Faslodex Girls Thread
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good for you , so happy 😆
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Hello Everyone my name is Aurora and I finished my third cycle of Ibrance/faslodex I've been reading your posts and find them fascinating. I especially want to thank Lindalou for posting the video on how faslodex works very educational. Fortunately I haven't had bad se's from the faslodex or from the Ibrance and I haven't had cramps or radiating pain from the shots fingers crossed it works. Tomorrow I have the shots and start taking the pills tomorrows I also have my office appointment with my oncologist and will see what the tm's are doing. I'm also going to ask for scans as it has been a while.
I've added the thread to my favorites and will stay in tune with you guys. Thank you for being such a supportive group.
Aurora
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Tina, I feel your frustration with the non professional report. I was getting my scans at the University of Tennessee Hospital and I noticed that the reports were not as detailed as the report I had received at a different hospital. I kept getting reports that contradicted the previous reports and vice versa. The scans were being read by a different person and was signed off by a different radiologist each time. This reason coupled with a non caring oncologist...I changed onco and facilities. I told my new onco that I wanted to get my scans read by the same radiologist. My first scan with the new facility showed a bone met that had been there for awhile, and the prior facility never mentioned it. That is just unacceptable!!! Now my scans are read and reported on by the same radiologist....not some tech with a radiologist signing off on a scan they never looked at.
Im happy for you that your report was a good one!!! Have enough ice cream for me please!!
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Shots #3 went well. New, young man RN did a great job.
ANC, WBC, etc. all have bounced back now that I'm off Ibrance and my energy is improved.
But, does anyone know if lymphocytes and monocytes trending up with eosinophils trending down means anything important in our world??
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Hey Kaption. Eosinophils are a type of WBC that are normally seen elevated during an allergic reaction or higher histamine levels. If you have seasonal allergies, they can elevate during a symptom episode. (Also if you have a parasitic infection, which is unlikely) Nothing really BC related. Low is good👍🏻
Debie
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Thanks, Deb. I am having sinus/ ear issues
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Tina, Your post made me laugh and CHEER for your good results.
I had the pleasure of meeting Jobur yesterday. It was great and I think we could have talked for hours! I only wish we lived closer. ( Hi Jo)
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Tina, Too funny! Please don't tell me radiologists have auto correct?! Think of the possibilities! And a big BRAVO! on your great reports!
Hi Aurora! Nice to see you here and glad to hear this tx is going well for you. Good luck to those scans, hope they look like Tina's!
rpoole, I had the same issues with different radiologists reporting different things. Now the same guy reads my PETs every time and they are much more consistent. Of course now I keep wondering if he might miss something someone else would catch!
Hi Linda! I'm suffering a little today after all that walking and 5 hours in the car, but yesterday was soooo nice. Thank you!
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Tina - wonderful news about your results - I am going to have ice cream tonight in your honour!
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Jobur & Linda, how great that you two got together!!! Any photos to share?
So this morning while I was walking, I may have had a small epiphany re. painful Faslodex shots. I had my 12th round of them last Wed., and my bottom is still lumpy and sore on both sides this time, which hasn't happened to me in the past. At first, I thought it was just the fact that it was #12, and maybe after awhile they just hurt more. But this morning I started thinking about something that happened that seemed minor at the time, but maybe isn't. My vials were slow to warm, so the lab tech handed one to me to work on, and as I was trying to assess how fluid it was, I realized there was no air bubble. When I mentioned that to her, she said she had already eliminated them. We both worked on the vials another few minutes, and it was still very hard to tell how liquid they were w/out that air bubble. So I was thinking this a.m., if a tech happens to do that, even though you attempt to warm them, they are probably not warming evenly or nearly as well. She may be one of the few techs in the world who does this, but she was also the one who used to pinch, rather than push or pull the area, until I shared what I had learned here many pages back about proper technique. Anyway -- maybe just something else to watch for if your shots have been painful. Do not let them release that air bubble before they're thoroughly warmed.
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I recently had my 3rd Faslodex shot at the every two weeks schedule. Now I'll wait till August 3 for the next one, then go on once a month.
Anyway, this third shot has really made the constipation bad! I've used myralax, high fiber food and Ducolax twice now. I've had relief a couple of times. Going to try Milk of Magnesia today.
I looked back on this board to early warnings to not let this get away from me and end up in the hospital! Other suggestions? If things aren't better tomorrow and Monday, I'll call the nurse Monday.
I'm hoping this won't be a problem after I get to the once a month schedule.
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Kaption, I have lots of trouble with constipation and Fas. I use all the remedies you have used. When I'm at the last resort like you are now, I take Magnesium Citrate. It is not pleasant but a 10 ounce bottle usually works for me. Try starting with drinking a half bottle first. My nurse is the one who told me to try this. You can get it a Walgreens pharmacy. I prefer the cherry flavored one. It isn't great tasting but it does the trick. You just drink it straight. Milk of Magnesia might help as well. Mag Citrate is often used for colonoscopy prep. Be sure to keep drinking lots and lots of water. Good luck and hope this works for you. If it works then try taking a stool softener either 50mg or 100mg for awhile to help keep it moving. Once a month should be better for you.
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Thank you, Linda. I used Mag citrate when I was first diagnosed Mbc and had a total lock up of my back. I think the spasms plus high level pain medicine (in the hospital) froze my intestines for a while. As you said, it is not pleasant, but works. Thanks for reminding me of it.
Think I'll try Milk of Magnesia today and use that Monday if I'm still in trouble. Thanks!!
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Kaption, is my math off? If you've just had your third set of shots, your next ones should be 28 days out, shouldn't they? Maybe we're saying the same thing, depending on when you "just had" your last ones. As far as constipation, I hope Linda's suggestion gets you past the current discomfort. Then, if you're not already, I've found that drinking two glasses of water with lemon first thing in the a.m., plus two cups a day of matcha green tea, plus a little Greek yogurt and a mostly plant based diet (so plenty of fruit and veggie fiber) works pretty well at keeping those episodes few and far between. Also walking makes a big difference. Thankfully, I'm not on much pain med at the moment, which I know worsens the constipation from Faslodex.
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Deanna, can you recommend any other green tea? I tried matcha and the caffeine was way too much for me. I too eat a lot of veggies and fruit and drink water water water all day long.
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Thanks for the suggestions, Deanna. I'll try the ones I'm not already doing.
My shot schedule has been June 9, June 23, then July 7. Next is August 3. So, had the constipation since the July 7 shots.
I'm a big veggie and fruit eater since I don't eat meat. I do a pretty good job of keeping moving. I did not know about matcha tea. I've had it before, just occasionally.
Thanks!
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Kaption, I hit the stool softener (colace I think is the not generic wal-mart brand) usually about four to six of them and then a half gallon of apple juice. Not advised if your diabetic but it gets things moving. If I'm desperate I'll hit the good ol prune juice but I hate the way that stuff tastes. Good luck getting things moving! I'm having similar problems and hope that it eases up as I get farther from the shots.
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Thanks all. The magnesium citrate did its job, but ugh! Will try some of the stuff listed above. Picked up more myalax too. I don't mind prune juice and often eat a small box of raisins before bed. So, onward!
Thanks!
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Lindalou, I haven't tried Sencha, but it might be worth looking into if you're sensitive to caffeine. Actually, I might try it myself, as I loved being caffeine-free prior to getting a bit addicted to Matcha. http://www.groundgreentea.com/content/decaf-matcha
Also... I don't know anything about the website/source. Just pulled it up to see if decaf Matcha was even available.
And just another quick thought re. constipation. Warm prune juice (I know, it sounds disgusting) is something I've heard recommended by chemo nurses. Not sure it will work if prune juice straight out of the bottle doesn't, but maybe just one more little trick to know about.
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Thanks Deanna. I'll check it out. I too take warm ( yuck) prune juice most every day. Kaption, glad Mag Citrate did the job. Sometimes the big guns are needed to get going again. Yay!!
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I am finally good enough to sit at my computer for awhile. My severe spasms on my lower left back lasted for about 2 months. After the bad experience at PT, I started to go to a chiro. But by the time I had my first adjustment, the spasms were just about gone.
I had delayed my Faslodex 2 more weeks, so it was a 6 week period of being off of the shots. Had them last Friday-9 days ago. Didn't get the spasms, but did get a very deep ache in that area. My chiro knew exactly where to press and the ache went completely away!
But when I arrived home, I got severe nausea and spent the whole rest of the day in bed. Seems that some chiro manipulations can cause nausea. So now I am afraid to go back. I will delay any mroe treatments unless the pains come back.
My back is still fragile, and just a bit ago, I had a brief sharp pain in the area...but only for a few seconds. So I guess I will continue with the shots for a bit. My main chemo Kadcyla, is starting to fail. So I may soon be taken off the Kadcyla and maybe Faslodex in search of something else.
Such fun....
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Venting time...and likely over nothing. Just, you know how a number can push you over the edge.
Recap: I was on Ibrance/let for a year. TMs dropped initially, then rose significantly. Scans were mixed with some progression. (All bone mets)
Started Faslodex first of June and got 3 shots with 2 weeks in between. Will start the monthlies August 3. I went in Monday for xgeva shot (trying to get these all aligned) and labs. I was kind of surprised they ran TMs again, after just doing them 2 weeks ago.
Well, the one 2 weeks ago was down slightly from my last one on Ibrance. Ok. Monday's was the highest EVER!
I know I've read repeatedly that cancer cells dying can raise CEAs, but there is certainly mixed info on that online. Of corse, I'll be following up on this. And, it's just one number, and I haven't had a scan (September). But, just frustrated at this very moment. *sigh*
Thanks for "listening."
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Kaption, my TMs also took a jump last month (after months of a downward decline and a period of stability), so I totally get and share your frustration. I think since you've just gotten loaded up on Faslodex, that could be the issue -- maybe more inflammation or tumor flare as your mbc reacts to the new med. I also heard an interesting story in the Radical Remission audio book I started a few days ago. It was about a man with prostate cancer who actually proved with a food diary that his TMs reacted to what he ate, with the inclusion or elimination of meat, dairy and sugar causing obvious changes in his TMs. So, as disconcerting as it is, I would say if you're not experiencing increased pain -- which I know can happen just worrying about increased TMs, thanks to the mind-body connection! -- try not to worry unless and until there's more of a trend, which I hope there won't be once your body adjusts to Faslodex.
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Everything Ive read on Faslodex said number jumps when starting are not only normal but for the most part expected. I know its hard and frustrating but give it time to level out. Takes a bit after loading for things to even out.
*sent from fone. Not responsible for spelling errors lol
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Thanks Deanna. I'm trying to not get too stressed too soon.
I read that part of Radical Remission too. I haven't eaten meat in 16 years and just recently finally convinced myself to stop dairy. (Love cheese) because I'm finally convinced it makes a big difference in my sinuses! I try to minimize my sugar.
Hope your news turns out good!
I see MO August 3. Scan should be in September. Patience!!!
Thank you.
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I would try not to worry too much. Maybe having them done so soon is not the best idea, since they are loooking at trends and if they would have waited it may have been way down in a month or so. Could be just weird stuff happeneing during the loading doses that will settle down in a short time. I had my first monthy shot yesterday after finishing the 3 loading. I will be curious to see what yesterday's TM shows. Maybe I should have skipped it this time! I am imagining lots of your cancer cells being killed at once and making that number go crazy and in about a month you will have a giant drop!
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Thanks, HLB. Sounds logical and likely to me!! Must be calm,especially at the beginning of the treatment. Prayers for your upcoming good news too !
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New se? The past 3 days I've been hit with sudden waves of nausea. First time was late afternoon, several hours after eating. Yesterday was a little while after a light dinner. And, just now after my normal toast and coffee breakfast. This is very unusual for me.
During the first one I took a nausea pill (which I had on hand from last November's hospital stay and had never opened). Yesterday, I just waited it out and it went away. I sort of have the constipation under control with Myalax and high fiber foods. Just never happens to me (except way back in the Taxotere days-even then all I did was eat a few crackers)
Recap: I've finished my every 2 weeks shots and get the once a month ones starting August 3.
Anyway- others? Is this to be expected?
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Kaption, I've rarely but occasionally had waves of nausea while on Ibrance. They just come out of the blue, as you described, but seem to leave as quickly -- at least for me. I do think that coffee can be the culprit. For some reason, I can't drink it anywhere near the time I take my pill. It's good that you'd noticed what you'd eaten just before it hit. Hopefully that will be helpful in figuring out if it happens with a specific food or something like coffee.
PS ~ If you're not on Ibrance (which I remembered no sooner than I'd written this), it could be the Faslodex for both of us. Since I take them both, sometimes it's hard to know which is actually causing any SE, and I've just assumed it was the Ibrance.
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Thanks, Deanna. Yes, Faslodex only. Never had nausea on Ibrance/let. I would suspect coffee too if the first two hadn't been so late in the day. Oh well, at least I know it doesn't last long.
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