Ibrance (Palbociclib)
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Thinking of you every day Gumdoctor. Hoping for a great response to your treatment.
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Gumdoctor, count me as #61 at your hair party! I'm pretty pumped about your combo of the taxane and Carboplatin even though it does kick your behind. (The steroids seem to be the culprit in keeping you awake.) I had the combo of Taxol/Carbo when the first mets showed up on my chest wall. After 3 treatments the tumor was half gone and after 6 I was NED and stayed that way for a few years. I took letrozole for a while after that and then quit all treatment for two years. I hope you get to do that, my friend!
By then immunotherapy will be sitting in the pharmacy waiting for you! Woohoo!
I've had friends who took Abraxane and said it seemed to be less toxic than Taxol or Taxotere......something about its molecules not being coated with something extra......my science knowledge is such a gift to the world, huh? (Cure-ious, where are you?!)
Here I am at your party with my granddaughter, Guest #62!
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Rosie24, out of all the people I know who've told their oncologists about the foot pain (and there are many), yours is the first to lay the guilt at letrozole's feet! Good for him/her!
Love from PatGMc
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Hi Gumdoctor. It is good to hear from you and how you are doing. I am sorry you are struggling and I have been praying for you.
I get odd pains, neuropathy here and there, but nothing like what most of you are saying. Thank you all for all of your honesty.
On a side note, I have a new grandson born today and all are well. Sometimes we just need to hear good news.
Love to all!
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gumdoctor - I’ll be #62!
I hope that you are able to get some good RnR once you settle into not working. It’s a tough transition with lots of emotions I am sure, but just know you are doing all the things to best take care of yourself as you navigate this damn disease.
And I am sending you so much love as you navigate the new treatments and hope that it doesn’t treat you too harshly.
Intolight - good news is always welcome!! There’s nothing like a new baby to bring love into everyone’s hearts. Congratulations 🎊🎈🎉🍾!!
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Love from Philly, your description of the foot problem mimics mine back in the day exactly. Since I have an "hour and a half" bladder, I was up stumbling many times during the night. My precious doctor did not think it was the letrozole. I also had ligament problems which he was willing to attribute to the drug but he was sure I had Plantar F.
Anyway, I decided not to live my life that way. I told him I understood he wanted me on the drug and I absolved him of any responsibility if I got worse. We agreed I would just live my life and not get routine scans. I quit the drug and in six weeks I was completely pain free everywhere! A few years later I had a scan due to some discomfort and my bone mets showed up. I'm still not sorry.
I can't tell you how many friends who were on letrozole and other AIs prophylactically have quit due to the discomfort. I must add that many more were able to tolerate the drugs without severe side effects and some just medicated the pain.
And that's the end of my letrozole whine. I'm happy I started Turmeric when I began with Arimidex. Whether it's that or just the difference in AIs, I'm good.
Love and prayers for better feeling feet, my friends,
Pat
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Intolight, where is the picture of that sweet new baby?
Congratulations to you and your family!
Love from PatGMc
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All, this is the only picture I have...he is the same size as his daddy was only Asher has hair.
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Hi all.
Philly- I have been having pain in my heels also for several months now--Left worse than Right. I told my PCP last visit (May) and he said plantar fasciitis. I don't think so. I think Letrozole. I posted here about it several months ago and so many here post about it so duh I think it is the med. But my PCP won't say it is Letrozole. So I just deal with it. Yes, the pain worse when getting up to bathroom in night or when sitting for long periods and then walking. Feels like a rock in my shoe/sock.
Today I went to lunch with a friend and walked around our local Mall. Just browsed. Maybe 4 hour activity total. I came home exhausted!!!!! Hip and feet hurt. And exhausted. Good grief. Frustrating that I just cannot do too much anymore. But I did have a good time with my friend.
Gumdoctor- I pray for you daily and think of you often. Hugs from here.
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Philly, Fasciitis is absolutely a side effect of AIs- I developed plantar fasciitis in both feet after 6 years on exemestane, and it took me forever to suspect that the AI was causing it. I saw a specialist, got the custom orthotics, and limped all over Florence and Venice on a trip, doing all the stretches they suggest, to no avail. I finally read one report where someone on femara had the problem and took myself off the drug- it completely went away, in short order. That's how I decided to stop the AI altogether. My doc mentioned that it was unusual to develop the problem in both feet. So far the problem has not returned, so maybe just take a break from it and then you'll be able to start it up again...
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Hi all - just wanted to share this blog from a woman on an MBC Facebook group. She transformed from ER+ to triple negative and is still NED 40 months after immunotherapy. Thought Cure amd others might be interested.
BevJen - OMGosh - all those wonderful years! Thank you for sharing that!
Gum doctor -Thanks for stopping by to let us know how you are. Your party sounds fabulous even though it was the start of rough times ahead. Thinking of you and praying for you daily.
And I love pictures! Pat your granddaughter is precious and that little Asher is adorbs, IntoLight!
Philly / glad you got some beach time... here’s hoping you can solve that foot problem....
Love to all,
Lauren
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I started hitting the gym again last week. I went 4 days and so far went 2 days this week. I did the eliptical and the stair machine and this other type of elliptical that your kind of go up and down (hard to explain) I did about 5 to 7 min on each. Today the day I didn't go my hips are hurting both of them...feels like joint pain, only when I sit or lay then get up to walk, once i am walking a bit it goes away. Can this be the Letrozole? If so will an anti inflammatory help that kind of pain? I took an anti inflammatory years ago (i can't even remember what for) I remember that it bothered my stomach much like certain antibiotics can do.
On a side note..before I got diagnosed with Stage IV and began the Ibrance/ Let...etc... when ever I would do the stair machine or the elliptical my left lower back would hurt....I know now that was probably the met in my sacrum...but now...no pain there!!! I am praying that means the Ibrance is working. That's also why I kind of think the joint pain in the hips is from the meds because I never use to have that.
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Nichole sounds like sore muscles post workout? Ever since I’ve been on treatments, I seem to get sorer and it lasts longer when I exercise. I believe it is called DOMS (delayed onset muscular soreness) that I get, and it can last up to a week for me. It is annoying!
I do find that Tylenol helps and it doesn’t upset my stomach like NSAIDS (Advil, Alleve, etc) do.
Good job getting yourself moving!
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Hi! Just checking in it's been a while since I've posted.
I am still on 125mg Ibrance and Letrozole. I had my second scans yesterday since stating treatment at the end of December 2018.
Bone scan and CT scans are stable. I'm relieved.
Does everyone get NED eventually or do some just have tumors that don't grow-and that's okay??
I think about everyone of you ladies. I'm sorry for those who are starting new treatments and having progression.
Welcome to everyone that is new! This board has helped me and the members are top notch.
Into the light congrats on your new grand baby! Pat, thanks for sharing the picture with your granddaughter! You have the best outlook:-)
Cure- I hope your vacation was amazing! When I see my MO next month I'm going to ask about Celebrex. I have PIK3ca. I had been on metformin and baby aspirin for years as early stage to try and prevent recurrence. I kept the metformin but ditched the aspirin for some reason. I think I'll start again.
Also, I got approved for LTD with the policy from my company. Candy, I think you were trying to do this too. I hope it is working out for you.
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Just checking to say hello!! Hope all are doing well!
Gumdoctor, I have been thinking of you & praying for you!
Intolight, congrats on your grandchild!!
Hugs
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PatGMc, thanks for the kind words. You are so right that these are a very special group of ladies and I think you’re the leader of the band. You always have such encouraging words for everyone. I love your upbeat attitude. I need some of whatever you’re drinking to stay so positive. I’ll try to do a better job of staying in touch but I do pray for all of you every night.
As for the plantar fasciitis, these MO’s don’t know what they’re talking about. I had it when I first started Ibrance and I remember our dear friend “Z” complaining about it too. She was a very active runner and into exercise and doing all the right stuff and she got it for the first time after starting Ibrance. It’s definitely a side effect, probably from the Letrozole and other AI’s.
Sleep well everyone!
Love and prayers,
Faith (in the future).
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RE the foot pain. I could just say ditto with one exception. I stopped the letrezole in April and THEN the pain started! I was on it 5 - 8 yrs ago too and experienced it a bit then too. Im just on faslodex now and xgeva.
Intolight. Congrats on new baby. They bring So much joy. Im jealous.
Gumdoctor. I see you on other threads. I know it hasnt been an easy time for you lately. May that all end now.
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Hi everyone. It's good to see everyone checking in.
Gumdoctor, I love your FB posts. Thanks for sharing those.
Pat,
I'm still laughing at your pic. I agree with Faith. Everyone is so friendly and supportive. You were the first one to welcome me.
Infolight,
Congrats on the grandbaby!
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Philly,
I know you work a lot with cupping etc. I went to a acupuncturist last Sat and have been nauseated ever since. Is that normal? Can anyone recommend something that would help other then zofran?
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Simone - I don’t know the answer to your question about acupuncture but I think it’s just cruel that something you tried to reduce side effects causes new ones!
It reminded me - I had my first ever massage during early stage treatment and the next day I got a massive lump in the back of my neck. I was completely convinced that I grew a tumor overnight and rushed to my MO to have someone check it. He said it was a muscle spasm and asked if I had a massage recently. It was such a stressful experience that I’ve never had one since.
Love to all,
Lauren
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Whenever I forget what my job is on this earth I look at my granddaughter and remember. I've had times of sadness thinking I might not be here to see her grown and on her own. Then the candles-on-my-head day comes to mind. She was eight.
I told her when she shaved my head that one day she could make a dessert on it. On this night we opened a can of frosting and all the cookie sprinkles. Slathering that on was fun but it didn't take long and wasn't quite enough for her. When I brought out the candles and matches I thought she would pass out from excitement.
She's fifteen now and counts this as one of our best days. I realize that you can tell them all day long to make lemons out of lemonade but sometimes you just have to show them. She lives her life as though everything can be turned into a fun experience if you just work at it.
That's my legacy.
(I'll share with you soon how she has also made it hers.)
Love from PatGMc
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Love that story, Pat. Can’t wait to hear hers
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I had the foot pain for maybe 8 months. Getting out of bed or standing after sitting was so painful. I would hobble around for a bit and it would get a little better throughout the day, then I’d start all over again.
I treated as planter fasciitis - switched out my shoes (FitFlops saved me as they have a great amount of vision).
And then it was gone and hasn’t come back
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Also re: shoes for foot pain: I would also recommend oofos shoes. i have fitflops that Jen mentioned (awesome too) also but I like the oofos a little better. I buy them on amazon but here’s their website.
https://www.oofos.com/?gclid=EAIaIQobChMIxeKX_fbh4wIVAp6fCh3zEQpkEAAYASAAEgJVbvD_BwE
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simone you probably feel that way bc of the release of toxins. That is quite normal after cupping and massage therapy if you do not drink lots and lots of water to flush out the toxins. No need to worry. How much water did you drink? I would say you should drink at least 2 to 3 16oz bottles within the hour or 2 after the massage or cupping.
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LaurenH, thanks for posting about the Oofos shoes. I'd never heard of them but they look very comfortable so I'm going to try them. I have a spinal compression fracture so I think it's important to walk on cushy shoes! Also, a quick perusal of their website reveals that if you buy them on their website, they donate 3% of sales towards finding a BC cure. Seems their director of brand marketing or whatever has stage IV BC. Unfortunately, the campaign is a 'pink' campaign but I guess that's how BC always ends up getting marketed. In any case, it looks like a win-win purchase!
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Ok I need to vent and get advise from my friends on here. I will probably cross post to several threads to get several ideas from you all. This could be long so bear with me.
I had my MO appt this morning ( last seen 2 months ago ). Follow up from latest CT scan, TM's, and check in. My CT was stable. I knew that from seeing results on patient portal. My TM's have been more elevated last 2 months. Yet again I knew that going in to appt also. I said to the MO that I know they can be unreliable but I still want to do them monthly and could it be progression that is not seen by CT scan yet? She said Yes both- unreliable or progression not seen on scans yet. She then said even if they double next month the insurance would not approve a scan sooner than the 3 month time frame. WHAT??!!!!! I thought if the TM's rise significantly that would warrant a new scan. She said not with my insurance. ????? Really????? So that is comforting.
Then I discussed my positive results of blood test for an autoimmune condition that can increase the risk of blood clots. See thread on Autoimmune Diseases on BCO for the long story of this. She was upset. She said she treats the cancer and it is the responsibility of the rheumatologist that ordered that test to treat this. I was wanting her - hematology/oncology - to handle it all. She said she was able to, but would not since she did not initially order the test. She treats my cancer only. OH MY GOSH !!!!!!!!!
Then I was explaining that I like a doc that I can have a conversation with about my treatment plan. That we can co-manage the cancer. That I do a lot of research about clinical trials, new meds coming for MBC, and stay informed about advancements. She said she has 10-15 minutes for visit and cannot discuss all the trials out there.
How do you all that post on here about having an open relationship with your MO do it????? Am I just not lucky enough to have that type of MO????? I am really upset that she will not see the whole picture of my health and treat the whole situation. And I am fearful that when I do progress we cannot discuss possibilities for the next treatment. That she will say the next treatment is ____ and I am to say OK and not question it. That our "appts" are come in, say Hi, do vital signs, and say Bye.
What do I do? Do I look for another MO now? When progression comes? I try to explain myself in my appts but maybe I am not explaining myself well enough- in that 10 minute appt. And if I do go to another MO, how do I know that the next one won't feel/do the same way??? I don't want to doctor hop and travel around.
Oh my gosh. I feel so disheartened now.
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Intothelight congratulations on you grandson. I love babies such a Joy especially for the grand parents!
Gum doctor and Pat true MBC warriors parties and cake decorated head and all. Encouraging and uplifting. Gum doctor I’m with you all the way praying for best verdicts from the military.
Good afternoon to all have a peaceful day
Tanya
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candy,
I'm reluctant to chime in because so much of this is personal and can only be understood by those living with MBC. But if my mom's MO behaved like this, I would tell her this person isn't treating you appropriately or respectfully. If you have questions, they should answer them until you're satisfied! At the very least, they could schedule a longer block for you to discuss treatment options with them. among the most important functions of their job is making sure you understand treatment options. You're dealing with a very serious condition, and your physician should be equally serious about helping you.
Many insurance providers will cover second opinions. I would say that if you're lucky enough to live near a large treatment center or research hospital, an oncologist there is more likely to be plugged into clinical trials.
Im sorry your MO isn't making you feel heard, but I believe you can find someone who is engaged and serious about treating you. That remark about only having 10-15 minutes made me hopping mad on your behalf!
Intolight, asher is so beautiful!!
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My oncologist told me my foot pain (mostly arches and ankles) was definitely from the letrozole, and told me to take a week off and see if it helps. I've been too chicken to do it so far...
I'm one of the lucky ones who has a caring, thorough, oncologist. If I have a lot of concerns, I ask for a longer appointment, but sometimes things come up - three months ago, just a week after my mother-in-law died, I sat in the exam room and burst into tears. My husband explained, and she stepped out to ask the nurses to let the other patients know she'd be delayed, and sat with me, talking about my mother-in-law (NOT my cancer) for 45 minutes. I love her.
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