told the tech I wish I could just unscrew them and hand them over. I don’t think she saw the humor in it 😕

I like your sense of humor. I was on faslodex 2014 to 2018. Age 64 also. Drink lots of water after and massage injection site to help absorb. I'm impressed you are still working on ibrance and were on it that long. It is kicking my butt. You got this. Jax

nstonerocks
nstonerocks
in reply to Jaxn

It is kicking my butt. I go home some days too exhausted to do anything. But insurance is great and have nice colleagues. I have to figure out how Medicaid and Ibrance works before I even think of retirement. I will not be taking medical benefits with me. Just got back from very active trip/tour of Ireland. Took everything I had and I skipped some of the worst climbs. Thanks

Ibrance can be exhausting. I am a school nurse so not horribly physical but constant. I am also overweight. So this is (another) wake up call to drop the weight, nix the sugar, meditate and walk every day. I’ll still be on Ibrance. They better hurry up with new targeted therapies. I want to see 70 🌈. What are you on now?

blms
blms
in reply to nstonerocks

Look into intermittent fasting.

nstonerocks
nstonerocks
in reply to blms

Would that be for weight loss or as an internal cleansing?

blms
blms
in reply to nstonerocks

I only weigh 118 pounds and I’m 5’2” and 68 years old. so I don’t do it for weight loss. There has been A lot of research in the last year or so concerning intermittent fasting. Apparently there are several ways to do it. All I do at this point is that I finish my dinner usually around seven or 8 o’clock at night. I don’t eat again at all, except for lemon water and maybe an herbal tea in the evening. Then I don’t eat anything solid until about 16 hours later. I understand that’s difficult for a lot of people their schedules but it works fine for me. Then I tried to eat for about a five hour Timeframe. But there are several ways to do it. I’ll see if I can find a link for you to send you some videos but you might just be able to Google it and find out. There is a good amount of evidence that if your body isn’t working to digest that after a period of time your cells he’ll themselv timeframe. But there are several ways to do it. I’ll see if I can find a link for you to send you some videos but you might just be able to Google it and find out. There is a good amount of evidence that if your body isn’t working to digest that after a period of time your cells begin to heal. I understand that the best work is that if you can fast for 30 hours and at that point that is the best positive cellular activity but I have a try call hello there speaking call man calling you back .

Ibrance and leterzole. I'm in middle cycle 3. So tired. Worked part time on faslodex and xgeva. I want to see 70 too.!

nstonerocks
nstonerocks
in reply to Jaxn

I’m thinking maybe I want more leisure time. I can probably swing it financially if I cut down on travel. The problem is I won’t have health benefits and have to figure out how these expensive drugs get paid.

So let’s make a pack. We’re going for 70 and beyond.!

To everyone

I had a feeling I made a typo. I was dxd 2014 not 2004. Good grief. Mbc out of the box. Having a drink now it’s been a looong day.

Praying for you!

You can do this!

It’s amazing that they can offer so many treatments for us.

Sending you hugs! 💕💕💕

Nstonerocks,

Another bump in the road....stay strong!

I’ve only had the first series of shots — every two weeks for 3 times then monthly. I’ve had no problems except a little pain at the injection site. Good luck and keep laughing. When I had my shots recently I said to the nurse “this gives a whole new meaning to turn the other cheek” but I don’t think she got it.

Ask if you can keep the shots near you or hold then under your armpits to warm them up. Faslodex is like cement. Lots of people recommended that to me. Relax because tighteibg up makes the shots hurt more. I take pain pills before the shots because I get the two faslodex shots and a lupron shot. One time there seemed to be more pain than other times, and they placed warming pads on my bum. It helped a lot. Definitely walk afterwards. I'd take these shots over chemo every time. You've got this!

I've been on Fasodex for almost 5 years now. (Along with Anastazole and Xgeva). The Fasodex shots can be painful, yes make sure they go slowly and that the shot is warmed up to body temp. Sometimes the shots are painful, sometimes not so much. But they beat an infusion anyday! All the best to you.

Good luck with the shots. I do Lupron shots that only cause pain at the injection site. I get they are dropping Letrozle but are they keeping you on Ibrance? Try to see if you can get the shots in NJ. I'm sure there is an annex somewhere that is affiliated with the hospital you are using. You don't need to see the Dr every time you have a shot.

BTW- I'm planning a "55 and Alive party." I encourage everyone to jump on the bandwagon. 65, 75....

All the best

Good morning and prayers from Seattle. I did a google of faslodex; one reputable website mentioned research that the higher dose (500mg) was more effective than the standard dose (250mg). You don't mention your dose, but this is worth mentioning to your onc, as he/she should be aware of this study. Stay with your calm and steady spirit; you are an inspiration to all of us! XO Linda

I am getting the 500. I am a plus size so probably need a bigger dose anyway. Trying to lose weight.

Hi Lashinator

I will still be on Ibrance. I go to NYU and really like my doctor and nurse practitioner. NYU does not have a site in NJ. MSK is all over the place but I don’t want to switch. Luckily I can get the shots on Saturday. Still a bummer but unless I shop around for an oncologist to work w my doctor I am stuck. I just can’t do that right now. Thanks for asking about the Ibrance. When I get input from the women in this board it helps me rethink and clarify what I’m doing.

Shopping around is so time consuming. I get it. Make your Saturdays in NYC fun. I'm in NY too.

I’m just too overextended to take that on. It would be one thing if the hospital had affiliations in NJ. I’ll just lan a nice reward for the long round trip and be grateful for the fact there is a next treatment and I have a good oncologist and good coverage. 🙃

Sounds like a mostly good report. It's always good to get the info. Waiting is the worst.

I've been on Faslodex for several months. The shots aren't too bad. With me, I get half in one side and then the other. It's pretty thick and I encourage them to push it slowly and rub the area after to help it disperse. I was a little sore the next morning, but after a run it felt better. Walking also helps get it out. I have noticed that my urine smelled very medicinal afterwards, kinda like after chemo. This is just my experience though. We are all different.

:-)

xo

Have noticed a stronger smell in urine. Not the smell of urine. Took that as a sign to drink more water.

Thanks Lynn looking back after a nite to sleep on it, it seems to be a mostly good report. Thanks. I will take all the tips I’ve received with me and I’ve before they shoot, ask them if I can warm it up first and ask them to inject it slowly. I don’t run but will take the good advice to walk afterwards and massage injection site. Thanks again!

My treatment was letrozole and faslodex injections after an infusion of zometa, and oral Ibrance. Since the Ibrance is not working do not take it anymore and since the tumors are spreading and growing I no longer will take the injections, by the way, not going to lie, they hurt, but I had no side effects.

What are you on now? Appreciate the heads up about the injections. Sometimes I wonder if I have the psychic energy to handle this but no other options. At least no good ones. I’ll be starting this after I get back from a trip. Hopefully it will work for a while.

Congratulations on your scan results! My dr said we would only do scans going forward. That’s fine for me. I hate the MMG and think w implants that the scan would be more conclusive.

But, if you get other info—please share!

❤️

I had the shots. Have them at the same tine w two nurses. Also make sure they let them sit out at room temp. Other than that no side effects. Good luck.

HiddenThis reply has been deleted
Debdavenpo
Debdavenpo
in reply to Hidden

I always stood up and leaned forward putting my hands on the infusion chair. I just found it better since it was all the pain at once. I also tried to be relaxed as hard as it was lol.

Thanks for the tips. I’m kinda dreading it but at least I know what to expect. Hey at least I have another treatment option. We really have to find the silver linings on this journey.

Yes quite honestly I would pick that over the chemo I have now any day.

When I was first diagnosed I went thru chemo. I have to say shots not bad. If it works it’s all good

Hi Snowcone

My onc said she does mammos and sonos to check for new primary lesions. I don’t have implants but geeze I am pretty good with pain but mashing my breast down to a pancake is nothing I look forward to. But going along with her plan.

Hi I have injection every month and take 125 mg Ibrance. I will have a scan on 9/20 and hopefully it will remain the same or better. We don't have many choices with this damn disease, but we do have our faith to trust and believe in a higher power! I certainly want to live and enjoy life and I do that each and every day with family and friends. If I'm tired, I sleep and when I'm good I'm out with friends and enjoy life! Happiness is a decision. Please don't spend time worrying about tomorrow! Remember that we don't have control over what's to come. Do something nice for someone else and you'll feel better! God bless you!

nstonerocks
nstonerocks
in reply to Klamato

Thanks. You are right and I do try to enjoy myself even if it’s just a good cup of coffee, my pets, a nice meal out. I am much more aware of the smaller blessings in life. I took a lot for granted before BC. And I do think about how all life ebbs and flows. It takes some effort, some days more than others. But I remind myself to slow down and be present 🌈 This disease is quite a teacher.

Klamato
Klamato
in reply to nstonerocks

Great way to think! Sometimes we don't count our blessing enough! There are reasons for everything! Hang in there, my friend!

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