Faslodex + Pablociclib(Ibrance) treatment combination -
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Hello everyone, I had a PET Monday and my visit today and the results were good. A few areas a bit improved and the rest the same as before. It was huge relief because my markers were way up and they have always been reliable so far so I had myself pretty worked up. I mentioned to onc that I've been hearing it sometimes 5-6 months for this TX to start working. He said "not to start but to see the full effect". SE so far are hot flashes and night sweats, blurry vision. It seems like I need to go up in magnification of reading glasses, but not always. Sort of like there's a film making things blurry. And for two days now my lips are feeling sore. It feels like maybe a cold sore coming on and a bit swollen. Overall very minor and tolerable. Thanks to everyone for the continuing very helpful info on this thread and others.
Amy, I felt the same way when I switched the first time. I was on letrozole for 2 years and it quickly brought my markers to normal and all lesions went dormant. Like Deanna I thought I would go to another easy AI and he wanted me on afinitor which I refused. I took only aromasin for a year which I don't think did very much. I had radiaition to a few spots which brought the numbers down twice but then right back up again. I think I got some benefit from the rads but the aromasin only slowed things down if anything. Now I'm on this TX and it's just as easy as the letrozole. I sleep a lot after the shots though. My progression was also like yours; nothing new but they woke up and became more active. After the rads a bunch more popped up but still only bones and still small.
On this scan I had activity in the left gluteus muscle lol.
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Amy first progression is a shock, isn't it? I'd somehow convinced myself the cancer wasn't ever going to grow, life would be easy, oh well. For me it was like facing mortality again. I wonder whether future progressions get easier?
Saw my onc yesterday. He was jumping up and down he was so thrilled with my TMs. They've come down each month I've been on Ibrance. [I got the impression he'd had one of those days where something bad had happened to every patient] We're doing something that isn't really clinically indicated and he now wants to try it for other patients. I was progressing on Femara/Faslodex but instead of switching treatment we added on. In theory it's not supposed to work, as [in theory] my cancer is resistant to F/F, but lo and behold it IS working.
HLB, happy dance that your scans were good!
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HLB and Pajim,
So glad to hear that you both had good scan results! Joining in the happy dance!!!
Hugs, Amy
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HLB and Pajim - what Amy said - so happy for your good results! Keep 'em coming!
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I'm going for my first Faslodex shots tomorrow. This may be a silly question, but thought better to ask now. Should I have someone go with me or will I be fine driving home after the shots (due to local pain or other immediate effects)?
Thanks, Amy
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Hi Amy, I can only speak for myself, and my experience is limited. I had my first shots last week, and I was fine afterwards. No SEs at all other than the normal "ouch" of getting injections. Good luck tomorrow.
Lynne
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You won't need anyone to go with you. They're really quite easy. Just be sure to read up on the proper way to administer them -- pinned to the top of the Faslodex thread. Most nurses/techs know, but occasionally some of us have gotten one who doesn't, so it's best that you do! Things like being sure the vials are at room temperature, injecting very slowly, and unweighting on the side the shot's being given, and more, all make a big difference in no pain. Also it's best to move around right after them. So if you have much of a drive home, be sure to walk around before you start driving.
Good luck! You'll be fine!
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Amy, you'll be fine. Go for a 7-10 minute walk before you get in the car. And when you smell heavy metal on yourself and your urine later that day don't worry. Be assured they gave you the right stuff.
Seriously, good luck! [Touch the syringes yourself -- make sure they are no colder than room temp]
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So I just had my sixth cycle of shots didn't even hurt a bit yeah! Deanna is right it really depends on the nurse doing it slow and steady and not to cold those are what I noticed to be the biggest factors. So I joined this thread because I'm in Canada and though we have Ibrance I'm on the newer drug Ribociclib/placebo doing well so far..
Wendy
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Pajim, I just wanted to say thanks for telling your story about not rushing to change treatment too soon. It has helped me be calmer and more optimistic as I watch my TMs popping in and out of normal range, and my last two scans sort of ambiguous. Like you, I can tell my onc I feel fine. Congratulations on the dropping TMs with Ibrance!
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So, another dumb (or at least odd) question. I didn't think about it until just now, but I took a pretty bad fall down the stairs a week ago. I'm fine,but still have a huge bruise on the back of my thigh - yellowing in the middle, but still very purple around the edges (by huge, I mean pretty much all of the back of my thigh, and the purple part is at least three inches wide). Will that make them not want me to have the Faslodex or the Ibrance tomorrow? I only ask because of the blood count and bruising issues. I'm guessing not, because it's healing and just needs to be reabsorbed, but I worry about anything that is possible to worry about, so I thought I'd ask. Might be one of those oddball questions that no one knows, but would be interested in any thoughts you veterans might have on it.
Thanks, Amy
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Thank you all for the advice about walking around after the shots, btw. It's possible my nurse will mention it, or it'll be on the info sheet, but I wouldn't have thought of it!
Amy
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Hi girls,
I was glad to log on and see a lot of good news. I have some to add. I was scanned last month after 4 months of Ibrance/Faslodex and the scan showed improvement. One lesion resolved and the others were smaller and less active. I'm still finding the side effects very manageable. I hope the scans continue to get better and hopefully I can stay on this protocol for awhile.
Does anyone get a metallic taste in their mouth after faslo? And my urine smells really bad for a couple of days.
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Metallic taste, check. Lasts an hour or two. Urine smell, check. That one lasts several days.
Shetland Pony, you are welcome. Waiting was hard to do, but one of the other women here had just done it which provided precedent. Once we waited one scan and the cancer wasn't growing like crazy it was easy to wait again.
Kay, nice scans -- congratulations!
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So, I had my first Faslodex shots yesterday morning and my first Ibrance pill last night. So far, so good. Yesterday, I noticed a little wooziness and maybe a very mild bone achiness, similar to with Zometa, and I was a little tired, but that was about it. I was too timid to say anything to the nurse about the administration of the shots (didn't want to appear "difficult"), so I decided to just let them do it this time and see how it went. They did both at once and I think it was a little quicker than folks here say it should be, but aside from a red dot where each shot went in, very mild discomfort during and just enough sensitivity now that I notice it if bumped, it's been fine. I did walk around for a bit afterwords, which may have helped too. So far, no nausea, headaches or any of the other possible side-effects though. I was a little worried about the Ibrance, but so far, so good. Would those usually set in right away, or does it take a day or two (or a few treatments)?
Kay, so happy to hear about your good scan results! Congrats!
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Thanks so much for the warm welcome! Question: does anyone notice any difference in how you feel the week you're off Ibrance? I'm that week now and feeling achy again, but had been pain-free for several weeks before that. I'm trying not to panic that it means anything, and I realize it's highly doubtful that the lack of Ibrance would be causing this that quickly. Still, interested in hearing what people feel those weeks, if anything.
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Seagan, yes I noticed the same thing..thought I was crazy..well I probably am but
....Amie
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I should add that I often get lousy achy for a few days after the Faslodex injections, but I got those 3 weeks ago.
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Hi Kay, Yay for your good scan news! Hope the next one shows even more improvement.
AmyJM, Glad the first shots went so well. I don't think you will notice any se's from Ibrance until you are farther into the cycle, maybe end of week 1, middle of week 2. Is your mo checking your counts weekly or bi-weekly for this 1st cycle? Hope you continue with minimal se's and get great results!
I mainly just feel fatigue during my week off. It seems to be my low point. Then I start feeling better again during my first week back on. Doesn't make sense, but seems that way. Many cycles I have had little to no pain in 3rd week.
Seagan, I'm with you on the lousy achy for a few days after Fas. I get Xgeva then too, but I think it's the Fas.
Hi Amie! Hope you had a good summer. I'll bet it flew by. Are your kids ready to head back to school?
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I, too seem to feel the worst during the week off. Or at least have the most side-effects (tiredness and the sore feet). Glad I'm not the only one.
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As far as the week off... I just started my second year on Faslodex + Ibrance. Seven days off isn't long enough for my counts to rebound sufficiently, so I'm off a few extra days each month, and I've had it go both ways -- sometimes feeling pretty good within a day or two -- especially as the bloating subsides -- and sometimes it takes a few days to start feeling better, especially when I can tell my counts have dipped really low and I'm just exhausted and prone to bleeding. I'm also in an Ibrance group on FB where this question has also come up, and responses seem to be split, although feeling worse is pretty common, probably b'cuz it takes at least that week for our counts to rebound.
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Jobur...Summer went quickly can't believe it is school time already. Emma has been having some issues so I spent lots of summer taking her to various therapies....she has some more testing the end of month, really thinkingredients we will be taking her off chemo protocol number 6..I'm really glad we decided I needed to be home the beginning of the summer not sure how I would have worked out top of all our house healthis issues.
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Thanks Jobur, and in answer to your question, they are checking my counts bi-weekly, even this first cycle.
Amy
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Amie, Sorry to hear Emma is having so many problems. Glad you had the summer off work to deal with medical issues, hope it helped keep the stress down a little. You are an amazing person! Hope you manage to take a few minutes for yourself each day.
AmyJM, Glad they're keeping a close eye on your counts this first cycle. Your arm will get tired of getting poked so often, but it will go to every 4 week if your counts are good. Hang in there!
My last 2 cycles I have been extremely itchy. The back part of my scalp and my hands are driving me crazy. Last month I thought I had gotten into poison ivy, but this month I haven't been outside much so am blaming Ibrance. Anyone else?
Pajim, How are your burning tootsies?
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End of my first week on Ibrance/Faslodex. Jobur, I do get itchy, and my skin is dry, flakey and cracked. I cut back showering to every other day, at night after work. Last night I rubbed apple cider vinegar all over myself before bed, thinking 'it can't hurt, and it does kill germs, so maybe it will help?'
The smell goes away once it dries, although it can come back if you get sweaty. Might not be recommended for people who sleep with a partner.
Not sure what to do about my itchy scalp. So far I've just been "talking to" my symptoms. My acupuncturist (who is also a shamanic healer !) taught me that. I just ask the itchiness or the pain, "Who are you? What do you need to tell me?"
Sometimes the answer is, "We are Side Effects! F*ck you!"
"Get out." I say. Sometimes they do.
I'm also thinking of trying Claritin. Benadryl used to help me when I got hives or other itches. Need to make a note to ask my MO about it.
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nine twelve have you ever tried apricot seed oil. It has B17 in it and is a great moisterizer. Double whammy vitamins and smoother skin and it smells great available at whole foods or Amazon
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Jobur, thanks for asking! My feet are much better. They burn a little in the evenings, but that's all. I'm guessing this is cycle related -- it might get worse again in three weeks. Or maybe not. (one can always hope!)
Meantime I'm putting lotion on them every night and have switched from the stairmaster to the stationary bicycle. One of the ladies on a different thread gave be some tips for managing hand/foot syndrome.
NineTwelve, an antihistamine might work. Give it a try! Can't hurt, might help. I've always had really oily skin and now it's really dry. Someone suggested Goldbond ultra healing and it is really helping with the dry feet. Won't work on the scalp. Is there a high-moisturizing shampoo?
Amy, I hope your blood counts hold on.
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Hello ladies! Hi Pajim, Jobur and Nine Twelve! Checking in after starting round #9 of this combo. I have itchy scalp too. Thought it my be my hairpiece, but maybe not? SE baddie is still fatigue and runny eyes - so taking Claritin. Called yesterday for my PET results, UCLA is snail-mailing them as they offered to fax, but do not email reports! Join the tech world cancer hospitals - my office doesn't even have a fax. lol on my wait to see if I'm stable. Want to hit Germany/Austria for Xmas market cruise. Will be at Sundance in January. Hoping my counts hangs in there - my numbers were good on Thursday. Still working as I love my clients - just not the commute.
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lalady, my UCLA onc posts my scan reports within a day (if she is in the office and not at a conference) on my patient portal. Seems like your onc should do the same for you. I suspect the no fax thing may have more to do with protecting your privacy than lack of techy know how.
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Patient portals are the greatest. The Farber embargos scan reports for a week -- you're supposed to talk with your doctor -- but eventually I get them.
Lalady, I hope the scan reports are awesome!
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