Ibrance (Palbociclib)
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Deanna, Thanks for the prayers! This disease in very unpredictable!!! At the end of May I was celebrating my awesome results with Ibrance/Faslodex and now 5 short months later....my disappointment is so bad. I had hoped I would be one of the lucky ones that could stay on the protocol for years. I am however grateful for Ibrance & Faslodex for killing my lung mets. This scan on Monday showed that my lung mets were still gone. I do have some scar tissue but there is no SUV uptake. I just don't understand these drugs working on some mets but not others. My oncologist said I have heterogeneous tumors. That really freaks me out!!
Claire, I was on 125 the entire time for 8 months. This combo started breaking up my lung mets within 6 weeks, so I though this was going to be the combo for me. With that said, It did take care of my lung mets. I had 4 small nodules with the largest measuring 1cm and numerous mets scattered throughout both lungs and now all gone!! So this combo was great on my lung mets and I pray it will kick yours to the curb. My oncologist warned me about the hand/foot syndrome and told me to buy miracle foot only sold at Walgreens. How long were you on Xeloda and can you give me any tips. How much do you have to eat with each dose? My oncologist also told me that most people do not get low counts. Is this true? Safe travels!!
Thanks ladies for you kindness and support! I will check back ofter to see how every one is doing.
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Mason...you mentioned Duke Cancer Center...what city are you...Duke is not too far from me...hopefully no dental problems, but you never know. Thanks0
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Sorry to hear about the *&^$#@ tooth. I would have the same concerns. The only piece of additional advice I can think of is to make sure that your absolute neutrophil count is over 1000, if not higher. Your MO should know this.
I am guilty of being a lurker here. I follow along faithfully and would like to be more active. I have benefitted greatly from this forum. I am currently on my 6th cycle of Ibrance/letrozole/Xgeva. I had a strong response early on and have generally felt very well. I have an excellent MO/PhD here in Southern Maine. He recently returned from a conference at his "alma mater" Dana Farber exuding optimism. He feels completely confident that many more options will be available in the very near future for all of us.
I love you all as sisters, I hold you all in the light each day, and I applaud your courage and strength.
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I am posting a reply to my own post to see if my info will update!
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Ignore this! hopefully DX and RX updated!
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Nice to meet you MJHJAN1014. I am interested in how you responded, exactly, to the Ibrance. Also, I would be curious if your MO had a favorite front runner or two as far as the treatments in the pipeline.
>Z<
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Hello all,
I have been on Ibrance for six months now. I have yet to go a cycle of three weeks on and one week off. My ANC/WBC count is always too low to start again after the week off, needing to stretch it to two, even three weeks before resuming it. My question is how will I know if it is working if I can never do a therapeutic dose? I have gone from 100 mg to 75 mg with the same results.
If anyone has been in this situation, please let me know how it was handled.
Thank you, Melanie
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Hi, Mel ~ I consistently have to wait approximately 2 weeks between cycles for my counts to rebound. My onc recommended doing this -- waiting a few extra days -- in lieu of a dose reduction, and it's always seemed to work out fine.
As far as how you know if it's working, most of our oncs go by scans. Have you had one since you've been on your current regimen?
And why did you go down to 75 mg? Was that because your counts weren't rebounding at a higher dose?
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Hi dlb, thanks for the response. I was switched to the lower dose based solely on low counts, not that they weren't rebounding.
I have not had a scan since I started. One has been ordered, I am just waiting for insurance approval.
My TM's are rising after a nice decrease of 40points within the first 6 weeks of treatment. Liver enzymes are also on the rise. I have bone and liver involvement.
How long have you been on Ibrance? I wish you continued success!
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Zarovka, I had a pet scan after 3 cycles of Ibrance/Letrozole/Xgeva. The 2 or three small liver mets were gone, and the multiple bone mets in my torso, hip, humerus all showed shrinkage and rebuilding of bone. The florescence units decreased measurably, though I am not recalling the numbers. Tumor markers went from about 700 and 600 to 600 and 500 respectively. My pain level went from "OMG, I'm going to need narcotics soon" to almost no pain at all.
I did not ask my MO about specific future treatments he felt were most promising, but I'll check at my December visit
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I had a similar fast and extensive response. I am always wondering how unusual it was. I do some CAM protocols and I think they help. However, your the fourth or fifth person I've chatted with that had a strong response like that. So, who knows. I expect we'll be chatting in 15 years, still wondering what worked and what didn't.
>Z<
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My MO was pleased and somewhat surprised. He did feel that it was an exceptional response. I feel fortunate to have these treatments available. Sounds odd, but I guess if this disease had to happen, now is a good time to get it. Cheers!
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I have been on Ibrance/Femara/Xgeva for 6 mo. Saw my Onc Tues and had above normal results. She says she is pleased with normal, but mine was better. Don't understand all the medical language yet, but pleased with the results. Only problem my Onc is leaving and I am not sure who I will get. Lucked up with her, so, a little nervous. I am at Levine Cancer Center. The dr she said she might put me with is a palliative and hospice dr who has also been at MD Anderson in Tx. I know I am rambling on, but any ideas about what are the best creditials for an oncologist....integrative, internist, etc? Appreciate any advice any one has.0
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masonsmawmaw,
I'm one of those who got ONJ from a necessary tooth extraction while I was on Xgeva, so I'm wary for you. My specialty dentist at UCLA, who treated my ONJ after the fact, said he wouldve tried anything other than pulling the tooth first. In my case the tooth was split. He said he would have tried sealing the tooth together, rather than pulling it. In your case, there truly might not be an option. I would go off of the Xgeva, and hold off having the tooth pulled as long as possible. I also would suggest finding a dentist who specializes in ONJ. They are a pretty rare specialty, and usually affiliated with a university. I wish you the very best of luck and cross my fingers for you for no complications. I hope I didn't scare you. Although ONj is risky, it's still only a small percentage of people who develop it. You can PM me if you have any more questions.
STefanie
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Hi, all - I am very new to all of this. I got diagnosed last month with Stage IV after a 23-year survival. I am blessed beyond measure, I know. I had two "hot" lymph nodes under my sternum but no lung or bone involvement. The PET scan showed 3 very small spots on my liver but the oncologist said that was not unusual for a fat, out-of-shape 60-yr-old. He put me on 125 mg Ibrance with 2.5 mg letrozole. I just finished my first 3 weeks.
Honestly, I don't know how well I did! I was really exhausted during week two but am still recovering from the VATS procedure to remove the nodes and working full-time. As week 3 began, I actually felt better, got a bit of my pep back. My big complaint at this point is a sore mouth & throat. I think, too, that my appetite might be affected. I usually can eat just about anything but these days, there are foods that I cannot even think about eating!
My question for the group is -- do the effects aggregate? Will each subsequent session get harder?
I will have another PET scan in late December to check the effects and am hoping for the best. The shared experiences of this group have really given me hope and optimism and courage!
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Hi patchingpeg, welcome to our group but so sorry you have to be here. However, these are a great group of smart, informed and very helpful women who are also very sympathetic to all you are going through. Most of the ladies here are not as far removed from cancer as we were. I was diagnosed in January 1991, so 25 years for me. My doctor has said that because it's been so long since I had it, that means it's slow growing and we should be able to live a long time yet with all the new treatments to try if the first one fails.
As for side effects, I think most women here would agree the they get better as time goes on. My mouth sores come and go but the fatigue seems to hang around always, some days less than others. My hair has thinned but I believe (hope) that has slowed. I'm now on Rd. #11, day 4 and feel Ok, not great but OK. I also have mild nausea but my Dr. and I both think I'm very sensitive to medication in general. A lot of women have very few side effects. All in all, I believe this tretment is one of the easiest one to be on and I pray all of us here have a long run on it.
Good luck to you, ask all your questions here. Someone will have the answer.
Faith (in the future)
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Hi PatchingPeg,
I've been on Ibrance (plus Letrozole) since February. My first two rounds were 125mg, then after that 100mg because of low neutraphils. I've had a great response, with two subsequent scans showing my tumors shrinking or disappearing and my tumor markers have gone down, as well. My hair grew back that I had lost on AC chemo that ended in January and other than consistently low WBC, I haven't had any nasty SEs. I have fatigue, but it isn't crippling, mainly a loss of stamina. I have to pace myself. I have a great appetite; I just have to remind myself to stay really well hydrated. Best of luck on this protocol and with your December PET scan!
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Airlinegal - can you remind what you response to ibrance has been as measured by scans? What kind of tumors showed up in the scans? How did the response present itself (decrease in size? metabolic activity?). Over what period.
PatchingPeg - Ibrance had some side effects in the beginning but now, after 10 cycles they are gone. The letrozol, however, has been difficult. But even with the letrozol SE's my life is good to awesome most days and my cancer is controlled. Welcome. It's not what we wanted but it's okay.
>Z<
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Hi Mel. I always need an extra week for my ANC(absolute neutrophil count) to come up to 1000 or over. Not sure if there is a specific therapeutic level for Ibrance. I'm guessing that any dose works, but lower doses may take longer? I agree that the scan is the missing piece of the puzzle for you right now. When is it likely to happen? Everyone will agree, it's hard waiting for them..... holding you in the light <MJH>
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Hi PEG,
No wonder you feel tired! I think that your SE's will abate as time goes along. I felt much more fatigued during my first 2 cycles(presently on #6). Have you been using a mouth rinse for the sores? I think it is 1/4 cup baking soda and 1/4 cup salt to a quart of water. Use it at room temp about 3 times a day. I did not get the sores, but used the rinse faithfully at first. Holding you in the light... <MJH>
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Hi patchingpeg,
Some side effects are common for a lot of us and some are very specific to individuals. Some people get very few side effects some get a lot. I am in the middle of my 11th cycle of Ibrance/Letrozole protocol. I have found that some side effects like the low white blood cell counts and anemia are consistent but there are other side effects that I experience for a while and then diminish or disappear altogether and new ones pop up. I don't really know what to expect from month to month. Here is a sampling of what my experience has been and they are in no particular order. I probably even forgot some... Hope this is helpful to you and others new to the protocol.
- Hair thinning - Initially I thought I was not going to be affected by this one. I probably went about 4 or 5 months with no hair thinning and then slowly it started to happen. It was pretty upsetting a around the 7th and 8th month. It continues to thin but seems to have slowed down now. It is just thinning so far. It's not noticeable to others, just to me and my hair stylist.
- watering eyes - I suffered for almost 3 months with watering eyes. Very bad. But that SE was helped by eye drops and did go away. I read from other who have had this se use decongestants to keep it at bay. It may stay it may go away.
- skin rashes - I had mild skin rashes on my arm in the first two months but not again since.
- acidy stomach - Ibrance used to cause me some burning in my stomach. that hasn't gone away completely but has gotten much better.
- sore/tender gums - my gums bleed when I brush my teeth and floss. not horribly, and not all the time. comes and goes.
- sinus congestion - I have mild sinus congestion that comes and goes.
- joint pain - mainly from letrozole. That didn't start to happen until about cycle 4. It is not all the time. It comes and goes. occassionally I'll take advil if it bothers enough.
- fatigue - for me it isn't debilitating but I definitely can't do as much as I used to.
- facial rash - periorificial dermatitis - a two month course of antibiotics resolved this one.
- bruising - I bruise easily and the bruising take a long time to go away. In some cases a faint dark area remains where the bruise was.
- nail growth - I've noticed that my nails (fingers and toes) are growing faster. seems like a counter intuitive effect. But I have never had to cut my toenails so often before. it's really strange for me.
- morning headaches and overall malaise - I felt this way every morning for the first few months but then it subsided and finally went away.
- hot flashes - they come and go and don't last longer than a few minutes. I'm post menopause.
Keep in mind others on this protocol will probably have a very different list of SEs. Everyone responds differently. You may not experience any of the SEs I've listed.
I'm thinking maybe we should create a new topic listing just the side effects we've experienced on this protocol. Nothing else in the topic. I know how tough it must be for new comers to weed through these long threads looking for specific information on side effects when there are so many posts addressing our personal relationships and words of encouragement and support for each other. All of that is lovely and wonderful and I treasure it but I also remember when I first came on board I was desperately seeking information and felt so overwhelmed by my diagnosis that having to read through so many posts was exhausting. Just a thought. I will open a topic like that see if it gets traction.
Cathy
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Hi MJH, thanks for your response. It seems that the additional week to have the blood counts rebound is fairly common. I have a scan in early December. The scan anxiety never goes away!
I am thinking my Onc wants to switch my treatment plan due to rising tumor markers. I usually see him once a month, but he wants to see me after just two weeks. I of course was hoping Ibrance would be successful.
Wishing you continued success with Ibrance for a long time to come! Me
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Hi Z... Not sure how to interpret the scan correctly...in April 2016. Osseous: metastatic disease involving the axial and appendicular skeleton. Prominent uptake in the upper cervical spine. Max SUV is 10.7. Max SUV in the T9 vertebral body is 6.5, seventh rib with a max of 6.3. Nov. scan right lateral C2 SUV max 2.7. T10 vertebral body SUV max 2.1 previously 2.5. Anterior left seventh rib SUV max 1.8 previously 2.9. T3 vertebral body SUV max 1.8 previously 3.7. The Onc said she was pleased, so, trying to understand the lingo. The way I interrupt that most are going down.0
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Also Z she said my cancer cell count (?) that is how I interrupted it has gone from 285 down to 76. She is not always real clear, she just assumes I get it all and I am trying to understand the medical terms. So I felt that was good.0
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hi all,
just checking in. I'm on cycle 5, still on 100mg even tho my counts are only at 1.1, they feel that no labs at 2 weeks is necessary unless I start feeling really bad.
My hot flashes in the night are worse than ever, when I told onc about it, she said that was very unusual that with most patients they are gone by cycle 2. really?? mine just keep waking me up in the night.
my hair is still thinning & my nails are growing at warp speed, seems like I need to cut them every 2 days. And the bruising for me as well, I have a mark on my leg where I ran into a trunk latch & there is still a mark there almost a year later.
But I'm happy to be on the drug, living the new normal with a good quality of life. My last scans & TM's were stable.
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Airlinegal.
SUV in a pet scan is a measure of metabolic activity. It is a measure of the uptake by the cancer of the radioactive glucose they injected before the scan. When SUV levels go down, it means the cancer is less active. Some people define cancer as cells with an SUV (sugar uptake) of greater than 2.5. It really depends on how the SUV compares with surrounding tissue, but your current SUV levels suggest that your tumors are dormant. So that's good.
The current blood tests are test for cancer antigens. These are proteins on the surface of cancer cells that are unique to cancer cells. In general antigens are foreign substances in the blood that provoke an immune response. Sometimes a reduction in cancer antigens indicates a response to a drug.
Do they mention the size of the tumors? One would like them to get smaller, but it is not always what happens even if you are responding to the drug. Sometimes the body can't get rid of the dead cancer cells, so it just encapsulates the dead cells in calcium.
That is a good response.
>Z<
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Thanks, all, for the comments and descriptions about the side effects of my cocktail. I think it will be hard to take the next pill on Wed. It still feels too surreal for me, I guess. Ann sent me her guide to MBC - what a treasure trove of information!
Really glad I found this group.
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Hello, MJH. Thank you for reporting optimism from Dana Farber! That is encouraging. GG27, I'm still flashing and bruising here, too. Probably less bruising currently. Z, what is this about dead cancer cells getting encapsulated? I'm so curious about this, because I had so many tumors that could still be seen after taxol but were "dead".
Patchingpeg, no! After 23 years. So, it was just in nodes and they removed the nodes? That sounds like oligo back to NED? As far as your question about side effects, I found that my body seemed to adjust to Ibrance. I threw up my first dose, and had to eat carefully so as not to upset my stomach for a short time, but soon all was normal. Like Katty, I have fatigue and have to pace myself. I can do things, just not too much at once. Talk to your onc and nurse about the sore mouth and throat. It did take a dose reduction to get rid of the mouth sores in my case.
Here is what my oncology nurses said about the various mouth rinses:
To help prevent mouth sores: Use Biotene mouthwash (the Biotene PBF rinse has no parabens), and not a mouthwash that has alcohol.
If you have mouth sores: To aid healing, use the salt and baking soda rinse several times per day (8 oz. water, 1/4 t baking soda, 1/8 t salt). For pain, use Magic Mouthwash. For this you need a prescription, and the pharmacist will mix it up for you. It contains benadryl, maalox, and lidocaine.
I foundit helpedto rinse or brush after eating. Useavery soft toothbrush, and fruit-flavored children's toothpaste rather than an adult minty one that makes your mouth tingle. Avoid sharp, acidic, or spicy foods. Watch the sugarInteresting idea, AnimalCrackers. I have often asked myself how far off topic is it ok to go, and I end up answering that this thread is not only about information but about community, so I don't censor too much. I do see the problem for new people looking for info in a long thread. I don't mind repeating myself. Sometimes I'm even aware I'm doing it!
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Shetland - the process by which injured and dead tissue becomes calcified is called dystrophic calcification. Basically, when the body cannot clear dead tissue (whatever it is) it will mineralizes it. I can't find a good article but I often read about people having tumors removed and finding they were mostly or entirely mineralized. CT scans can't distinguish between calcified or necrotic tissue and a live tumor.
I think this is why you can find studies where women who are stable do as well as women who get to NED. In many cases, stable tumors are just dead tissue the body can't get rid of. Or that is my recollection. I'd be interested if anyone has an reference or thoughts on this... I can't find my references and I am wondering if I have this straight.
>Z<
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Oh my gosh, I have tumor fossils! If my insurance were to start denying PET/CT, it would be hard to distinguish the fossils from active tumors. Well, even harder than my current situation with the mild uptake and the lesion that may or may not have changed size. I have wondered the same thing about stable vs. NED and what scan they are using.
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