Ibrance (Palbociclib)
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Might as well try MSM. According to an 2012 NIH paper, it was shown to suppress breast cancer growth in mice. Maybe it has that effect on us too.
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malebreastc - Glad to see you back and even more glad to hear of your current status being so good! Wishing you continued success with the fulvestrant and Ibrance.
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Can my situation be termed as NEAD or NED ?
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Chicagoan, I also had to give up the nail ridge "filler" polish, if you wear it for a long time then the nailbed is really dry when you remove it…
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malebreastc-I think that is a question for your doctor. Congrats on your results.
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@malebreastc I agree with Chicagoan , ask your oncologist .
My petscan / ctscans have a recap and it states "no evidence of active disease" and above that different areas are listed :
lungs: unremarkable
abdomen: unremarkable
etc etc
HOWEVER- as we have had distant spread we know cancer cells are in our blood stream or lymphatic system microscopically. It's awesome to have clear scans or stable scans (areas of Mets staying the same / not growing or spreading ). We stay on treatment as the cancer cells are out there . Currently kept under control but the cancer can/ will morph to resist treatment.
I'm not trying to be a downer but this is our reality . Celebrate every stable/ clear scan!
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@malebreastc ask your oncologist. My first oncologist said I was NED. My new oncologist says cancer calls are probably hiding somewhere else in my body but may ar may not come alive. We won't know until we know. So for now I am doing everything I can to enjoy life. Much more realistic now that the knee pain is gone.
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@malebreastc that's wonderful news. Congratulations and wish you the very best ftom hereon......
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Just checking back in. I know I have been quiet lately. I started back on Ibrance almost two weeks ago. The side effects have been like the first time I took it last year. Hopefully that will get better. Walking has improved greatly. It has been a hard road but the pain is gone. It is still achy and gets stiff but I am told that it will take another month or two to completely heal. My biggest issue is fatigue from both the surgery and Ibrance that has interfered with my red count. Blood test next week hopefully everything is good. Doing two on one off. Also having a series of low red blood count studies done.
Hope everyone is doing well.
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brutersmom, it’s great to hear how much better your knee is!
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Being discharged from Physical Therapy ob Thursday. They feel it is safe for me to go to the gym and add more variation and strengthen to my exercise program.
Wednesday is my first round of blood work after starting Ibrance again.
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Brutersmom-Glad you can get back to the gym. Life will start to feel a little more normal.
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Brutersmom- I agree with Chicagoan , good for you !! So happy you have recovered well from surgery and returning to the gym will help you get back to "normal" .
I joined a gym to start adding weight training . I walk a couple of miles a day but can also do cardio at the gym .
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I am back in Ibrance again. I just got my labs back. What a mess. Along with the cbc and metabolic panel, I had a ferritin and an iron study. My BUN was high. My transferring is low. Also low are my alt, chloride, sodium, white count, neutrophils, red count, hematocrit, and hemoglobin. I have no idea what this all means. I just know that it explains why my energy just doesn't improve and maybe even why I have lost some bend in my knee.
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We’ll, crap, brutersmom! What did your MO say about your labs?
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I will let you know. They came in around 7. Quite unusual. I get them drawn at 1:30 and they are ussualy back by 4. Today they were quite late.
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I saw my MO last week. I've been on Ibrance for 18mos without progression. Good news for sure. My labs are strange but I've stayed above the level I need for continuing.
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Good to hear, Wren!
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brutersmom, I probably mentioned that when I was on Ibrance and then switched to Verzenio, my red blood cell count continued to drop and even when the drugs were discontinued, the rbc did not recover on their own but actually continued dropping!. I needed a blood transfusion which I got and began to immediately get some strength back. My blood work was all over the place, too, when I was on those two different meds, with liver and kidney blood tests all wonky. I’m not sure it even indicated much because four years later and now being on Xeloda, my blood work is basically normal. For me it seems the Ibrance and Verzenio were causing the skewed numbers but once I was off them things returned to normal. Perhaps that means the drugs were hard on the kidneys and liver but didn’t do any lasting damage?
Glad to hear things are going well for you, wren!
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I was going to leave this group since I'm no longer on Ibrance. However, I couldn't bear to not stay in touch. I think I left the Arimidex group, but think I'll stick around.
The good news is that I was able to take my mostly unused box of Ibrance to my appointment on Wednesday. Perhaps they can donate it. The Arimidex bottle was opened, so I guess they'll just destroy it.
Now I'm on Truqap and Faslodex with quarterly Zometa infusions. MO is not sure if the Truqap is working as my tumor markers are continuing to climb. I've had a persistent headache for over a month. MRI schduled for the 19th, PET scan on the 22nd.
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Sunshine-You don't have to leave-many 'alumni' continue to post. Hope that the Truqap will work and that horrible headache goes away. Must be nerve-wracking waiting for the MRI.
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@sunshine99 I agree you should stay. You still have experiences to offer that can be helpfull to people. Friday I have a bone scan. There is always a concern but for now I am not really worried because my last CA27.9 was the lowest it has been. Probably helps that a lot of pain and inflamation has gone away since the knee surgery. Not to much happening still exhausted. Not sure if it is from low red numbers. Recovery from knee surgery which I hear people say it takes a long time to get energy back or Ibrance. As a result I am plugging along trying to stay healthy and have fun
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Had a bone scan today. It all came back good. Even indicated all the uptake in my lung had resolved and no uptake seen in soft tissue. Kidneys and liver were clear. I guess I am ok on the cancer side but my joints showed significant degenerative change especially my right knee. Left knee had all sorts of uptake but unless the orthopedic has a concern, I am ignoring that. One good thing was I had no anxiety about the scan. Probably because my CA27.9 came back 2 weeks ago the lowest it has ever been. That test I gets me anxious. Probably because it dropped steadily and my ctscan came back negative when it continued to drop below 38. I do work out regularly so I guess that helps manage the pain.
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@brutersmom Hurray for great scans. Got my soft tissues scan in portal and it was very good. Somethings resolved, somethings greatly improved and somethings stable. I'll take it. I suspect somethings from last bone scan were misread as I have severe inflammation and that particular radiologist kept saying increased uptake here, there and everywhere. He never mentioned that I have MS and I am loaded with inflammation. Here to party today…In pockets for all scans and life's special needs. Guess Ibrance is still working very well for me. It's been one year diagnosis this week. and 11 months on Ibrance.
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Hi everyone. How are you today? I haven't chatted for a while because so much was going on, I just felt overwhelmed by everything. But I've been following the discussions. @brutersmom, so glad your recovery is going well. @irishlove wonderful to hear I rance is still working. I've been on it 3 1/2 years now. @divinemrsm your katest update gives me hope coz ibrance has been a challenge the last one year... @sunshine99 I hope you'll stick around ❤
I've had an active few weeks...
Headaches and cloudy vision while using my laptop had me worried and made me just think right!! This must be "brain mets". But I took it easy, first saw an Opthamologist who gave me drops for edema in my left eye, then diagnosed Ocular tia in my right eye and told me to consult me MO about it. He gave me zero information on it. When I looked it up I panicked. But still decided to consider my next move rationaly. With all that going on, I developed mad pain in my lower body, all of my hips and below was ALL on fire. I saw a GP and after blood and urine tests it turned out I had a UTI. So I've been and completed a course of antibiotics. After which I decide to address the headaches issue with my Neurologist who referred me for a brain MRI. Results emailed same day indicate partial empty selar. My Neurologist is away this whole week so I have to see her colleague tomorrow afternoon after my MO for my MBC review. But I've Google (of course), and it doesn't look good to me. But, I'm looking forward to tomorrow for the final verdict. Anyone been here? I read its a pituitary gland issue. So, tomorrow's the day.....
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@Rosebessie you've really been through it. I wish we knew who was supposed to be in charge. It's like we have so many doctors and they don't talk to each other. It's frustrating.
Carol
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Great news on your scans Irishlove and Bruters. Hope things ease up RoseBessie.
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@sunshine99 - please keep posting on this thread! Sending you good thoughts and prayers for your MRI tomorrow. Hoping Truqap is working well and they figure out your headaches and they aren't related to bc.
@divinemrsm good to see you post, too! Once an ibrancer, always an ibrancer! It sounds like you are doing well with the new hip and current treatment which is fantastic.
@brutersmom and @irishlove , hurray for good scans!
@wren44 also great news that you are doing well on Ibrance for 18 months now!
@Rosebessie I am sorry you have been in pain. I am glad you sought help with a neurologist . Hopefully they have a treatment for the pituitary gland issue ready for you - let us know how it went today at your appt.
@chicagoan always good to see your posts and you continue to be an inspiration to me :)
I had scans on 3/11 and met with my oncologist today. My scans continue to be all clear and blood work looks good (low anc/ white blood count but that is my new normal on day 28 of Ibrance). 4 years and 4 months on Ibrance/fulvestrant .
I am looking forward to Easter and my 60th birthday on April 1st!
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Hiya @sunshine99, @aprilgirl1 and @chicagoan and everyone else.... Hope you're all doing well despite our tough calling 🙏🙏❤💕
Yesterday I saw a new MO for a second opinion and decided he'd be a worse deal than my current. While we were familiarising, he made a statement "you either do it my way or else what are you doing in my clinic".....a statement that shocked me. So one thing is certain, I'm not changing MOs;, at least not yet and definitely not to him if ever. He was glossing over everything I said as well. Really upsetting. So back to my original one next week.
After 4 hour wait, I got yo see the available Neurologist since my regular one is away. He says the partial empty selar is nothing to every about and my results are fine. Told me "Go home snd enjoy your life". Yeah right. That's easier said than done when you have MBC, but I shall try. I showed him my TBC he says "they look OK, nothing to worry about" (NB My Neutrophils were 0.7 and WBC 2.4😱😱), when I asked about the ocular tia, he dismissed me and said there's nothing to worry about. Didn't even mention the need for medication. So here I am on my off-Ibrance week, determined to take it easy and hoping I don't need to get an immunity boosting injection or antibiotics. But, knowing its my body and my life.
Oh yes, ladies, ever since I started treatment they've slways given me Neupogen injections snd antibiotics during my off treatment week. I was told it's for prophylactic purposes, to prevent possible infection. Only recently did I discover that's not a mandatory part of the treatment plan. My worry is that my body has never been taught how to build back its immunity independently. I fear its may be too late coz now I feel I'm too dependent on the injections and antibiotics ........ especially the antibiotics coz I fear getting antibiotics resistance. I'm between a rock and a hard place because I know what I'd like to do but I'm scared. My MO would support me with whatever I chose but, it's frightening because I've learnt from here and the Zoom group that there's people who've never used either, and yet at the same time, the ibrance user leaflet/instructions actually recommends both the Neupogen for grade 3 and 4 Neutropenia, (right now I'm grade 3) and antibiotics. All to avoid Neutropenia which is not to be trifled with 😖😖😖.
Any opinions on this?
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