Ibrance (Palbociclib)
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Casun - hormone suppression causes the lining of the urinary canal to become thin. I know letrozol causes this, but i suspect anything that suppresses estrogen thins the lining of of the urinary tract and causes increased UTI. I have never had a UTI in my life until I started ibrance/letrozol so i did not know the symptoms and thought they were side effects. I had an untreated UTI for many weeks as a result and this is really a bad thing when you are fighting cancer. Now I test for UTI's every 3 months symptoms or no. The symptoms are hard to distinguish from the side effects of the drugs. I figured this out with the help of my complementary team. My onc is oblivious to this issue. I am glad your onc is on top of this.
Nancy - Ibrance can make wound healing go slowly. It's a side effect identified in trials but not discussed much. Consider a lower dose at least until your wound heals, if you are having trouble.
>Z<
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Lalady- drove to travel agents office right after hearing good news from MO and put a deposit down for my daughter and I to go to Italy in June!!! Very very excited!!
Z and Dianarose- thank you for your feedback!
Perky2020- yes I am also on Letrozole with the Ibrance. I am doing pretty good with SE now. I found the first few months were the hardest with SE as my body got used to the new treatment. I do pretty well now. I am still tired and find I need to pace myself. I also still get mouth sores and have joint pain but overall the SE are manageable.
Shetland Pony- i did ask my MO about why she wants to go to every 6 months. She said I had been doing well for awhile and she wants to decrease my exposure to the radiation. The fact that my TM have always been normal does make me a little worried about waiting the six months. I do think I am going to have a consult with Dana Farber to get their opinion.
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Pinkpunk, I had to chuckle when I read "not many symptoms" followed by your list of nose bleed, fatigue, thinning skin, and mouth sores. It just shows how important perspective is!
Casun, my onc blames the anti-estrogens for UTIs. Fortunately, I mostly manage to avoid having them: I make a trip to the bathroom often, drink enough water, hubby and I both shower before sex, I take cranberry fruit pills after and any time I feel any UT irritation.
Good idea, singlemom1.
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jobur, I had been taking Biotin before the return of my cancer as my hair was thinning. I stopped for awhile after the return with mets to the lung. When my hair started to really thin, I checked with MO and got the OK to take it again. My research showed it was okay to take 10mg of Biotin and now my hair is getting a little thicker and my nails are great. Hope this helps.
Welcome to all the newbies but so sorry you have to be here. Ask away about any thing that bothers you, someone here probably has been through it and will help if they can. I'm also so grateful that I found this forum, it has helped so much.
My last blood test showed stable markers, now on Round #15 of 125mg. My MO also doesn't want to scan too often especially if there's no new symptoms and markers are stable. The first scan was three months after starting Ibrance in April of 2016 and the next scan was in October and I will have another the end of this month or in April. Good luck to everyone, may we all have a long run on this treatment.
Faith (in the future)
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I am waiting 4-5 months for scans these days. Don't have the guts to wait 6. My onc is fine with anything between 3 and 6 months at the moment, absent any other indications of problems.
>Z<
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I was just about to ask for a longer scan interval than 3 months when things started looking iffy, and it took another year of 3-month PET scans to definitely show the cancer had woken up. Since my TMs have been shown to be so accurate, I hope to reach a point where we scan every 4 or 5 unless the TMs rise. Less radiation, fewer appointments. More time for real life, right, Z?
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Scans mess with my head for days before and after, even if the results are good. They make me sick (flue like symptoms). I have to drive 2 hours on an empty stomach to get one. Nothing good about scans. Every reason to delay as much as you reasonably can.
My TM's dropped a bit last month. I hope they are as accurate as Shetland's!
The boob and armpit with the tumor burn and ache these days. They burned and ached a lot in the beginning when they were getting smaller. Let's hope that is what is going on now. Does anyone's boob hurt where the primary tumor is?
>Z<
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Lalady and Faith, Thank you for responding to my biotin question. I do appreciate it! Nice to see you are both still on this tx and doing well.
Booboo, The first year was really hard for me, I had always been healthy and my initial dx was stage IV. But I made it through and started feeling better. You will too, but it takes time and is not an easy adjustment. As others have said, it is good for anyone to get will, POAH, and other docs in order so you can forget about them and life your life, but you have time. So sorry that you are dealing with sarcoidosis as well as mbc. In regards to your question regarding the relationship of the number of bone mets to life expectancy, there are threads here on oligometastatic mbc, where only one or two sites are involved. Some MOs consider these patients curable. I had mets throughout most of my spine and pelvis at dx, but I'm still here and doing well so far. The oglio thread is here
https://community.breastcancer.org/forum/8/topics/786652?page=1#post_2993187
Singlemom, A trip to Italy with your daughter sounds ideal! I'm sure you will have a fantastic time and make some wonderful memories.
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jobur~ thank you for posting that thread and information , I seem to be the definition of that and I had never heard of it. I will be investigating that throughly! I am seeing my onc on Friday and more blood work on Wednesday, last two have been uneventful and I was told stable. The ibrance seems to be very well tolerated in my case. My pain is basically gone and I have been walking a lot more and feeling stronger and my nap time is decreasing. I am still fatigued and would pay serious money if these awful terrible disgusting heat flashes would ever so kindly knock it the heck off. I have lymphedema as well which is another bonus to deal with, but if I can shrink these few spots on my bones, that would be ideal. When I started the medication I did have some pain daily building up And I have noticed a big difference!Thank you for sharing. Hope everyone has a strong day. No walking today, it's just too darn chilly! ~M~
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Scans mess with my head too. I'm scheduled for my 3 month scan since I started Ibrance and femara on January 5, 2017. Can good results really show up in just 3 months?
I'm having a strange side effect. I've been very congested and nose bleed. But I don't have fever. It seems to just be chronic since I started meds. Also fatigue but that seems to be a common SE.
In November I was dx with MBC to lung, chest and liver. But my history is long including dx in 1992, 2000 and 2009, treated with surgery, chemo and radiation each time. So this time is my fourth dx.
You would think I'd be used to getting scans. But, no I am not. Especially now that the tumors are so numerous and in so many places.
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Grannax2~ I am supposed to see my onc on Friday and I am also nervous hearing the words scan. I haven't had one in a good while now and I'd like to keep it that way. I just finished my fourth round of ibrance. I just don't like them either. As a matter of a fact I hate them hands down. I completely understand and feel exactly like everyone of you who has ever had to go and get the results. I want a life back where I decide when I go to the doctors. Sigh! I have horrible veins and getting injected with the dye and having an IV done is very difficult. Last time they had to bring up someone with an ultra sound machine to find a vein under the skin , like and inch an a half underneath. I feel all the same things you all feel.
I wish we all drew the golden ticket in life without cancer. Stay strong, rest well. ~M~
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Jobur,
Thanks again for your reply. I definitely came to the right place for support.
I am feeling SO encouraged by the things I'm reading and learning on this
site about MBC. Thanks to all of you who share what they learn and experience,
the good and the bad....it's all helping those of us who are newly dx to move
forward and leave the fear behind.
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Zarovka, About the pain and burning sensation in the breast that had/has the tumor. When I experienced those feelings after lumpectomy I was told it was because breasts have an abundance of nerves and those are symptoms of the nerves healing. It took a looong time (maybe a year?) for those sensations to go away, but they did. So I would take your current discomfort as a good sign. Yuck on having to drive 2 hours for scans!
Grannax2, Yes! Good results can appear in only 3 months. My 1st PET 3 months after switching from arimidex to faslodex was hugely improved. 3 months later (and after adding Ibrance) it was NED. I don't know that those results are typical, but after a tx change it is good to see if it is working or not. Sorry you have been going through this for so long, I hope this combo will give you great results.
Micmel, With your veins I can see why you hate scans so much. They are nerve wrenching enough without that extra pain! From my experience, less pain and less need for napping are signs your tx is working. Unfortunately, so are the hot flashes. Have you tried taking Effexor (venlafaxine) or gabapentin? Don't know how you feel about taking more drugs, but either of these have been helpful to me and others with bad flashes. Do you do any exercises for your lymphedema? I am not cursed with that, but was given exercises to do after my lumpectomy. They are easy and gentle, so let me know if you are interested.
Booboo and other new gals, I am so happy if any of my posts are of help to you! I don't know how I could handle having mbc without this forum.
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MRIs tomorrow. I'm on round 4 of Ibrance and Letrazole. I had significant bone progression in my spine on my November Bone Scans, after 5 years of Faslodex keeping me stable.
PET Scan is next Tuesday. Tumor Markers still elevated but seem to be leveling off.
I am a crazy nut job woman today. I have scanxiety like i have never experienced before. I usually experience a mild case of scanxiety but today seems to be the worst. When I first started this treatment I had noticable improvement in my back pain and was ready to do a little happy dance. Well, the last month or so the back pain is back in full force. I'm wondering if the treatment is doing the job? No, actually I'm obsessing about whether or no the treatment is working. How much worse can my back get?
I think another anti-anxiety pill is call for don't you all? I think we should be shown mercy and allowed to be sedated through the entire thing.!!!
Please, please let me sleep tonight!
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Susan - I hope you sleep well. It's worth looking for ways to reduce pain and anxiety and improve sleep. Any small improvement on any front is huge. These are the cornerstones of wellness. Easier said than done, especially when you are in pain. I pray for good scans so you know the pain is something else. That's the basic issue.
Jobur - I haven't had surgery or a lumpectomy or anything on primary tumor but it seems similar to what you experienced. The whole area burns and hurts. I am pretty sure it is healing as the breast adjusts to the attack on the tumors and then the shrinking of the tumors.
>Z<
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Susan I don't know if this will be helpful for you or others with pain and discomfort. When my bone mets were diagnosed, my thighs, sacrum and hips hurt. I made an appointment with an orthopedic oncologist to make sure my femurs weren't about to snap! He declared my skeleton stable so I scheduled an evaluation with a physical therapist. She began to do something called "myofascial therapy" (you can google it) and prescribed home exercises for me. I was amazed that I got some pretty immediate relief and after 13 visits, I had almost no discomfort. In fact, it's been over 3 months and only Level 1 pain in one femur remains. This was 100% covered by insurance.
To the new IBrance Dancers I'm so glad you're here! This message board has been incredibly encouraging for me and I'm sure it will be for you. Everyone here has faced that "I'm going to die a terrible death SOON!" moment and lived to talk about it. We've all had the Scanxiety days. We've worried about paying for drugs. Every one of us has danced with fatigue. And I'm thankful to say, everyone has poked fun at this disease and at ourselves. We are warriors!!
I'm thankful to be finishing up Round #6. My scans after 3 months (January) showed "remarkable results" (said the onc) with much lower uptake in all the bone mets. The soft tissue mets near my sternum look fairly clear. I plan to wait 4 or 5 months before scanning again unless something changes. The orthopedic oncologist does traditional x-rays and says the right femur tumor is dying from the inside.
My drugs are Arimidex, 100 mg IBrance and XGeva. My counts have stayed within normal ranges and were actually up a little today. I take Turmeric and lots of calcium.
I go through all this to encourage those who are new as others have encouraged me. I pray for all of you each day, that you will be comfortable and at peace. Happy Springtime!
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Micmel, it's great to hear that you are feeling better and stronger! Try asking for the pediatric phlebotomist right off the bat. Don't let them mess around with you. You've been through and are going through enough. Hydrate well and keep the hand warm before the IV.
Wishing peace, restful sleep, and good distractions to all those with scanxiety.
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hi everyone
z and shetland pony thankyou for the depth of research that you bring to this post...having studied nutrional biochemisty long time ago i needed the extra info to get my head around the complexities of this disease. Australia has not as yet given the ok for Imbrance But it is being reviewed this month . So i am very hopeful .My only treatment has been femara and no side effect s.
Thankyou all for your inspiring treatment discussions
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Shetlandpony~ thank you for that advice, next injection for my pet scan I will ask for a pediatric person! I have a port, which now I only have blood drawn from because it's gotten so hard to get blood from my arm, but they can't inject the nuclear ink dye into the port. I drink a large large amount of water each day, I think a portion of my activity comes from hiking to that bathroom twenty times in a half a day. I have no idea when he will order another scan. I would like to only have one if I feel worse, not better. I do experience back pain near my hip area on occasion but is easily fixed with a small dose of Percocet and I've noticed that this week I have only taken one during the daytime. Bad thing is I noticed a pending sore throat, which could plunge my counts 😨, allergies. ? I don't know!
Big improvement from before on the pain front!So I am hopeful. Thank you all for always taking the time to share with each other. It means a lot. Such a great place to have found. Thank you all.
Z~ hope you're doing well. I am trying to push through a week of anxiety. Seeing my onc Friday and blood work tomorrow. (I should have some cheese with my whine)I am dreading it so much. The good thing is my fiancé and I made 9 mastectomy pillows to donate to the doctors office! I have 4 and I use them every single day and I love them. They help so very much with nerve issues and pain from mastectomies and lymphedema pressure. If I can give anything back, because so many people have been so good to me through this journey.
Dianarose~. Still sending strength and thoughts about your ongoing skin issue and hope they gave you the lidocaine ointment and pray it helped even a little if they did.
Have a great strong day ladies. ~M~
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Just left cancer center and platelets dropped again from 96-74. Going to have a breakdown soon. They give me A/C to try to get ahead of the cancer and bring platelets up but chemo also brings them down so can't figure how this is going to work. Go back Thursday to meet with MO. Getting very stressed with it all.
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PatG looks like both of us have been fighting for about the same amount of years, I'm I'm 25 years and you are 22 years survivor. And this is your 4th dx, It helps to know there's someone else whose battle with breast cancer is similar to mine.
Jobur thanks for the encouragement regarding 3 month scan. I am hoping for good results too. I like the terms scansiety and ibrance dancers. Lol
I take Cymbalta for anxiety. It also helps w nerve pain. In 2000, I had a c-3 corpectomy with strut and graft to remove the MBC in my cervical spine. It was a success but, eventually disarraged my spine. I've had lots of pain since that surgery even in other areas of my back. Finally, 3 years ago I tried cymbalta and it has really worked for me.
My MO gave me Amitriptyline to help with hot flashes from femara and it helps but makes me sleepy.
Does anyone else have MBC in lung, chest and liver? With my history of bone mets to c-3, it would seem logical that the mets would have come back in my bones. But, no it did not. Personally, I have the opinion that MBC is not logical.
I guess I'm most concerned about having so many tumors in so many places. I'm waiting and hoping to be a believer in these 2 little pills. After my scan on March 24, I'll let you know.
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((Dianarose)) - I know nothing about platelets but I get the part about a breakdown Everything calms down once you are sailing along on a treatment but until then it is hell.
Grannax - fingers crossed for awesome scans. If you fill out your treatment and diagnostic profile AND make it public in the settings menu on the left it will help us understand your miraculous 25 year fight. We're definitely curious.
>Z<
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Zarovca. I went back to settings and tried to change and edit my profile. I was not able to put in all the info so that it made any sense. Ill just try to give you a summary.
1992- left breast,mastectomy,nodes 21/1, invasive ductal carcinoma, FACx6,
2000- rtf breast, lumpectomy, and c-3 MBC, radiation to cervical spine x10, removal of c-3 and discs above and below ( c-3 corpectomy w strut and graft) on October 30,2000,taxotere x 6, December- April, anti estrogen on and off for 5 years, tumor in spine was HER +, tumor in rtf breast was IDC.
2009- right breast IDC, large tumors, mastectomy with failed reconstruction (skin died so I had to have another surgery to remove it),4/21 nodes, Abraxane x 6, radiation to chest wall and axillary for 2 months, anti estrogen pills, was unable to tolerate.
2016-November 22,2016- CXR showed suspicious nodule- rt lung, November 30, PET showed multiple nodules in rt lung, chest and liver, December 5-liver biopsy-showed MBC, IDC, December 15, consult w MDAnderson-treatment- femoral plus inbrance, started femara December 20, ibrance on January 5,2017.
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Zarovca. I went back to settings and tried to change and edit my profile. I was not able to put in all the info so that it made any sense. Ill just try to give you a summary.
1992- left breast,mastectomy,nodes 21/1, invasive ductal carcinoma, FACx6,
2000- rtf breast, lumpectomy, and c-3 MBC, radiation to cervical spine x10, removal of c-3 and discs above and below ( c-3 corpectomy w strut and graft) on October 30,2000,taxotere x 6, December- April, anti estrogen on and off for 5 years, tumor in spine was HER +, tumor in rtf breast was IDC.
2009- right breast IDC, large tumors, mastectomy with failed reconstruction (skin died so I had to have another surgery to remove it),4/21 nodes, Abraxane x 6, radiation to chest wall and axillary for 2 months, anti estrogen pills, was unable to tolerate.
2016-November 22,2016- CXR showed suspicious nodule- rt lung, November 30, PET showed multiple nodules in rt lung, chest and liver, December 5-liver biopsy-showed MBC, IDC, December 15, consult w MDAnderson-treatment- femoral plus inbrance, started femara December 20, ibrance on January 5,2017.
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Holy Toledo Grannax. You've been actively battling MBC for 15 years! Please hang around and show us how you do it. If Ibrance fails, there is another CDK 4/6 inhibitor, abemaciclib, coming out that has great results on heavily pre-treated cancer. However, I think you'll be with us for a while.
>Z<
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I get teary eyed reading all you struggles and the optimization that follows. You are all so supportive.
Start my 2nd round tomorrow and do feel better than when I started. Maybe from all your encouragement and advice. Swimming, dog walking and gardening are my exercises.
Working on a will, health directives, and putting my house into a TOD deed which is good in California.(I don't like trusts)
My kids have accepted my diagnosis and no longer feel like I'm immediately going to depart. So went to Disneyland with one daughter and her husband last week and going to go with other daughter and 2 granddaughters in 2 week.
Now thinking I should plan Europe trip for whole family maybe next year .... You guys make me feel like I can do that....
Best to all - stay strong - thanks- my prayers are for all of you
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PinkPunk - Nothing better then planning a trip! Just get cancellation insurance on the flight ... We're optimistic and realistic here ... as you seem to be.
>Z<
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Jobur~ I had 35 lymphnodes removed in June of 16, and mastectomy the whole sherbang. I also at the same time had a marble sized spot removed from my Liver. So I lost an incredible amount of cancer, during that surgery. But not too long after I knew my arm hurt like crazy and I was told it was lymphedema. It really hurts, like a water balloon with no room left in it full and awkward. I have to tend to it daily with ointments to numb the pain , when that hurts too I have to decompression wrap my arm for two days and it's miserable with the hot 🌞🔥🔥flashes its double misery!! I am interested in any excersise that may help, I am used to doing free weights daily for years and I can still see my muscle. I see it. !!! It just hurts to move it too much. After the last round of my heavy abraxane chemo. It was noted the little buggers nested in my pelvic area. A few they said. Very surface very small and haven't been there a while. I'm praying ibrance can keep them at bay. I'm trying to stay active,last week I walked three miles and slowly jogged one. This week I'm fighting the upper respiratory thing going around. I'll look for the excersise you mentioned thank you. Rest well ladies. ~M~
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Micmel, Your lymphedema sounds horrible, so sorry you are dealing with this. That's a lot of lymph nodes! Did they suggest any exercises after your surgery? My surgeon didn't say a thing about exercising, but fortunately I was seeing a physical therapist as the time too, so the exercises came from her. I am dead tired tonight, but will try and find a copy of them and pm them to you tomorrow. Don't know if they will help but it's worth a try.
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@Micmel - Your description of lymphedema as a water balloon about to explode is right on. My surgeon said I had zero nodes removed so I couldn't understand why my arm was so swollen, numb and painful for so long after surgery. My oncologist looked at the surgeon's report and said that I actually didn't have any nodes to start with, so when the surgeon removed the fatty layer under my arm (where all the level 1 and 2 nodes are) there were actually no nodes there. Really weird. The oncologist just seemed to focus on cancer and wasn't paying any attention to my complaints of my arm. I asked her for a prescription for a compression sleeve. I have been wearing it daily for about 5-6 weeks and also in the last 2 weeks seeing a massage therapist for manual lymphatic drainage, which is gentle massage of the arm and chest to get the lymphatic system moving. It has helped me. My lower arm is no longer numb, my upper arm is a bit looser and the fluid on my left side has gone down and just tonight I noticed my underarm area is feeling pretty good. Massage therapy is private pay so expensive, but I am happy with the results. It is intensive for 3 or so weeks then maintenance massage. I was also motivated to continue the exercises the physical therapist suggested after the mastectomy, which I stopped doing after about 6 weeks. There's lots of youtube videos for exercises. Was going to post a link, but apparently I am not allow to do so, not sure why. Anyway the one I do is called Lymphodema Awareness Exercise Class by Breast Cancer Haven. I also have 3 lb weights which I use for range of motion about 5-10 minutes a day.
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