Ibrance (Palbociclib)
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Thanks Z and Katty...you are so right.. Looking for every kind of help and have to not be gullible.0
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The biomat I chose is the TAO-chair (PEMF) Inframat Pro from www.healthyline.com. This mat has their newest technology for filtering EMFs. It can be used in a chair or on a flat surface, and I believe it can also be used in a car with an adapter. It's filled with jade, amethyst, and tourmaline stones and feels amazing on my widespread bone mets. It has temperature control and a 9 hour timer. I am already loving it, and sometimes I have to shoo my family members away from it so I can get my turn. My elderly parents loved it so much when they visited at Thanksgiving that my brother and I bought them one for Christmas!
There's a 45-day guarantee trial period for returns if it does not meet your needs.
Oh, and they gave me a code to use and share for a special needs discount: 10off
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Shetland and Lynnwood, I'm so happy to see you have both been on Ibrance for 20 months, hope we all can get that and more. Shetland, I noticed you said you were on the reduced doses and it obviously still seems to be working. Lynnwood, are you still on 125mg or one of the lesser doses?
Fatigue is such a major thing for me, I'm thinking of asking my MO if a reduced dose will still keep things in check and allow me to feel better even though my numbers have been ok. I'm grateful we have this treatment that is much better than chemo but sometimes it just gets me really down not being able to do things I used to. Of course, I'm not getting any younger either. LOL
Another option I wonder about is the regular 21 days on and then two weeks off instead of just one. I have so many questions running around in my head. I think I remember my onc saying he was going to attend a cancer conference in California this month and find out more about other drugs. Has anyone else heard of this conference ? I tried to google it but didn't find anything. The reason I asked is because there are so many things I want him to find out and I intend to ask him more when I see him on Tuesday.
Faith ( in the future)
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Faith, I am on anastrozole and ibrance 75 mg, 3 weeks on two weeks off. My latest scans showed marked improvement in my liver tumors. I have virtually no SE's except maybe getting a little fatigued by the end of the cycle. Also Deana, this is while my TM's went up from 150 to 300....Just saying that nothing is definitive in this stupid cursed disease.
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I just finished my first week of Ibrance with letrozole . Not too bad, my stomach is getting use to it. I have always taking tamoxifen and now letrozole at night, bedtime. My question is if anyone takes Ibrance at night, do they have a harder time waking up in the morning? Thank you to all who share reading this thread has been invaluable for me.
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Hi teacher911- I am finishing my 12th cycle tonight of ibrance @100mg +faslodex. I take it at night with dinner, still working full time, and wake up early every day. For me it works well with my biggest meal. Hi again Faith - I was reduced to 100mg after 6 mos when my WBC numbers tanked. But for those of you who care about TMs - mine was 38 in August, then climbed a little due to my jaw met. It is not onj, rather a rare met to my left mandible. So far Ibrance has held down my lung and sternum issues, except for this met. I will start 3 weeks of rather unpleasant radiation on 12/19 (I have to wear a head mask like Freddy Krueger) when I return from Germany cruise 12/7-12/15. Stay active and this combo will work for many of us!
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Artist and Lalady, thanks for letting me know about the lower doses of IBrance you are using. I'd like to try a lower dose but numbers have been ok so I'm not sure what the MO will say about that. I'll won't know if I don't ask though. So, we'll see.
Lalady, have a great trip!
Hugs, Faith. (In the future)
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Lynnwood, you too with mouth sores this cycle? It almost makes me wonder if the manufacturer put too much in a batch of pills! Or maybe it has something to do with being on it a long time? My eyes are especially dry this time, too. I'll be asking the nurse if I should wait for my mouth to heal completely before starting #21. I am also seen once a month.
Faith, mouth sores was why my dose was reduced to 100 mg. Then the eventual reduction to 75 mg I think was really for fatigue, though my onc convinced me to lower by talking about my blood counts. When we happened to test on the first day of a new cycle instead of week 2 or 3, we found the counts were not rebounding as well as they had before. Have you tested on the last day of your week off or the day you are supposed to start? So it seems my onc preferred to lower the dose rather than increase the days off. I'm glad I did lower because I have been able to keep going with it. I'd say I run at 65% of normal now, which takes prioritizing and adapting, but gives me decent quality of life.
Artist, I'm so glad to know you found the combo and schedule that works for you, both in terms of improved scan results and liver enzymes!
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I've been on the middle dose, 100 mg, since my third cycle last spring with minimal SEs. Three weeks on, one week off. I do have consistently low WBC, and have had one UTI. I've had consistent improvement / no progression since I started this protocol and my TMs have gone down. I take my Ibrance right after dinner. I do sometimes get heartburn and more rarely reflux, but I had that prior to my diagnosis and treatment. I push water and fiber at the beginning of each cycle (if I remember) to guard against constipation. I've had problems with dry eye also, but just with one eye on the side where I had some Mohs surgery on my upper cheek two years ago, so the skin is tighter. I had mouth sores when I was on AC last winter, but none since. Once in a while, I feel some beginning and start rinsing religiously with baking soda and water and that has done the trick.
I have a monthly follow-up during my "off" week.
Have a great cruise, Lalady!
Happy December, y'all!
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Faith, I've been on 100 mg since the second cycle, 125mg tanked my counts. No issues with the 100mg at all
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Happy to report that after 20 cycles of Ibrance, Femara, Xgeva, my scan today is stable and the widespread bone mets are sclerotic. What a relief! Bring on cycle 21!!
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That is wonderful news Lynnewood. I have just completed my second cycle and won't know if it is working until January. Hope it is as it is still pretty tolerable. I asked today if Ibuprofen lowers neutrophils and Onc said "no" However even though I have arthritis and bone mets both giving pain I think I will lay off Ibuprofen when bloods are due! x
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Such fabulous news Lynnwood!!! Great way to go into the next cycle and and the holidays!
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Hi everyone, I still have this thread as preferred, and just tackling BCO after a while. I all, we do bump into each other in other threads, but i do miss you.
The mat and it's powers really had my interest. Could you elaborate on the difference between what you mentioned Zar far infrared (with the amazon link) or the other one Inframat pro Lulubee that you choose. I think this is such an important item, there is a monetary difference, but is one better over the other one? I would love to get Dani such a thing. Please advice.Thanks so much.
BC110115, Dani also progressed on Ibrance/Letrozole, she got 2 liver spots while on it, and then after 4 weeks she had innumerable, so she was started on Ixempra/Herceptin and with more progression, she is now on 3rd cycle Xeloda. Doc says hormonal do not work for her. Although she is ER+ (I don't quite understand). So we are on the Xeloda thread among others. It did help a bit (but in her case in the past it's been just progression and no good news), she's kinda used up pretty much the whole array of treatments. SE's bearable, ladies work out different schedules on Xeloda also, many ladies get Xeloda once liver mets are diagnosed, check it out. Best of luck,
Deanna, you've been just terrific with that unbelievable link you sent to me in reference to scans, awesome. I do have to ask you, what about doing some scanning? If you feel so uncomfortable, maybe some scanning sooner than later for peace of mind... unless it's the treatment itself, (even not thinking about TM's, which were never really accurate for Dani)
Take care everyone,
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Mom - I am not familiar with the PEMF system that lulu uses, but here is a Youtube video comparing the two.
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Hi all, I've been around for years but haven't posted much. I just finished a great run on Faslodex which kept my bone mets stable for 5 years. Had a scan in early November that showed significant progression so I started Ibrance and Femara this past Friday. Believe it or not, I started at Page 1 of this thread and ran out of steam reading through the pages at about page 60!! There is just such a wealth of information on this site and while I hate having to be here, I am grateful for all of you!
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I'm encouraged to hear about the Fulvestrant success. I may be headed there in the near future. During my recent (6th) cycle of Ibrance, Xgeva,Femara, I had one tumor marker spike up(CA15-3) and the other decrease. Also have had mild, but annoying right upper quadrant pain. So I went to the "P" word (progression) in my head and had a bit of a pity party. Saw my MO today, who suggested looking at next months TM's and deciding then about another scan. (last one Sept16). Of course if pain worsens I am to call. My MO has such a calm and confident demeanor that I almost always feel better coming out of there. Can bone mets stay receded while liver mets increase? Certainly the increased blood supply to the liver must be a factor. Really, I don't have enough info yet. So after my 30 minute drive home in the snow today, I was in a much better place in my head. Back in the here and the now......
So, I'm thinking of all of you a lot and hoping you are finding some peace and enjoyment each day. Hallelujah for every victory against this confounding and highly challenging disease. Love and hugs MJH
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Teacher, I kind of like that it seems to help me sleep well. Since I usually stay up TOO late not sure if it's the Ibrance or bad habits but I hate waking up early. Especially because it's been 16 degrees in the morning here!
lalady, do you have to wear the mask all the time or what. That does not sound like fun at all....Have a great trip. You are so lucky to be able to travel so much. We finally sold our house so maybe we will have some funds freed up to do a few big ones soon.
Shetland, Yes, this is working well on one hand, for my liver, but just found out I have a small spot on my L2......crap, scary stuff
Lynnwoood, Awesome news! Hope I can stay on this. I might have to start Xgeva as well which she said can help with the bone met.
Hi Susan! We are bummed you have to be here too but nice to meet you!
Thanks and same to you MJ!
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I was checking the mats. Zar thanks so much. Those particular ones are very expensive, i think. But I was checking the one you mentioned and Lulubee. Lulubee it seems the one you mentioned is just in a sitting position? I saw another one, is more costly but it's like a long mattress. She is tiny, but I thought might as well go all out? http://healthyline.com/product/healthyline-tourmal... so she could actually lay on it? what do you guys think?
I think it's great, because she is very cold always and it seems as it could really help. TIA
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MomATT, the TAO-chair mat can be used in a chair or laid flat. I use it both ways. I put it in my desk chair sometimes, and then sometimes at night I lay it out on my bed and sleep on it. I have slept on it the past two nights with it set on 44C, and I slept like a hibernating bear! I don't know if that's enough heat to affect the bone mets (anybody have data on that?), but it sure did put me lights out all night.
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i have had my second falsodex injection . The Ibrax is going through the process of getting it approved with my insurce and then applying for help with the copay. My guess is I will be joining you by next week
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Hi Grace - Welcome to our esteemed company. Were you recently diagnosed stage IV?
MomATT - Heat is used to treat cancer in many different ways. It is a fairly well supported treatment. It is always combined with other protocols. The far infrared wavelengths are supposed to penetrate more deeply into the body. That may be true. I know I really like these heating pads. The claims about negative ions and magnetic forces that I see associated with these mats are not well supported, IMO. That kinda turned me off reading the link you posted.
If you search for far infrared heating pad, or just infrared heating pad in Amazon, you get more options including some cheaper options. Here's one. Here's another. And another.
Technically, I don't see why they should cost 100s of dollars. The cheaper ones should work fine.
We have to be careful with money. Spending money on the right things and not on the wrong things is a big piece of winning this fight.
Sending peace and joy to you and dany through the holidays.
>Z<
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Hello Grace,
Welcome to the place nobody ever wanted to be, but where you will find amazing support and info. Good luck with starting this treatment. I have tolerated it quite well, and I think most others have also. Holding you in the light......MJ
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I started Ibrance a couple months ago. My tumor markers went down 14 points after the first month. The second month it didnt go down. I got sick a couple weeks ago, which turned into celulitis, and I ended up in the hospital for 8 days. I had to stop my ibrance for about 3 weeks. Went to the dr 2 wks ago, and my TM numbers went up from 26 to 38. Today they went up again to 45. Dr says dont worry about it, its from the infection I had. I need to hear from others that went through this increase in markers after being sick. I have been sick before (not this bad) and not had the markers go up. I had a horrible bacterial infection and almost died. Is this really what could be making the numbers go up? I know its not a huge increase, but I am freaking out.
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I had to go off treatment for several weeks three years ago when I had emergency surgery for an infection in my gallbladder that led to liver failure. I was in the hospital also, and like you, I came very close to dying. My tumor markers climbed for about six weeks but my liver was just too sick to resume treatment. When I finally was able, my TMs went back down into normal range again and have stayed low ever since.
Hang in there. Watch a funny movie and forget about the stupid TMs for a while.
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My TMs have gone up each cycle since I started. I'm holding onto what others have said that it can take 6 or 9 months for it to work and that oftentimes rising TM are the cell shed which is a good thing
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Hello and welcome to all the new people but so sorry you find yourselves here. This is a great group of knowledgeable and helpful women and I for one am very grateful to also have found a safe place to come to for advice, comfort and just plain venting when necessary.
I saw my MO yesterday and I was very nervous since my tumor markers had gone up just a tiny bit. This time they were down a fraction and he tells me no need to worry because they can bounce around a lot. After 11 rds., I am still stable. YEH! I sure hope we can all get a long run on this drug even though it kinda knocks the stuffing out of me during the last week. I know how scary it is when our tumor markers go up even just a bit. However, unless it's a big jump in one month, we should take a deep breath and wait for the real story with the scans, I know, I know, easy to say, not so do easy to do.
I asked about the the BIG BC conference in Sant Antonio this week. His partner is there now as are hundreds of doctors from all over the world as this is the biggest conference of it's kind. He says there are lots of new drugs in the pipeline. He mentioned one is a sister drug to Ibrance with less side effects. Of course, it's still in trial but hopefully will be available SOON. I'm sure we can find lots of info on the internet in the coming days.
Hope you all can find hope in this season of Hope.
Hugs, Faith (in the future)
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Thanks for this info Faith. Do you or indeed anyone have any info on why Ibrance works so well for some & not for others eg depending on where mets are etc? Or does it perform better paired with Letrozole or Fulvestant? We are a bit in the dark here in the UK re this drug as it is not yet approved. Hope everyone is doing ok. Xx0 -
Hi Beth,
I am in the middle of a tumor marker freak out also. Interestingly, my rise came after a month of a bad cold. Hmmm.... Cellulitis is such a frightening condition and I am so grateful that it is behind you. My tumor markers are very high(CA15-3 currently 485, CA27-29 420) . CA15-3 went up 100 points last time! Eek! The CA27-29 continued to go down, weird. My MO said he wished he had just ordered the one that went down! I am also having mild right flank pain (liver area). I will have them redrawn end of month and then maybe have scan in January. Ibrance/letrozole knocked my tumors to the curb after 3 treatments. I am on cycle #7 now.
My MO says that high tumor markers don't necessarily indicate big tumor load, and low ones don't always indicate low tumor load. He also said that he sees them fluctuate. If they trend up over time, a scan is probably necessary. He is concerned first with 1) how you feel 2) scan results and lastly 3) tumor markers. As others on this site have stated, TM's are just one piece of the puzzle. But I can relate to your freak out- we can't be robots and never worry about anything! Now that I think of it, looking back on my 30 year career as a clinical laboratory technologist, we would often see elevated total serum proteins in patients with infection and fever. TM's are proteins shed by cancer cells, so feasibly they could be included in the total protein elevation?
Holding you all in the light....love and hugs, MJ
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Chico -
Letrozol plus Ibrance is typically a first line treatment. Fulvestrant and Ibrance is a second line treatment. The protocols aren't comparable since you use them different settings.
I haven't seen any indication that Ibrance is better for one organ over another. It's a systemic treatment so it should get everywhere ... except maybe the brain.
I am glad that everyone's TM freakouts are turning out to be false alarms. IMO, TM's are very effective at causing people to worry. I am not convinced they have any other purpose.
We don't know if rising tumor markers on ibrance are a sign of healing or progression. It took twenty years to begin to understand how letrozol alone affects tumor markers (they often, but not always, rise as letrozol takes effect and tumor shrink).
Ribociclib is the Ibrance competitor in the pipeline. From the clinical trial it looks to me like side effects and efficacy are the same. Basically, neutropenia and nausea are a bit higher when you add ribociclib, but otherwise the side effects come from the letrozol. This is from the Novartis press release.
Most adverse events in the MONALEESA-2 trial were mild to moderate in severity, identified early through routine monitoring, and generally managed through dose interruption and reduction[1]. The discontinuation rate due to adverse events in the MONALEESA-2 trial was 7.5% for LEE011 plus letrozole and 2.1% for letrozole alone[1].
The most common grade 3/4 (most severe) adverse events were as follows for LEE011 plus letrozole compared to letrozole alone: neutropenia (60% vs 1%), leukopenia (21% vs 1%), elevated alanine aminotransferase (9% vs 1%), lymphopenia (7% vs 1%) and elevated aspartate aminotransferase (6% vs 1%)[1]. The most common all-grade adverse events (>=35% of patients in either arm, regardless of relationship to study treatment) were as follows for LEE011 plus letrozole compared to letrozole alone: neutropenia (74% vs 5%), nausea (52% vs 29%), infections (50% vs 42%), fatigue (37% vs 30%), and diarrhea (35% vs 22%)[1]. Nausea, infections, fatigue, and diarrhea were mostly grade 1 or 2[1].
Like Ibrance, ribociclib is being fast tracked to market without overall survival data or really much data at all. We won't know how it really works until we see how it plays out for us... the real guinea pigs.
Hang in there ladies and enjoy the holidays!
>Z<
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