Faslodex + Pablociclib(Ibrance) treatment combination -
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Pajim, I would do whatever the onc says is best as far as when to start the Ibrance again. Hopefully she has gotten some experience with Ibrance by now and communicates with other oncs, and will be able to give good advice.
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Well, interesting day at the cancer center. Normally white count goes up on the week off, right? Well not me. Down 30% from last week. Chest x-ray is fine, cold is getting better but not great. Maybe because I don't have any neutrophils? They tested for influenza, though it won't change anything.
In any case the point is moot. Blood draw in a week to see if I can resume. Meantime try to shake the cold. I'm not that unhappy because I have a trip this weekend (NYC for fun) and a trip next weekend (Chicago for work). Should be peppier than otherwise.
As for the other question, it's up to the individual which treatments she is willing to take and what side-effects she is willing to tolerate. Remember, the docs work for us, not the other way around. This is only my second treatment so I don't know yet the limits of my tolerance. :-) (Though I do know that constant nausea will be a show-stopper. I'll put up with a lot of stuff but not that.)
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Exactly. I want my onc's educated opinion, I want to know my options, and I get to define what quality of life means to me.
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Pam wrote about two schools of thought on PFS and OS. I think I am in the school if it feels good, do it. If it doesn't, don't. Mets are compared to a marathon in contrast to the sprint of earlier stage cancer. But I think it's an obstacle course because we are Constantly confronting new treatment and disease challenges. We are constantly adapting.
Now that I am on hospice,it's all about short-term gains and comforts rather than gambling on some future results that may or May not happen.
Hitting cancer hard can hit us hard also. A softer approach is sometimes appropriate, that is why we work together with our oncologistsfamiliar with both disease and treatments. And why we learn to trust our bodies' wisdom and intuition.
This is an ideal not reality because those obstacles can come hard and fast and we need to respond hard and fast. The soft and slow approach has worked well for me but wouldn't for everyone. I do think it's worth thinking about though.
Healing wishes for all, Stephanie
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Pam, Thank you for taking the time to make your PFS vs OS post. It never occurred to me before how difficult it would be to measure OS long term after progression on the clinical trial in question. People will go to various therapies and it would be next to impossible to correlate the length of their survival to any one of an inevitable series of treatments. Hope you feel good enough to enjoy your travels. Maybe the low counts this week were a blessing in disguise. Don't forget your hand sanitizer and wipes though!
Shetland Pony, I can absolutely testify to Faslodex working well after progressing on an AI. In April 2014 I had slight progression in bone mets and switched from Anastrazole to Faslodex. My next scan in July showed dramatic improvement, highest SUV on PET dropped from 9 to 3 and many previous mets showed no activity. Added Ibrance in August and last PET showed full metabolic response. I barely knew what a shot was before mbc, and I have to admit, the Faslodex shots are always painful for me. But they are over in a matter of minutes and you get used to them. All this is meant to say you can do this tx if/when you need to, and it can be really effective.
ShelbyMarie, Good luck on your rads next week. Are they still giving you your Fas shots in the thigh? You are going through a lot of tx right now, hang in there!
Lalady, Are you on all 4 drugs, Xgeva, Arimidex, Faslodex, and Ibrance? That's a lot of different tx's all at once! Hope your se's diminish as time goes on and April scan brings good results.
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Jobur, thank you so much for your encouraging comments about faslodex.
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Hi.
I wasn't very clear.
Another way of putting it is if MBC is an obstacle course then we need many strategies tools approaches and allies to get through alive and as well as possible.
Because so many of us trained for the sprints and are surprised to find ourselves here we can overlook the less dramatic tried and true approaches.
And example of this is going for NED with aggressive chemotherapy that affects our daily quality of life when we have hormone positive cancer and can achieve stability with less toxicity.
Amy Berman is a good example of someone who has used multiple approaches and strategies that are softer and slower than more aggressive approaches.
Most oncologists have many tricks in their bags, but will take their lead from the patient preference. So it is important to know our options and to be fully informed of all the risks and benefits of different approaches.
Some I have met regret not doing more hard and fast. But a significant minority regret not having more options for getting through the obstacle course of MBC.
Thank you for considering this for yourselves.
Healing wishes, Stephanie
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Hi all - Yes Jobur I am on all 4 right now; ibrance 125, fas shots, xgeva and arimidex. Maybe too many? So glad you are responding to the meds. I had my lung drained today - 480cc in left lung, but the wait between thorocentesis was 4 weeks. Planning 3 weeks next time since I was coughing a lot. My fas shots seem to be working and no SEs, but Ibrance and I are not in synch. Curious how my white cells are fine, hence why I'm still on 125, but red blood has crashed so low I needed a transfusion and may require another. Tonight is my last pill for round 3. I scheduled some fun things this summer, but worried about energy in Spain/Portugal, so planning a cruise where I can rest from time to time as the best option. Also considering upgrading my room as I may need the bathroom more than my sister. lol Shetland you are awesome - we love options, I'm planning for more reading and drug research. Stephanie I smile each time I see your avatar, thank you for shedding more light on our cancer cloud. Pam - please feel better!
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lalady, that is quite a lot of meds you are on. Sorry you are going through your lung drains and red transfusion. Hope you feel better soon.
I have a few issues going on and have been for about one week. I was told to continue 3rd week of Ibrance yesterday, on month 3 after I had WBC check yesterday. I am having pain on left side of throat radiating to ear when I take a deep breath. It doesn't seem like a regular sore throat. Blood when I blow my nose, sporatically.(ph) I'm going to get a call into my oncol. on Monday as they are closed today, Good Friday. I am not running a fever, fortunately. Always something. Has anyone experienced this symptom? I'm a bit worried.
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Thanks naturegirl. I've has on and off nose bleeds on Ibrance - onc says its when platelets slip. But you should speak with onc on Monday. No fever is good, but pain radiating from throat to ear sounds rough. Weren't we on same Ibrance cycle and then you had to wait? I have my week off starting today.
Just watered all my roses for Good Friday. Spring is pretty nice on the marina. Pam - wishing you fun on your trips and time off, hope neutrophils improve soon. Ladies - please have a painfree weekend. 0 -
naturegirl, I actually have had similar mild sore throats that radiated into my left ear during a couple of early Ibrance cycles. I guess at the time I just chalked it off to a slight sore throat that had moved into my ear canal due to low counts. But no fever, and thankfully it didn't last long -- maybe a couple of days -- or get worse.
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Good news, my blood work rebounded but onc still lowering the dosage of Ibrance. Does anyone know if the combination of Fas + Ibrance is as effective, even with the lower dosage? Just worried about reoccurrence.
Amy
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jobur, hi, yes. Got them yesterday. Tried a new spot on side of thigh instead of on top. Walking is much easier today 😁
Yeah, lots of treatment right now but hopefully it's only temporary then back to the distance run!
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Hi lalady, yes, we started at the same time. I had to wait two weeks rather than three on first cycle after the three week period, and again on the second cycle, waiting two weeks after the third week to began next cycle. I'm on cycle three and on my third week. It will be interesting to see if I will once again have to stay off Ibrance two weeks rather than the protocol one. My oncol. did say he may reduce my dosage for next round. Bet your roses are beautiful! I worked out in the garden today since the weather was beautiful!
In regards to my new ailment, what stays behind my mind is necrosis I got while taking Xgeva and I think I was on Letrozole and Afinitor at that point as well back in 2014. I started with mouth pain on and off during the year, told my oncol, went to my dentist, and neither one knew what was going on. By late that summer I saw my dentist again. He referred me to an oral surgeon. They kept putting me on antibiotics and it didn't help. By October of 2014, I started with nose bleed when I blew my nose, after a week of that, I began smelling a foul odor. I went back to my oral surgeon by November only to discover I had a bone rotting in the roof of my mouth. It was terrible. He told me it was a good thing I went in when I did as it could have gone to my brain. I tried to do a little research on Ibrance/Faslodex and side effects this a.m. to see if any necrosis may be a side effect. Couldn't find anything. I took my Faslodex shot yesterday and told them what happened to me back in 2014 with necrosis of the roof of my mouth. One of the nurses said I was one of the 1%. Imagine that.
Thanks dlb for your response. I'm hoping this goes away as did yours but I'm somewhat leery.
Hi Amy,
Glad your WBC rebounded. I'm wondering the same thing with regard to a lower dosage as that, I think, is where I'm headed. I don't think a study was done with lower dosages but posed that question here in the past with no response.
Hang in there Shelby.
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Hi, I will be joining this thread. I had my first dose of Faslodex today. Waiting on Ibrance approval but should be on that in about two weeks. I will read this thread in more detail. I've only skimmed it so far. My big question is......Ibrance? Is it a chemo? The doc mentioned it can tank your blood counts, but I didn't think it was technically a chemo drug. Thanks for your information and advice.
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Kay, technically Ibrance is not a chemo, which kills all fast-growing cells. It's a targeted therapy, specifically a CDK4/6 inhibitor. It works by targeting the production of molecules known as cyclin-dependent kinases (CDKs) 4 and 6, involved in promoting the growth of cancer cells. That said, there can be some chemo-like SEs associated with it, such as low white counts, extreme tiredness, and thinning hair. Also, because it is a potent med, keeping it away from children and also disposing of it needs to be handled as carefully as you would a chemo med, so pharmacies frequently put a sticker on the bottle referring to it as a chemotherapy agent, which adds to the confusion. I think how someone reacts to it might also depend on if they've done chemo in the past, in which case, it doesn't seem nearly as bad as chemo -- at least not to me.
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Yikes to the mouth necrosis Naturegirl. lucky 1% oy, my hair thinning is lucky 22%, not counting majority of us with fatigue and dropping neutrophils. Hoping you get through 3rd round ok - then maybe go to lower dose? I'm enjoying some sunshine, getting roses ready for Easter brunch at the Harbour bay club. I had my halo hair washed and curled today, along with false eyelashes since Ibrance killed mine. It may not technically be "chemo", but has many of the same effects for some of us. Hi Kayrnic - welcome to our club. Hope your Ibrance box arrives soon and you are SE free. Make sure to look into Pfizer $10 copay program. What were you on before fas shots? Lots of savvy ladies here to help guide you.
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lalady, I too am on all the meds you are, but instead od Atimidex... I take letrozole. Is was actually my suggestion to my onco. I told her I wanted to take it bc I heard it can take 3 months for fosladex to start working. She said it was ok with her if I could handle all the side effects. But my only side effect was fatigue and that comes with all the drugs. I was thinking today If my next scans are good...i will not know which drug is helping. So I guess I will stay on all of them until its time to change. Do you have any other side effects will your drugs? Other than the low wbc?
Robin
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Hi rpoole - my SE's have been hair loss on round 1, low RBC (oddly not WBC) requiring a transfusion after round 1, runny eyes, bloody nose (which stopped on round 3) and fatigue. I'm still working full time. Hoping scans in April provide some insight as to how combo is working or not. I do feel more limber, despite needing my left lung drained every 3 weeks or so. No major pain, and thankfully no pain meds. I see you were on arimidex - why the switch to letrozole? My onc said fas shots can take 4-5 rounds to be effective. So hoping they are as I'd like to toss the ibrance/switch to lower dose. Just my thoughts about that expensive little bottle. My insurance is paying 100% of it since it was approved, this month's bill from UCLA was Ibrance 125; $7,200.00, plan discount $1,634.40, ins paid $6,026.60, fas shots; $4,450.00, plan discount $2,910.72, ins paid $2,815.60. Wowser I have to keep working! Hope you have a nice Easter in TN! My family are from Alexandria, VA originally.
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lalady1, I was on tamoxifen for two years 2012-2014, then had slight progression so we switched to arimidex. Been on that since June of 2014. But, scan this week showed more significant progression so oncologist said on to faslodex/ibrance combo. A couple of other questions if you guys have time to answer......
1) how many "loading" doses do you do of faslodex before going to the monthly doses?
2) what is the typical cycle for ibrance? three weeks on and one off? Or does it vary?
3) what are the most typical side effects of the ibrance and any tricks for dealing with them?
4) has anyone experienced weight gain on either med?
Thanks for the warm welcome!
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Hi, Kay ~ All good questions... (1) After dose #1, you'll get a dose at Day 14, then Day 28, then monthly from there. In other words, you get 1 extra in the first month. The rationale for that it's to get us up to the optimum circulating amount sooner. (2) Ibrance is 21 days on (21 pills in a month's supply); then 7 days off. Your granulocytes need to be @ 1,000 or more to start the next cycle. Everyone's a bit different, but I typically need to wait another 4 or 5 days to be sure mine come up enough. When I test on or around Day 28 -- when I get my Faslodex -- I'm usually at 800 or 900, but everyone is different. (3) SEs vary. My worst ones are fatigue that for me is more like a malaise -- not tired so much as lacking energy; bloating & gas; and some hair thinning -- not enough to be noticeable to others, but what looks like a lot to me in my brush and on my clothes. Those have been the most bothersome to me. (4) Some women do report weight gain and weight loss too. I haven't had weight gain per se, but I am now the not-so-happy owner of a much "thicker" mid section -- something I never had, even on Anastrozole. Yoga pants have become my go-to wear vs. jeans, which may or may not be comfortable on any given day.
Hope this helps! My only other advice is don't over anticipate it! Yes, there are some potentially concerning SEs you should know about in case they happen to you, mostly so you will know it's due to Ibrance. But it seems to me like some women take their first pill and literally wait, expecting to experience many SEs immediately. For most of us, that just doesn't happen.
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Hi Kay,
Since Deanna answered the loading dosage for Faslodex so well, I'll tell you about my experiences. Just noticed thinning hair on the top of my head but no one else can. My weight has continued to drop. I started Faslodex in October and finally got approval for Ibrance in January. Since then I'm done at least 30 pounds, maybe more as I'm not sure where I was weight wise in October.
My WBC always tanks as does my ANC therefore my Ibrance vacation is extended by a few days. I landed in the hospital in February when I contracted cellulitis in my lymphedema arm. My body couldn't fight the infection on its own so in the hospital I went for three days on IV antibiotics.
My WBC never fully rebounds but it improves. My onc is reducing my dosage this next time. I'm currently on break.
Good luck to you. If possible, try to stay away from crowds. I'm a wedding planner which makes avoiding crowds impossible. In fact two days before cellulitis, I had a 200 person wedding. While opening a plastic container I cut my finger on my lymphedema arm. That started the perfect storm of events. The good news was, I canceled my pilgrimage to Israel plans at the last minute. I had a feeling I shouldn't go so I canceled. If I had gone, I would have spent some of the trip in a hospital in Israel. Trust your intuitions ladies.
I hope Ibrance is good to you.
Amy
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Hi Kay - where was the progression on arimidex? Spine? Ibrance comes in 3 doses; 125mg, 100mg and 75mg and Pfizer offers a $10 copay program. Please look into that to save $. My onc starts everyone out on #125; unless your WBC count drops, you stay there. He was part of the study at UCLA. Most ladies see drop in neutrophils and WBC (along with fatigue), my WBC have been ok, but RBC once dropped low enough to require transfusion. As Deanna explained Ibrance is a 28 day cycle; 21 days on, 7 days off. If your blood counts are not good, you may get postponed. I'm starting cycle 4 on Thursday, no postponements so far. I get fas shots same day (one in each butt cheek) at start of Ibrance cycle (every 4 weeks). Plus added Xgeva to help with bone. Your onc may consider that too. 22% of women experience hair loss, so be prepared. I bought a halo fall to help my hair look normal. Also wearing false eyelashes since Ibrance killed mine. Weight loss/gain happens to some - I lost a little weight. My onc says avoid salad bars as they are breeding ground for bacteria and avoid sushi or raw fish. So far I have not been sick, other than lung drains (my cancer is in left lung and sternum). Also using Essie "grow stronger" base coat on nails due to breaking during cycle 2. Hard for me to lose my long hair and nails, so I didn't. Stay positive! We are here for you.
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That "middle thickened up in a flash"? That's Faslodex. Happened to me after the third set of shots. Overnight I lost my waistline. I freaked out. They were so worried they did an untrasound but it turned out to be nothing.
Kay, I gained about 15 pounds the first year on Faslodex. I say that 10 was the Fas and 5 was me being lazy. But see paragraph above.
I fully expect to lose weight on Ibrance. It's definitely an appetite suppressant for me.
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My progression was one spot on sternum and two on pelvis. Arimidex kept my two spine spots and one pelvis spot stable for a year and 9 months. I am 3 days post faslodex initial dose, a bit tired and some harsh diarrhea today. I hope for some weight loss because all of the other drugs have made me gain:( So I have plenty of pounds to spare. Anyone experience thirst/dehydration? I am really thirsty today too.
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kayrnic, When I had my first two doses I had some harsh dio too but it has pretty much stopped by round 4. Now it seems I get a bit constipated instead so try and hydrate hydrate hydrate. I seem to be putting ON weight with this drug but maybe stress eating is to blame?
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I think any of these menopause-inducing and/or anti-estrogen treatments tend to give us a spare tire, whether or not we gain weight. Blech. All I can think of is buy new jeans and carry on.
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lalady, my cancer is also in my sternum and lungs diagnosed in November 2012, I'm sure before that date but it wasn't until Nov. 2012 that it was discovered and confirmed, and that was after I pursued the issue as my sternum was severely swollen and I was encountering pain on and off the whole year of 2012(misdiagnosis of Costochondritis) until Stage IV diagnosis. lalady, what prompted draining periodically of your lungs? Symptoms?
Newbies, remember to stay hydrated, particularly the day before, day of and day after Faslodex shots. Also walk as long as possible right after shots as that helps Faslodex circulate in your bloodstream. Although I did not gain too much weight from taking Faslodex only(since beginning Feb. 2015) I really started to put the lbs. once I began Ibrance/Faslodex combination, approx. 12-15 lbs. in total.
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Lalady, wow still working full time!! You go girl!! I had slight progression on Arimidex, so the onco I had at the time put me on lettozole/Ibrance. I changed onco and my new onco wanted to add faslodex because Letrozole is the sister to Arimidex and she was thinking....if the Arimidex failed then The letrozole would fail as well. But I disagree with that. Maybe I'm wrong but I have read a lot and have seen women who failed Arimidex to go on to do great on letrozole. Prayers your next scans are great and that this combo is working well for you!
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Hello All,
I'm only about 1/2 way into my first round Faslodex and Ibrance. I progressed on Arimidex and Aromasin both (well tumor markers continue to go up, but scans clear) so this is my new treatment. My question is: do your side effects seem cumulative or was round 1 about the same as subsequent months? I've been on short term disability since mid-February and I'm feeling pretty good and want to go back to work, but don't want to be too hasty. Friday is day 14 and I will have a CBC then.
Wishing everyone a wonderful day.
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