Faslodex Girls Thread
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Thanks so much pajama! I guess that is why we need to wait another month. I guess I'll just have to hang tight and occupy my mind with another project.
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Monday I went to the cancer center to see my doc and discuss options.
Four months ago I had a scan which showed three spots where previously I had been NED. We waited four months to see how "real" the progression was. Last week's scans showed the two main ones still there, third had disappeared and two new ones which may or may not be real.
Onc and my husband, both optimists, read the scans as "basically unchanged". A pessimist could read them as slightly worse. Onc said there are a zillion options but only two we should consider: (1) do nothing; (2) add Ibrance on top of current therapy.
I chose to do nothing except add more Zometa (may switch to Xgeva). Scan again in four months.
The reason I'm writing all this is in case it helps someone else with choices. Back in March when the scan results came back and my oncologist said "meh, wait" I'd have freaked if Susan_02143 hadn't just gone through the same thing. Now it seems totally reasonable. What I do hate is there is no "right" answer.
Then it was off to the infusion room for Faslodex set #30. Nurse I hadn't met before, first time I had real pain with/from the shots. Now I understand when people say the shots are painful. (it's not that I don't have sympathy, really, it's just that I never had direct experience) Yikes!
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Pam,
Many thanks for the update. You sound clear-eyed and clear-headed, and your decision seems eminently sensible. You're so right about our posts helping others with difficult choices. Yours has already proved of value to me; I will tuck it away in my memory bank as another good example of how to proceed with grace when there is no right answer.
Tina
P.S. So now you know. The amount of pain from Faslodex injections seems to be directly related to inexpert/careless/hurried administration. If Astra-Zeneca reps were required to give demos to each clinic and hospital staff, with themselves taking the part of the "patient," this would change very quickly.
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Pam thank you so much for that post. I am in what the onc has called a "holding pattern" basically do nothing although my tumor markers are consistently going up and I have a new lump which upon touch has not really changed in size. I only have mets to the bone and I am freaked that by doing nothing increases my chances of having it spread to soft tissue organs.
My last shots were quick and painless when I received them but the pain the next day was tremendous. I could hardly walk let alone run. But I hate long shots too because I tend to pass out. I guess I need to decide which I prefer
Renee
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Renee, can you lie down for the shots? Might keep you from passing out. To me it would be way better than pain the next day.
Next time I'll remind the nurse in advance to go slow. Usually its not necessary. I figure if they know to warm it up they know to inject slowly.
The "right" answer thing really got me. I had to make this decision -- only the second one I made. First in a long string of them, I'm sure. I like to use evidence, but there is none. Lots of you are so sure when these times come. I had no real idea what to do. Guess its time to give real consideration to what I care about.
We actually had quite the philosophical discussion about when/why to change treatments.
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Pajim - so glad you posted - I am seeing onc on Friday and of course getting my shots - my TM's have been dropping but I have some tumour activity on "other breast" - so we are just "watching" and not changing anything for now - my TMs in fact are very, very low now almost negligible so we know Faslodex is working - will be scanned again late September (I think) - very strange situation I agree but I hate changing treatment so I'm quite happy for now.
As for the delightful "shots" honestly I had to have a word with the charge nurse and ask that a certain nurse not be assigned to me again - both times I had her I ended up "yelping" - she's a perfectly lovely human being but should NEVER be allowed near a needle!!! Sorry you had to find out the hard way....
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Pajim, I do get them laying down now. It's so much better although the longer it takes the more woozy I get. It's all psychosomatic really. I need to get over it. I'm a bit restless this month with the wait and see approach although for me it's my only option right now. I've decided to take on a project to occupy myself. A friend's mother asked me to do photos at her wedding so I'm going to spend the next month becoming a wedding photographer!! LOL. She has no expectations which is good.
Where I get shots there are nurses that refuse to give them because I learned it is apparently hard for them to push the medication out too. Oh boo hoo!!
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Had my Fas and Xgeva shots today by my favorite nurse Mike. He always warmed up the Fas, laid out all supplies neatly, then call me into the shot room. However when he pulled off the Xgeva needle cover, he found out the pharmacy had place a 18 size needle, then he ran out to get the right size needle, ouch! My center has a shot room with 3 nurses rotating among patients. The worst one is the "Supervisor", I guess she handles more papers than needles. Too bad, we could not designate a specific nurse for shots.0
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Today my oncologist looked at my recent scan and smilingly declared my situation "stable." He then turned me over to his nurse for a blood draw from one arm, Faslodex injections in both cheeks and--new today-- a shot of Prolia in the other arm. I just found a little mascot for the occasion and want to share her with you:
Tina
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Cling...Ouch. An 18 gauge needle is standard for the Faslodex preparation and administration. Many change the needle to a 16 gauge. What I have wondered is why the folks who mfg Abraxane ( the taxane preparation) have not promoted the same nanoparticles technique in mfg for the Faslodex. It would be much easier to administer and equal less pain. Funny thing ...my radiologist who read my scan noted that the gluteal had areas of significant contusion.......we could have told him that.! Pegg
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I'm going for my 3rd set of shots tomorrow. I reviewed the must do's and generally helpful tips. My cheeks have been really itchy so I'll try the benedryl and ask the nurse to warm the syringe and slow down as I was quite sore and swollen last time.
For what it's worth, my onc wanted me to try Ibrance with the faslodex but I just heard from him and we are stopping since my WBC counts dropped too low even on the lowest dose. He said he wants to stop especially since the last scan showed increase SUV and not "true progression" which he defines as new mets or an increase in size of existing > than 20%. I'll take his read on it over the RO's (an adorable and very very young intern) who called it progression since it was larger. I guess not > than 20% larger.
Perfect little mascot btw, Tina. Thanks for sharing him with us.
Lisa
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And congrats on the "stable" declaration, Tina!
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Tina, That is priceless... though there should be those few strategically placed needles, if you know what I mean.
Into, I saw your post over on Ibrance, and hope that the Faslodex does you some good. Slow pushes and warmed syringe are really important. I was never itchy, but after 5 years of shots, my backside will never be the same I think. It has been almost three months since my last shots, and I am still a bit sore in several spots.
Back to my Ibrance spots.... just popped in to see how everyone is doing.
*susan*
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Tina..Congratulations on great scan results.. Peggy
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Tina, I'm right there with you, pincushion girl! I mentioned to DH last month after my 3 shots how amazed I am at how quickly we manage to adapt to our circumstances. I don't think I ever had more than 1 or 2 shots in my whole life before bc. Now a monthly blood draw, shot in the arm fat, and 2 in hindquarters is par for the course.
Okay, hope I'm not going to sound like a whiny baby, but is anyone else being tormented with the nature of hot flashes they are having with Fas? They were pesky but tolerable when I was on anastrazole, but now every hottie comes with an all over sweat that is making me miserable, particularly at night. I'm awake every night from 3 to 7, first sweating and throwing off the covers, then freezing and can't get warm as the flash ends and the sweat cools me down. I was never a sweaty person before. Now when I wake at night even my knees feel slimy! Anyone else have this se? Any suggestions? After getting over some nausea during the loading doses, this is the only se that I'm having trouble with.
I agree with others, the pain or lack of pain with the shots themselves seems to have a lot to do with the nurse giving them. In my limited experience it is better to suffer with the shots going in slowly as there is less discomfort later. The one nurse I had administered them rather quickly which felt good at the time but got the lumps and was in pain for a week after that time.
Also wondering, do the nurses purposely give the shots in a slightly different area each time, or does that also just depend on the nurse giving them?
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The shots are administered in a slightly different area each time - guess it stops scar tissue from forming. As for the "Sweats" - they sure aren't like any hot flashes I've ever had - they are freaking debilitating!!! At least I've only gotten them once or twice at night but I get one hell of a one every day just after I have my shower and am fully dressed - talk about a mess - wringing wet hair and clothing and shoes too - just about like getting caught in a thunderstorm - then of course I start to shiver - asked the onc about them this morning and she said "oh, they're just hot flashes" I went through menopause fifteen years ago and I did have flashes but nothing like these - I am hoping they'll start to let up (or not). As for the administration of the shots - if they insert the needle quickly, then slow the injection and remove the needle quickly, everything is fine - when they insert the needle slowly and remove it slowly they hurt like hell - I don't have any really bad reaction the day after but must admit if I am pulling on yoga waist jeans I can feel a little bruised.
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Tina I LOVE IT!! That pic is priceless. Congrats on stable.
Sandy-I had been having over 20 hot flashes a day. It was terrible. I take the lowest dose of Effexor now and they are so much better. This passed winter they were non existent but when the weather gets warmer they creep up a little more. But it is much more manageable.
I think I'll ask the nurse next time to give the shot slower. I never pay attention since I am always just getting upset about the idea of the shot to begin with. I need to grow up a bit. My two year old does better with shots than I do!
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Sandy, good description "sweats" and thank you for letting me know I am not the only one who finds them debilitating. Getting one just after your shower must really suck! Isn't it odd how they hit at about the same time every day? Sure would like to hear an explanation for that. I could just about set my clock by the ones I get at night. I have yet to not be sore for at least 3 days after my shots, but maybe that will get better with time. Or not. Just hoping they are working as pain level has been on the rise the last couple months. My CA15.3 TM is always normal so waiting for scan next week to find out.
Renee, I am in the 20 a day/night range on the hotties/sweats right now. Thank you for mentioning Effexor again, I am going to ask my mo about it. A little antidepressant wouldn't hurt me any either. I'm sorry you have such a bad time with the shots. My favorite onc nurse says there are no woosies (sp?) here! (at the cancer center) I try to take really deep breaths and count while they are giving me the shots, figure when I get between 30 and 45 it should be over! Maybe sounds dumb, but concentrating on breathing has helped me through some of the rough spots. My heart goes out to you. No one who is young like you with a darling little one to care for should have to go through this.
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Yay Tina! Nice scans.
I hate humidity -- start to sweat immediately. the beginning of summer is tough. I get many fewer hot flashes in winter and when I'm dieting. I think it's about keeping the body cool. Or maybe not.
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Hi fanny pack sisters: I have a question about SE. Has anybody on Faslodex and Xgeva ever had abdominal or stomach pains as a SE? I have grade 1 diffuse bone mets and have been on Fas and Xgeva for over a year. No bone pain and minimal SE from the combination. About two months ago when I had a nasty cough spell (lasted for 3 weeks), I started having the dull abdominal pain. I thought it was the muscle aches caused by coughing too much. now, I have been well for over a month, still feel the pain. The CT/bone scan in June show mets stable. I wonder could the abdominal pain be a SE from either Faslodex or Xgeva?0
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Cling - I had a kind of phantom pain in my abdomen about six weeks ago but had a US and nothing showed up - PCP thought it was a pulled muscle - think you should go see PCP or onc as this has dragged on for a month - remember any unusual pain that lasts more than two weeks should be checked out. I'm betting it's a muscle thing. Sending hugs, S.
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Sandy, thank you for your post. I will revisit with my family doctor to check it out. I don't think this pain is related to mets, because my June Bone/CT scans were done at MD Anderson, and I did complain to my MDA onc that I had a nasty cough, and my muscles hurt. I read the SEs for Fas and Xgeva, and abdominal pain is among those listed SEs. However, I never read in this post that anybody actually suffered such symptoms.0
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Cling, I have some minor abdominal issues from XGeva - some mild bloating/gas and and loose stools - but I wouldn't describe it as pain.
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Greetings fellow Fanny Packers,
Just had my 1st PET scan since starting Faslodex in April and it was the best ever since dx! No active mets in spine, scapula, or sternum and those still active in pelvis are much smaller with max SUV dropping from 9+ to 3+. I am thrilled! Also talked with my mo about adding Ibrance if we can get insurance approval and got an rx for Effexor.
Woke up today (after Xgeva and Fas shots yesterday) feeling like someone beat me up in my sleep, but it is much easier to take now that I feel like my tx is working. Shot spots feel fine this time, pain is in shoulder, back, and hip. Makes it hard to do the happy dance, so I will be doing the happy shuffle instead.
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jobur - doing the happy shuffle with you - just recovering from shots last week - so good to see your news - I am being scanned again August 4 (started Faslodex in January) to see if still working - hopeful Ibrance will soon be approved in Canada.
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Excellent news jobur!!! I hope I'm right behind you. hehehehe I got back to the onc on August 4 and although it isn't for a scan they will draw markers. I know I'll be getting a scan sometime between August and Sept though. Time will tell.
I love hearing this good news though because I was feeling a bit down about this treatment and the shots and hearing this def makes me feel optimistic.
Hugs,
Renee
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Shuffle on, jobur! Sweet news!
Tina
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Great news to hear jobur. Joining in on the jobur shuffle and adding a little soft shoe for you
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By now I hope you've moved from the Shuffle to the Macarena, but regardless Hugs and happiness to you! (congratulations. . .)
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Thanks for dancing with me Ladies! Hope I can do the same for you too.
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