Ibrance (Palbociclib)
Comments
-
Hi ladies,
Rosevalley - yes it's Hummingbird, with the belly mets.
I'm going to be jumping back in on this thread. I see many new people here since I was on Ibrance last summer and fall. And I'm very happy to see some ladies still posting here and having success with Ibrance! My Mom is also stage 4, and we just saw her oncologist today. Her scans show progression (spleen now). She also has metastases to many lymph nodes, pancreatic tail, and bone. This will be her last treatment before IV chemo and we sure hope this works for her for a long time! I really liked the Ibrance/Femara combo. Found it to be the easiest of all. My only se was headaches which Advil took care of. Unfortunately, I had a lot of progression after 6 months and moved on to Xeloda briefly and then Taxol which I'm finding very doable.
My mom's MO said her cancer center has ladies on Ibrance who are doing very well and having a long success on it. Best wishes to everyone!
0 -
Hi Rosevalley - Welcome!
Hummingbird - So glad to see you!!! Hope Taxol is treating you ok. Sending warm wishes to you and your mom!
0 -
My MO received verbal feedback from Radiologist today from CT scan done yesterday. Was told two areas of concern were two nodules in lung with an increase of two millimeters each. Hilar node was original biopsy that showed malignancy. Mo stated no other areas of concern on this past CT meaning node was normal I think. Waiting for full written report. MO says wants to continue on letrozole/Ibrance and rescan in two months. If two nodules continue to grow wants to try and biopsy. Any thoughts of progression of two millimeters? MO would not give any feedback on level of concern at this point. States not sure at this point what is going on. Anyone with similar experience?
0 -
Moissy, thank you so much! Hope you are doing well, too!
singlemom, I've had scans that showed the possibility of progression but my MO, like yours, chose to wait 2 to 3 months to see what the next scan would show before doing a biopsy. I hope your next scan shows no need for a biopsy. Best wishes.
0 -
singlemom -
2 mm is within the error of most CT scans. IOW, if you had a CT scan done twice in one day, the results could vary by that much. This article is a good discussion of CT accuracy.
If i got your radiology report, I would call myself stable and celebrate.
And remember that people who are stable and people who are NED have pretty much the same survival outcomes.
>Z<
0 -
Hi Rosie! Sorry faslodex didn't work long but it got you this far. Ibrance will get you farther down the road. Definitely take it with a meal. I had to add Prilosec. Had some SEs the first month and was dropped to 100. But now most are gone and liver spots disappeared! It's good stuff and pretty easy once you adjust.
Just pull out your bag of tricks to get through this first month and then SEs should go away. My strangest one was chocolate tasted yucky and could only taste the carbonation in sodas. Craved fish and veg. Dairy didn't agree with me first month but Prilosec is a miracle drug. Even makes puking pleasant!
I have more shedding but still having to shave! Arghh but it's been cold and rainy here. My eyelashes are stubby and my hair floppy. I got a short cut that seems to work.
Walking does help with the fatigue. Sounds crazy. I did notice I got slower later in the cycle. Just listen to your body.
Good luck! You're my hero. You are one determinedlady.
0 -
Thank you Hummingbird and Zarovka,
Zarovka I read your attached link and there was some very helpful information on it regarding nodules and cancer, thank you!I don't think I was very clear on last post though, it was only 1 scan done on Monday. They compared it to previous scan 4 months ago. Hummingbird, have you had your next scan yet? Did they see more of an increase?
0 -
Good morning ladies!
Just wanted to check in and say hi! Just finished cycle 9 of Ibrance/Femara last night, see the onc next week and then should get a new set of scans soon. This is my first line of treatement, I was dx de novo, so nothing to compare it to, but it has been pretty doable.
Hummingbird, so nice to see you, glad mom is doing ok too!
Rose, welcome!!
To everyone else, sending love and good thoughts!
Alissa
0 -
Alissa, thank you. Im so glad to hear you are doing well! Wishing you the best with your scans.
Singlemom, sometimes the following scans showed there was no reason to be concerned. But a few times now, for me, unfortunately I did have progression. But my MO doesn't like to jump too soon and sometimes - wait and see is best. Good luck. Hoping it's nothing and praying your next scans show a decrease in mets or NED!
0 -
Thank you Hummimgbird
0 -
Hummingbird Hi! I was so thankful to hear you did ok with Ibrance. We are very similiar in our ILC presentation. I want this to work for me - for my kids and DH and my fur family. I need to be here for my 15 year old. We also have a geriatric household of old pets 3 cats and one dog(ages 15, 13, 11 and 8) and I care for them.. thyroid meds, walks, appointments etc.. It's hard for my DH to work full time and care for everything.
I am sorry to hear your Mom has BC too. Sounds like our family. My grandmother had IBC, Mother's sister IDC, Great Aunt with premenopausal BC then ovarian cancer. So far I am the youngest to get BC at 48. I am now 57. I feel fortunate to have lived long enough for Ibrance to arrive on the market. I tried to get it before I got ascites (2015) but was unsuccessful. I have xeloda yet to try as well. I started that in Dec but got a partial bowel obstruction and couldn't swallow the pills. I vomited everything. They tried Doxil and Herceptin but neither was successful. Faslodex worked to turn me around and I will take that with Ibrance.
Zills I take prilosec already and reglan 3x day. So I hope and pray gastric issues will be small to zero. I just popped my capsule. So here goes! Bummer that chocolate tasted bad.
I read everyone's suggestions and think the evening meal might work. I figured I will try this for 3 weeks then at my break if it isn't working switch to a different time. Zarovka, Moissy, Singlemom and everyone else whose name I forgot - thank you for responding with timing, side effects and for the welcome. I have learned so much from others sharing about treatment on other threads. I hope Ibrance works for us all!
0 -
Zarovka, thank you for sharing (a couple pages back) what you have learned about scans, and for the links. It has helped me not panic. My last PET-CT report, regarding the liver, had words like "some mildly increased activity" and "somewhat increased in size" along with all the rest that was unchanged since complete metabolic response was noted about 1 1/2 years ago. I was extremely upset when I read these possible new developments. My doctor talked to the radiologist, then told me that the changes are subtle. Too close to call with certainty. So we will see what the June scan shows. I am worried because of a rise in TMs from teens to twenties to thirties. Again, not dramatic or out of normal range, but worrisome in combination with the scan and some occasional mild pains. Keep calm and carry on.
0 -
Not necessarily wanting to get too far off the Ibrance topic for too long, I have tried posting to a thread I created a while ago about integrative oncology. So maybe whoever is interested would like to go into more detail there?
0 -
Rosevalley, you certainly have a lot to deal with! I think of you often and I am hoping and praying that you have a great success with Ibrance and that it is an easy treatment for you. Yes - we do have a similar ILC situation. And I also tried Xeloda as you did, in December. I became terribly sick, as you did. But my MO thinks it might have been due to all the belly issues I had going on at the time. She told me at my last visit that she might want to revisit Xeloda in the future. I am skeptical about me and Xeloda!
Best wishes to everyone! Hope you are all doing well.
0 -
Hello all, I guess we are going to try adding Ibrance back to my regimen at a lowered dose. The first time 6 months ago elevated my liver enzymes. Now that they are back in the normal range we are going to try again. I am glad as my TM's rose this month on Faslodex only and Ibrance did help shrink my liver tumors the first time although it was coupled with Femara before. Not looking forward to the SE's I experienced before but hopefully the lowered dose will help with that too. Won't start until mid-June after my next scan but want to jump back in here now to keep up.
Hummingbird, I'm so glad to hear you and your Mom are doing OK! I hope the Taxol does the job for a very long time and your Mom finds Ibrance to be easy as well. I did pretty OK except for the extreme fatigue in the 3rd week.
Rosevalley, You do have a lot of challenges on your plate. Thinking of you as you start this new Tx and hope it kicks ass and works for a very long time. You deserve a big fat break. It worked well for me except my liver enzymes. Some people's enzymes shoot up on Faslodex which mine did not! Weird how we are all so different....
0 -
artist, Thank you very much. I remember when you had to stop the Ibrance. Hopefully when you restart now at a lowered dose, you will be fine. Keeping my fingers crossed!
0 -
Hi Artist - Welcome back! I'm so glad you are getting another shot at Ibrance! I'm still on 75 and side effects were much less for me. Hope it goes better for you this time.
0 -
Hello again to everyone, I've been away for a bit having taken our first short trip since my diagnosis. I was very anxious about it for some reason, not knowing how my body would react since I'm not a great traveler even though we have traveled quite a bit. I didn't want to miss going to our granddaughter's graduation from college and miss seeing her and her family who live 2000 miles away. It was great to be there and I managed but it was exhausting since we were in an earlier time zone and having to get up even earlier for a couple of the ceremonies. I did have some issues with ankle swelling after four days of car travel. Three days later they are still swollen, does anyone else have this issue?
I am wondering about a couple of things I've read here. A couple of you say that you take the meds at either breakfast or lunch or within a five hour time frame. I was told always take it about the same time each day. Did your onc's approve switching it up? It would certainly make my life easier if I could, since some days I need to get out of the house earlier than others and drinking so much water with the meds is a problem.
I also noticed mentions made of more than one MO, how do your onc's deal with having someone else on your case? It seems to me it might cause some issues if there are different opinions about things. Also, what does a complementary onc do for you?
I am going for a second opinion back to my original onc from 25 years ago as she is still practicing. The reason I didn't see her in the first place is b/c this onc is much closer to home and has a great reputation being the director of the center. However I've just gotten some mixed messages from him. Two months ago he said that b/c of my fatigue I could either drop to a lower dose or stop the Ibrance and just use letrozole to keep the cancer at bay since I had a good response after 3 doses and my cancer is slow growing. This past visit, he said I should stay on the Ibrance 125 mg as long as possible? Why the change of mind? We were so surprised by this that neither my DH or I asked many questions then but we intend to on the next visit. Here, I was looking forward to going off the Ibrance and now he's talking about years of this. It's very depressing even though this is easier than chemo and I'm grateful to have these new meds for treatment. I even feel bad complaining since so many of you have been going through so much more than I am for so much longer. Sorry, I just needed to vent, thank you all for being here to listen and for answering my many questions.
0 -
Hi all
When I got my diagnosis I decided to move to simplify my life. My house needed renovations before it could be put on the market. the move and the renovations all came to a head in the last two weeks. it would be exhausting even if i weren't on pablociclib. it would be exhausting if i weren't on the third week (of my fourth cycle). but as it is i am really tired and half brain dead while i push through this. What a tough week.
But reading about all you guys working and carrying on with your lives through treatment makes me think this is probably doable.
Payoff will come this summer. I will have lower expenses, a smaller house to keep clean and a nice landlord who does all the yardwork.
>Z<
0 -
Zarovka - you can do this. When I finished chemo in 2013, I sold my house with a "giant water bill" pool and moved to a townhouse on the water. Better view and no water bills! You are stronger than you think, and a new smaller home is a terrific idea. Get extra help with the final renovations and movers as needed. I had my sister + her husband come out for my move after 20 years in the same house. That extra boost kept me going. Tonight finished round #5 and have a business trip in June, but will take an assistant along so I don't over do it. I'm working full time and hope to continue to do so for a long time. Stay positive. Rosevalley - thinking about you as I chugged my Ibrance down with lemonade and dinner. I hope this is a magic bullet for you and all of us. Faith - I use compression stockings when I fly, it helps with swelling. Check with your onc if ankles are still swollen. Artist -what strength are you on now? Rooting for you!
0 -
Faith, I know what you mean. My old onc did the same sort of thing with changing recommendations with no explanation. One visit it was we'll add zoladex soon, the next visit it was all you need is tamoxifen. It's like he didn't remember me from one visit to the next.
Hi there, Rosevalley, Hummingbird, & Hummingbird's mom!
Artistatheart, I'm glad you get another try at Ibrance. Are you going to take the 75mg?
0 -
Faith, I just returned from a trip. Plane plus seven hours in a car and my ankles were swollen too. I've developed neuropathy after 6 months on Ibrance and I think that may have contributed to the swollen ankles too. Keep your feet elevated when possible! And maybe some ice for a few minutes?
I also have a second MO that I bounce things off of, especially when a change of treatment is necessary. My primary MO isn't aware that I'm cheating on her! I don't see the second MO often, but it's nice to have a second set of eyes on my case.
Wishing you the best!
Rose.
0 -
Faith- when we travel by car my MO always reminds us to stop every 1 1/2 to 2 hours to walk around. My DH is very good about this. Car rides are hard for me anyway because of my spine mets. But, it's worth it to get out out and enjoy some travel. I've only flown once in the past year, but again needed to get up every 1 1/2 hours. Be careful about blood clots!
Best wishes to all. Good to see some of the past names catch up with us.
Tomorrow I take my last Ibrance of this cycle which ends ONE YEAR on it. I see my MO Monday. As I've said, TMs sigficantly raised (after early significant drops) the past few months. I've also been very, very tired the past 2 months. If, after scan in 2 weeks I stay on Ibrance-Letrozole I think I will see if she will drop it to 100. I've been on 125 the whole year and my last 3 months counts have been rock bottom. Already have next month's supply- so maybe after that.
Hope everyone enjoys the weekend.
0 -
Hi chicas,
After being on ibrance/ letrozole for almost a year my scans are showing a little progress and my TM are very high at 300.
My MO Florida wants to see me asap. I'm a nervous wreck.
Chee
0 -
My tumor markers are in the 800s and won't be drawn until next week. So far I don't see any side effects but I have only taken it 2 days. I have neuropathy in my feet and sometimes it flairs up usually when my feet swell and pain meds take care of it. it should be interesting to see if Ibrance effects that. It is encouraging to see others taking it for a year at 125 mg and doing well. I hope for that.
To all of you staring down changes in scans that's hard. I hope it goes well investigating new treatments - may the new drugs work for a long time. Good morning to all of you.
rosevalley
0 -
Theziz- we did start at almost the same time. Deep breaths and prayers for good news-even if it's a new treatment.
0 -
-
thanks Chicas
0 -
Every time I spend more than 3 hours a day in a car I get sick. I walk once or twice a day, but moving and walking in small amounts frequently during the day is important too. This stuff builds up in the system.
It does make any sort of travel hard.
0 -
Kaption, congratulations on one year on Ibrance!! Sorry to hear that you are very tired and your TM have recently increased. I hope your scans in 2 weeks show no progression and hopefully you can continue with this combo for a long time! Wishing you the best.
theziz, I hope you can continue on Ibrance after you see your MO, but if not - may your next treatment be an even longer success for you. Good luck.
mike, thanks for posting that news article. I've already passed it on to my Mom as she will be starting Ibrance tomorrow. She was so glad to read that!
Hi ShetlandPony!
Have a nice weekend everyone
0
