Ibrance (Palbociclib)
Comments
-
The things that happen while you're having MBC treatment: poison ivy all over my face! I woke up this morning to red, swollen patches around my eye, cheek and forehead. Evidently, I touched some poison ivy while I was working in my backyard and then rubbed my eye.
I'm in my off week and see MO on Friday. She called in some steroids and said that I should take another week off of Ibrance if the rash is not gone. I'm supposed to start on Friday.
I haven't seen any posts about poison ivy, I guess I'm the first. Any suggestions to make it go away faster?
0 -
Grannax...the steroids will work wonders. I am highly allergic and it's not fun. For a topical ointment, you can't go wrong with Zanfel....worth every penny.
Hope
0 -
Hi guys. I continue to follow this thread with interest. Abemaciclib, for example, is on my short list for the next step. I now have that trial on my radar and will be researching. I was hoping against hope that I would be able to stop all treatment after this treatment in Japan, but that is not the doctors recommendaiton, so I have to figure something out.
Since I am done with Ibrance my current cancer "identity" is liver metster. I am not on any standard treatment at the moment. I do have 2-3 active liver mets so the liver met thread is my new home. . I'm mostly posting about how I feel on this trip and not going into technical details. The treatment is about as close to a spa experience as cancer treatment gets, but anything medical upsets me. I am trying as much as possible to focus on other things while go through this. And, being in Japan, that is easy.
Fightterm, the amazing microbiologist with bladder cancer on Inspire, started a thread to discuss the treatment I am pursuing on Inspire. The 6th post on that thread is from me. I talk about the specifics of the treatment. I will probably continue the technical discussion of the treatment over there where I can get feed back and correction from fighterm. But I won't get to it for a while. Trying to focus on enjoying this trip with my daughter.
Thanks for thinking of me. I read every day.
>Z<
0 -
I'm so happy to hear from you, Z, and pray that you and your daughter have great fun!
Grannix, I agree with Hope that Zanfel is the thing to get for your poison ivy. I'm not sure you can use it close to your eyes though. Steroids are the main deal when the rash is there. I'm so sorry for your misery but amazed that you felt like working in the yard! What a woman!
Today I saw the orthopedic oncologist and had regular x-rays. (I almost forgot to go!) He said the lesions just look like dead tissue to him, that he'll see me in six months and if things look the same six months after that he'll turn me loose! Don't you love a doctor who will speak in hopeful terms without qualification? (I mean, he could have said, "Unless you're dead!", right?!) The spot on my sacrum doesn't show on his x-rays and, of course, he doesn't look at the soft tissue near the sternum. I'm just going to keep believing Ibrance has done more good work on them and they're gone. They were the only two with SUV uptake on the PET/CT at just 2.3. If that happens, I'm pretty sure I'm going to take a month-long Ibrance holiday just in time for Christmas! We'll see!
I'm looking forward to this week's good scan reports, people! Love to all of you.
Pat (1)
https://www.amazon.com/Zanfel-Poison-Ivy-Sumac-Was...=sr_1_3_a_it?ie=UTF8&qid=1507086163&sr=8-3&keywords=zanfel
0 -
Good morning...
Z...Great to hear from you. I hope things are going well and you and your daughter can have an enjoyable time in Japan. How long will you be there?
PatG...Great news! I love optimistic docs. Have you always seen an "orthopedic" oncologist?
Hoping to report good news from my neck of the woods after my oncology visit tomorrow. It will be an Ativan day for me...for sure!
Hope
0 -
Hi. I just wanted to offer encouagement to my Stage IV virtual friends. I am starting my 11th cycle of Ibrance (100) and Letrozole. In Oct 2016, I was diagnosed with recurrent breast cancer; tumor cells in lung arterioles, widespread liver mets and mets in T12. AC was started to kickly kill the tumor cells in lung arterioles. Couldn't breathe. Dying.
One year later, there is no progression and there is evidence of healing. I am stable. NEAD.
So please don't lose hope. Keep on these boards..we will keep you going thru tough times.
0 -
Hi. I just wanted to offer encouragement to my Stage IV virtual friends. I am starting my 11th cycle of Ibrance (100) and Letrozole. In Oct 2016, I was diagnosed with recurrent breast cancer; tumor cells in lung arterioles, widespread liver mets and mets in T12. AC was started to kickly kill the tumor cells in lung arterioles. Couldn't breathe. Dying.
One year later, there is no progression and there is evidence of healing. I am stable. NEAD.
So please don't lose hope. Keep on these boards..we will keep you going thru tough times.
0 -
God Bless you SandiBeach5
0 -
Sandibeach, how wonderful for you to post such encouragement for all of us! May God bless you and everyone here with only good things.
0 -
great to hear from you Z. Glad you are enjoying Japan with your daughter and all the very best with your treatment.
PatmcG great to hear your doc is thinking of signing you off! You have been on ibrance since Jan 2016, when did you start seeing your good results?
Grannax- rash sounds painful. Hope it clears up soon
Sandibeach - what an amazing turnaround! We all need these stories. Thank you for sharing and continued good health to you!
0 -
Lilliemillie, the doctor who may release me is an Orthopedic Oncologist. I'm sure I'll be seeing my Medical Oncologist from now on, regardless of what happens. My widespread bone mets + one soft tissue tumor behind the sternum first showed up in August of 2016. I started Arimidex at the first of September 2016 and Ibrance at the first of October 2016 (delay was to wait for co-pay assistance). [I first had mets on my chest wall in March of 2012. NED after chemo]
Back to the mets in 2016> I had my first PET/CT following 3 cycles of Ibrance in early January of 2017. The scan report said, "Remarkable response" or something similar. The SUV had gone from 11 down to 2.9 on most lesions and down to none on most. The next scan six months later showed only the soft tissue tumor and one lesion on my sacrum with any SUV uptake at all and that was only a 2.3! My oncologist said, "You get that much uptake on a stumped toe." I am encouraged that my next scan at the end of November will show the same or better. Whether it's the Ibrance, the Arimidex, the XGeva or something else entirely, I'm expecting to heal......
However (We all have to deal with the "howevers"!), if things go wrong I know God has this in his hands. New treatments are on the horizon including different combinations using Ibrance. We all have reason to brim over with hope. I'm thankful that we have each other to celebrate the good times and to lift us up when we fear the worst.
0 -
Sandibeach and PatgMc Thank you for sharing your positive results. I'm only on my first week of Ibrance still going up and down the rollercoaster of feelings.
0 -
Maire, feel confident that Ibrance is hard at work changing your cells. Close your eyes, picture that happening and in just months expect to hear good news after a scan! It may be that the bone mets are stopped in their tracks with just dead tissue like mine right now or it could be that you just stop having progression. Either is a good thing. We used to have a slogan in our support group, "If it doesn't grow, it can't kill ya'!" May God give you lots of joy in the months to come.
0 -
Hope, praying that we hear good news from you tomorrow. My MO told me I'd know if the meds are working because I'd feel the difference. So take heart that less pain in your mets area is a good thing!
Leapfrog, clever hack for nail repair. My nails are thin to start, so as I start round 3 of Ibrance hoping for the best. My hair seems dry and brittle. I've read that hair loss can occur at cycle 3 as well.
Pat, woo hoo on good news from ortho onc!
0 -
Pat, I really like your perspective in this. Thanks for sharing
0 -
SandiBeach Thanks so much for your encouragement. It really brightened up my day and my perspective more than you can imagine. I was diagnosed de novo with bone mets in October 2016 and I'm on my seventh cycle of Ibrance and Letrozole. My tumour marker went from 900 in February down to 390 in May but then went up to 500 again in June and has remained there every month since but my bone and CT scans in July showed stable disease and my oncologist is happy with me. Still, I had a nagging feeling that maybe nothing is happening but, on reading your post and others' I'm now feeling more confident that the treatment is scaring those nasty little cells out of their life! Bless you and love and hugs to all my other friends on here.
0 -
Good morning!
I didn't sleep well last night and was up mighty early this morning. The anxiety has taken over. Hopefully, I will have good news to share and "toast" to late this afternoon after my oncology visit.
Marire67...Hang in there. I just started round 4 and I'm still on that roller coaster.
PatG...As always, love your positive posts!!
Jaylea...Thanks for your support!! I'm hoping and praying that the lesser pain is a good sign.
SandiBeach...What an ordeal you've been through! Thanks for all the positive encouragement.
I will be in touch with you gals later this afternoon...wish me luck!
Hope
0 -
fingers crossed for awesome scans and clean sailing, nona. but the the truth is that whatever the scan results deliver, you will deal with it.
>Z<
0 -
Hope, waiting to celebrate with you!
SandiBeach, I add my thanks for encouragement..
Nancy, I am praying for God to move the mountain of hesitation for your mom and replace it with streams of joy and peace. May He walk with you and give you the words to say as you communicate your love and caring for your mom.
I am praying for all as your requests come in. Blessings on a good day for all!
Chris
0 -
Well, I'm back and I think all is okay. He was pleased with my scans and thinks the Ibrance/Letrozole are working. He tried to explain some "flaring" on the scans, that it's usually a sign that the cells are dying. I'm not sure I understood. He said my lungs looked good on the CT and there were no new spots. He doesn't want to take a chance with Zometa, so next month (after he gets approval) we will try X-geva, which has more gentle side effects than the Zometa.. So, I guess this is good enough news to "toast"...what say you?
Hope
0 -
That is good news nonahope.
0 -
Hope, Yes, indeed, start that toast! I think your news is very good. WOOHOO! I am doing the happy dance for you right now, and I have a big smile on my face. Go celebrate.
Hugs and prayers from, Lynne
0 -
Definitely worth celebrating Hope! That is very good news!
My neutrophils did not budge after a week off, and my wbc went down. So 3 neupogen shots this week. Yesterday, I got the 1st. So tired! No sleep last night, too much pain. This morning, another shot. The pain is terrible! Flu like symptoms. Chills. I called the nurse and she said take tramadol for pain and monitor for fever. I don't know how I will handle a third. I am so envious of all of you who are able to take ClClarita.I am miserable.
I am so happy for all of you who had good scans!
Hugs and prayers,
Claudia
0 -
Hope, I say that sounds like a whole lot of good news, my friend!! Remember that in the Ibrance trials having no disease progression was the measuring stick for success. The fact that you also have dying cancer cells is a bonus! Congratulations and may you enjoy this beautiful day that God has made just for you!
0 -
Thanks for your responses. Sometimes, my doctor talks too fast when explaining things and I walk out of his office thinking "what did he say/mean"? I had never heard of flaring before today. I know I can count on you gals to explain things. I am so grateful and blessed.
Hope
0 -
Toasting here, Hope.
0 -
Hope, that sounds like good news to me! Have that toast to yourself! Enjoy!
0 -
Hope, this is from an Abstract of an MBC case. Explains "flare phenomenon" which also happens with lung tumors (and probably others):
"Increase in radiopharmaceutical uptake is an indicator of progression of disease. Paradoxical increase in the radiopharmaceutical uptake also occurs during favorable response to therapy, which is designated as flare phenomenon. Flare phenomenon is well documented on bone scinitgraphy when initially noted lesions show increased radiotracer uptake after therapy is instituted. This happens despite favorable response to the treatment. The osteoblastic activity associated with healing response of bone tumors is the cause of flare phenomenon. Recently, metabolic flare phenomenon has been described in patients with breast cancer who undergo hormonal therapy. Changes in the hormonal level during initial part of the treatment is the cause of metabolic flare. We describe a patient with bilateral breast cancer who underwent second line chemotherapy along with bevacizumab. Serial positron emission tomography scans done showed interesting phenomenon of metabolic flare."
0 -
So, my mundane poison ivy looks more like an infection today. I actually emailed a pic of my face to MO, I got a call right away. She called in antibiotic and more steroids and I go see her tomorrow.
I've had cellulitis before so I know what worst case scenario looks like. I no longer think it was poison ivy. It's not going through the stages PI goes through. It looks more like cellulitis, bright red, spreading, hot to touch and my eye is swollen shut today. But, I only have a low grade fever not high like my previous encounter. I had to have IV antibiotics, that time, and was hospitalized for 5 days.
For sure I won't be starting on Ibrance tomorrow. I know that's not a long term problem as for treatment. But, I seriously hope that the antibiotic will be enough. I know how fast cellulitis can spread. If I do need IV antibiotics, I hope my MO recognize that and admit me.
Another day in the life.......
0 -
Grannax, I will double up on those prayers. Be well, my friend.
0
