Faslodex + Pablociclib(Ibrance) treatment combination -
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LivinAZ - Some people feel worse (fatigue, nausea) on their week off. I often feel my best on my first two weeks back on Ibrance. Although this week, the third week on Ibrance, I am feeling pretty good. Who knows? I am at a loss for an explanation, but when the side effects present is all over the map.
My complementary doc with 3 years experience with Ibrance, expressed surprise that I thought the side effects from Ibrance were cyclical, increasing over the 3 weeks on this combo, improving the week off. He said he had not seen cyclical side effects.
A lot of the side effects are from the hormone suppression and therefore would never follow the ibrance dosing cycle.
Finally, you may be sick. The nausea may not be from the treatment.
My point is that it's hard to pin down why we feel these side effects. My cure for everything is a brisk 20 minute walk (as you already know
). My theory is that it clears whatever is causing the nausea ... basically a detox. Sauna's help for that reason too. You might try it. >Z<
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For those who had platelets drop how long did it take to go back up? It will only be a little over three days when MO wants to check them again.
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Dianarose, My platelets usually bounce back within a week now although during my first cycle, when they dropped to 68, it took 2 weeks. I was dropped to 100 mg after week 2, and I am sure that helped since they don't drop as much now. Since your MO is retesting so soon, Your MO might be checking to make sure that your platelets aren't still dropping as well as if they are rebounding. My neutrophils are the things that are more of a problem for me, and there is no real pattern to how soon they come back or how low they go. Everyone reacts differently. I hope you get good news tomorrow and can start back on Ibrance next week.
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50's girl- thanks for the info. My MO hasn't refilled my prescription yet so I am wondering if she will be dropping my dose. My neutrophils were 2.5. Not sure what the normal range is. Hope you were able to get outside yesterday to enjoy the great weather we had. Easter is supposed to be in the 70's. Seemed weird to be looking at snow in the back yard and it be 80 degrees out.
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Well, they decided that I'd only have to pay $38.50 and the problem with the state has been solved so hopefully things will go more smoothly now. I got my Ibrance but have to wait to start the cycle until my wbc comes back up. I have a blood draw scheduled for today. My tumor markers had almost doubled again from 1700 to over 3000, so he's not sure if Ibrance is working but we're going to wait for a month and see what happens. Z do you have a source for the TMs going up being dying cancer cells? If that's true then maybe it's just working super well with me and my liver function tests had gone back to normal.
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Good morning everyone. I haven't posted on here since first signing up many months ago but with all the chatter lately I decided to chime in. I have just started my 7th round of the combo and I've been very pleased with the lack of serious side effects and the progress made on shrinking my tumors. Of course white blood cells, ANC and platelets have been dropping consistently but finally after 6 months o f that (and coming very close to having my dose reduced) last labs showed a nice rise in those numbers. Of course, not even close to normal but I'm happy they didn't continue to go down. Faslodex shots don't bother me any worse than any other shot in the butt! Minor side effects from the Ibrance include very dry hands and feet, a few minor sores in my mouth, a little bleeding from my nose and gums and a little tired. Having had traditional chemotherapy (with the addition of that nasty Neulasta with the second chemo treatments ) twice, these side effects are a piece of cake! And to top it off PET scan after 5 rounds fas/ibrance showed all the small tumors in my liver were gone and the big one had shrunk by half. We were just hoping the tumors hadn't grown or spread to another area - talk about happy! We are just hoping for continuation of all of the above!
Love and hugs to you all and Happy Easter. We all have our own crosses to bear and try to do it bravely and strongly!
Amy
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Amy, WAHOO!
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cive - I could not, in the brief moment I had this morning, find a reference specific to taxol. I find more results for hormonal treatments and other chemos and other types of cancer. However, in general, tumors can get bigger on scans and spit out more antigens as they respond to hormonal treatments or chemo. Basically, if the drug is working well, a big chunk of tissue is dying and falling apart and the bits are getting into the blood stream. This would be the case with Taxol and MBC as with any other setting.
You can google cancer flare response or chemo flare reaction. One of my oncs seemed to feel it was pretty common and cautioned patience during the first few months on any treatment. Once you have been on a treatment 4-6 months, a flare is unlikely and cancer markers are going to be more reliable.
Of course if the drug is not working and the cancer is advancing, that will also cause TM's to rise and tumors to become more visible on scans. The diagnostic tools we have are very weak.
>Z<
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Had my appointment today at the cancer center. Platelets went up 14points in 3 days 👍. MO wants to put me on the 100 instigate the 125 so I will start that cycle in a week. So happy she's keeping me on it
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Dianarose, WOOHOO. As I mentioned earlier, my dose was reduced to 100 mg after one cycle. I had scans a few months later, and my liver mets were much less visible, and my bone mets were stable. Obviously, that lower dose can be effective. I hope you see fantastic results.
Lynne
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Hallelujah! Great news, Dianarose!!
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Whoo-Hoo Pajim- what remarkable bump in your neutrophils- well, I'm going to run all over the place before the next blood draw and try it out!! Many thanks for the tip!!!
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hi. Can low platelets cause nausea? This is my second cycle so we r not sure it's working yet as I've had one TM count and no scan yet. I did get some dronabinol for nausea and I swear it's making me feel worse. I don't see Dr until next week but I'm afraid this crap is spreading all over, it's probably not but you know how it is. Happy bunny day!!
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Lvin - I've been nauseous for 3 months now. Still trying to figure out whether it is Ibrance/Letrozol or one of the many supplements I take, but I haven't progressed over that period. Nausea is not usually a sign of progression, but it is a common side effect of these drugs. I hope you feel better, but I wouldn't worry about progression.
Hang in there. I hope your dog is getting lots of walks. I do feel that exercise clears metabolites and generally improves these side effects.
>Z<
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thanks z. I just hate nausea. Ugh. Especially out here in AZ now that it's getting in the 90s. Matt's it hard to get outside so much. Time to hit the gym! It makes me feel better and less worried reading ur post, thanks. 😂
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Having trouble feeling ok. One month after stage 4 diagnosis I started treatment today.
I had a falsodex injection which was embarrassing and took forever (took long enough for me to find out what her 3 boys are doing). I am waiting for the Ibrance to arrive.
Oncologist is holding off on radiation on my spine. My MRI shows so much spine damage from arthritis not sure if pain is mechanical or cancer related.
Seems my bones are full of cancer. My oncologist says that the fact that my blood work is normal and I am relatively healthy is bizarre. She says I must have functioning bone marrow somewhere.
Really not sure how to cope with the stress of diagnosis
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Hello everyone, I haven't been around for awhile but I wanted to let you know something my onc said yesterday. Apparently there was some kind of study with ribociclib, an aromatase inhibitor, and afinitor. He said when it's time for me to switch it might be to that. I already refused afinitor once but for this the dose would be 2.5 mg, so I said that would certainly be worth trying.
My last scan was in Dec and showed significant response to this treatment. I have been on it a little over a year now and feel fine except sleeping a lot and hair loss. My ca 27-29 has never gone down on this treatment though. I stopped looking at them due to the anxiety of it. Last time I looked was a few months ago and it was 725. Probably at least 1000 now. Also, my counts are never low.
Happy summer to you all!
Heidi
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Ladies, a question for you. Do you have standing instructions from your oncologist of what to do if you find yourself with a fever? What are those instructions?
I ask because I didn't. Spiked a couple of fevers this week and remembered from 10 years ago that you're supposed to tell someone. So I e-mailed my onc this morning. Of course they dragged me in for blood work, etc. The oddest thing was the nurse saying to me "if you'd gone to the ER they would have admitted you to the hospital." All I could think was "why on earth would I go to the ER, I don't feel sick" [ibuprofen had been taking care of the fever which came and went anyway]
So I am wondering if I was off my rocker and did not appreciate the seriousness of some situation I didn't know was serious. Let me say that if 2 advil hadn't taken care of the fever I would have called immediately.
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good question. Discussed this with my sister tonight actually. I figure most everything is an SE or life. I would get in touch about a fever, like you did but I wouldn't go to ER. Germs!
Besides mine is little more than a bandsid station. The big university hospital is where my MO is. I really have no desire to ever be an inpatient there again. Besides you didn't feel sick.
Guess it's a question I better ask my MO too. Thanks for asking. Be interesting to see the answers.
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My MO told me to contact her with any fever 100.5 and over
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Pam, the commonly quoted guideline is that a fever of 101.5 needs to be reported to your onc who may want you to go to the ER. The concern is that if the source of your fever is a hidden infection, it can very quickly spiral out of control when our immune systems are compromised. It"s a serious concern with Ibrance.
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dlb823, yes I know all that. But if the cultures they took yesterday actually grow anything I'd be astounded. I've been told that out of 10 people they admit for being "hot and low", only one has an infection. Though those infections can be doozies. Better to treat 10 people to avoid a nasty.
It feels in someway like my onc and I had a disconnect. Next time I start a new med I'm going to ask for the rules. If everyone's rules are 'call in' that's different from 'head to the ER'.
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Hi Pam, My orders are definitely to call the MO's office, not go to ER, if temperature is over 100.5. That is not to say that my MO wouldn't send me to the ER, of course. I did once report during an office visit that I had had a fever of 101 a day earlier but that it had only lasted a few hours. I still remember the look I got from my onc as he stared at me over his glasses and said, "And what are you supposed to do if you temperature is over 100.5?" I told him I was supposed to call, and he said that he was glad that I at least knew what I was supposed to do. I was given a mini-lecture about why it was important. Now he light-heartedly reminds me of the rule each time I see him. I can tell you that if I ever have a fever again, I will call the office. Would I go to the ER? Not just for the fever unless directed to do so by his office. I have to add that I did get a set of oral and written instructions, including that rule, when I began this treatment plan. How are you feeling?
Lynn
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I think where the ER comes in is that many times on a weekend or late at night that's the safest default. And interesting about 1 in 10. From annecdotal reports in several mbc FB groups, I would have thought it was considerably higher.
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The 1/10 I got was from a resident at a good-sized hospital here. It's not literature-based. And likely includes all sorts of cancers including early stage. For people like us could be considerably higher. I have no idea. Truth be told I hope I never find out.
Right now I'm struggling with the third cycle of A/A/Ibrance. Got mouth sores for the first time (ugh), and recurrent fevers. Every 12 hours in fact. Not to mention the lack of appetite and the constipation. Right now I'm off all [cancer] drugs and on oral levofloxacin until Monday. Hoping the mouth sores will heal up soon. (All this sounds worse than it actually feels. 400mg ibuprofen and I'm good to go)
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Wow, Pam, you are amazing. The recurrent fevers alone would get me down. It does sound like you Would would feel miserable, So I am glad that you aren't feeling too bad and that the ibuprofen is helping. Do you know if many others on the clinical trial have had similar experiences? Will you be able to go right back onto the medications once you get over this big bump in the road? I hope you feel better soon and that those mouth sores heal quickly.
Hugs, Lynne.
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Hugs pajim. Thinking of you.
Fever kills cancer, so probably helping hold things back while you are off treatment.
>Z<
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I appreciate the hugs. Sometimes I'm wondering if I've taken a step down the path. You know, the one where you're only slightly off normal but it becomes the new normal? Then 10 steps later you're in a place you would have never put up with at the beginning.
Tomorrow I go for blood work [again]. Pincushion, me! If ANC>1 can restart Ibrance. Need all the mouth sores to heal up to start Afinitor again (?) I'd guess at a lower dose. Cycle 4 here we come!
Two mouth sores have healed -- one to go. And whilst I still get warm, not over 100 degrees in the last two days. My immune system is just wonky this month. Maybe it's trying to kill the cancer. Would be great if it succeeded! Or maybe I do have some kind of infection and levo is killing it off.
There don't seem to be too many others on this sorta-private trial I'm in. At least not that the research nurse is willing to say. One of the other nurses told me they had to hold drugs for someone else due to bad blood counts. I'm guessing this triple combo may be a non-starter in the long-term.. One of the ladies on the board who is on the sister combination is already out of the trial. The other is doing pretty well.
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So sorry about those nasty SEs, Pam. In addition to sending you a hug, I also wanted to mention that someone in one of my FB mbc groups recently mentioned finally seeing her dentist about out of control mouth sores from Ibrance. Her case is one of the worst I've ever heard of, but she mentioned something called Debacter giving her immediate pain relief and healing when nothing else had worked. She said it's sulfuric acid and "burns like hell" for 10 to 20 seconds, but then the pain subsides. Just thought I'd pass this along for you and anyone else who might be interested.
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may I ask what Afinitor is? You take it along with the Ibrance /Faslodex combo? Hadn't heard of it until just lately on here. As far as mouth sores the last time I was doing regular chemotherapy I had them bad and got great relief from a liquid you swished around called Mugard. It was like novicaine and numbed your mouth all over and no burn! Only thing was my insurance wouldn't pay for it and it was very expensive, like $75 for maybe 6 or 8 ounces. However, my oncologist's office gave me my first bottle free so my point is make sure you tell them everything that's bothering you - they may have something they can give you!
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