Ibrance (Palbociclib)
Comments
-
Here is a snippet of information that does not apply to anything at the moment, but could be helpful to remember in the future.
Venetoclax is an inhibitor of the BCL2 protein, and an early stage clinical trial has shown it works well with few side effects on ER-positive MBC, so there is some excitement that we may get this targeted drug. CDK7 inhibitors are a different drug also predicted to be very helpful for MBC following progression on Ibrance-Femara type protocols, but we don't know a lot at the moment about side effects for these.
This new info snippet comes from trials on leukemia, where they are finding that when the cancer progresses on Venetoclax, it uses a pathway that depends on CDK7. Therefore they predict that it would help to have the CDK7 inhibitor when taking Venetoclax. Alternately if you Venetoclax, you may want to plan to move to a CDK7 inhibitor after progression. Something else for the list!
https://www.sciencedaily.com/releases/2019/05/1905...
0 -
Yep, fckd. But could explain Joe's results. Dammmmn Didn't know anything about glutamine. For what it's worth, Dr Axe explains it quite well.
0 -
Maybe they should study healthy non cancer people and see what their immune system does that ours is not doing.
0 -
Cure-ious, do you work on research directly pertaining to mbc?
0 -
skyguy- nope, I'm just a simple country biochemist...
0 -
that’s interesting, so you happen to be studying cdk12? That’s fascinating. I’m glad a great mind like you is working on this
0 -
well, not me, but some colleagues have worked on the (famous-to-us) kinase!
0 -
My onc who never gets excited about anything, and has never volunteered any info i.e. I have to drag it out of him, mentioned cdk12 ... Will def. press him for more details now
0 -
Hey hey all. Just checking in. Good discussions as always.
Report from here---
On the measles issue--- someone mentioned I should check with my HR department at work for their records when I was hired (26 years ago) about my immunization status. Their records were iffy so they offered to do a titer blood test to check immunity. Yeah, I am immune. So no concerns there. Woohoo. I am going to give my PCP and MO a copy of the results.
My nephew is graduating High School this Sunday afternoon. My plans are to attend the graduation ceremony and then his parents (my sister) is having a get together with food after. I just hope I feel well enough to enjoy all of it. I have church service that morning also, so Sunday is shaping up to be a full day. I don't know about all of you, but I wear out easily anymore. It doesn't even have to be physically strenuous activity---all of this-church and ceremony- is sit down activities. I sure don't feel like I used to and it ANGERS me. I want my old life, my old self back.
I have been having a lot of pain lately--those feet/heel pains like I had posted about (either in this Thread or the Bone Mets Thread, I forget), pain in my back/spine going down the arms, and even some pain in the sternum. Rheumatoid arthritis, bone mets, or side effects of AI's ?? Who knows. But it is getting to me. And the constant pain and fatigue is messing with my emotions. I feel like I am on a roller coaster---yesterday was my day off work and I wasn't hurting in the morning so I was lightly cleaning house. Good mood. Then by last night I was tired and hurting some (not at its worst) and I felt like crying. Does anyone else here feel like their emotions are all over the place??? And of course, talk of the future makes me melancholy. With the graduation coming up and discussion of my nephew starting college in the fall I feel sad. Of the uncertainty of how long I have left and not getting to see him become a man, of thoughts of my own graduation and how I felt when I was his age. DAMN THIS IS HARD.
Sorry for the depressing talk.
Keep up the good conversations. Has anyone heard from Jaylea? Hope she is doing well.
0 -
Candy, sorry about the pain. Exercise? I wouldn't know about that.
Jaylea posted on the Weekly Taxol for stage IV thread yesterday. She seems to be doing a little better. She had a scan and is having trouble getting the results. Sounds familiar.
0 -
Jaycee-- I have been trying to walk on the treadmill for 20-30 minutes a day (on my days off work). I know ichangedmyname posts that exercise is good--releases endorphins and lowers bad hormones. But when I am hurting, it is hard to feel like walking. Also, I don't get the "good feeling" after getting done. I hobble thru with the heel pain. And after walking I am tired. And if I sit down to rest after walking when I get up I am stiff and sore all over and hobble even more. I have been doing exercise-treadmill walking-for a couple of months now and I don't feel any better overall. I will continue because I know it is good for me, but I don't FEEL like it is helping.
0 -
Candy, I am right there with you--so don't feel bad about complaining. I don't have the heel pain but my back, arms and shoulders hurt most of the time. I had a scan yesterday so should hear Monday (my 3-year cancerversary) how things are progressing. My emotions also run rampant. I have a new grandson due in August, and with the other 3 grandkids (age 5 and under) I bemoan the fact I won't be able to see them grow up and cry at random times.
You do more than I do. I try to do something physical everyday and allow that to count as my exercise whatever the activity is. For me, grocery shopping, going to church, taking my DGD to the park, laundry, or going in for labs etc. all count. On days with no extra activity I sometimes try to walk for 20 - 30 minutes but I am retired so I have the time. It is all I can handle. I do cook dinner most nights but my daughter has to clean up as I am spent by then. I can't bend over long enough to even fill the dishwasher or wash dishes. My DH and I (plus a good friend) cleared out a large storage unit this week. I am exhausted even though all I did was sit and let the guys bring me boxes to quickly go through before they carted them away to the Salvation Army, but mentally I am better as it has been weighing on me for a long time. It is time to let all of that extra stuff I haven't touched in 5 years go. (We went from a 3600 sq ft home to a 1600 sq ft condo just prior to my dx.) Next task is to organize the condo so what we did decide to keep fits. If not, more goes. This stupid disease has forced me to organize and clean out--perhaps a silver lining.
0 -
candy- it may be the letrozole doing most of this. I took arimidex for 4 years after the chemo ( which did a number on my muscles too) and for about 2 years I was so stiff- had to stretch multiple times per day to walk up the stairs. It got better but I also took 600 mg of Motrin every night. You might be better with a different hormonal- some people think it helps to change, some don’t.
Yoga has relieved so much of my pain
0 -
IntoLight- Well the silver lining is the cleaning and clearing out thing. I am a neat freak so I am all about organizing. I think counting all those errands should count as exercise. You are staying active and doing what you can to stay involved in things (church, park, etc). The emotion thing is weird. I don't think my old self was too emotional. But I am now. I look at things differently now, like through a different lens. I am praying for your scan results. Please post an update.
Nkb- Yes it could definitely be the Letrozole. I just hate to change meds when my CT shows stable. And changing to another AI may not help after all. I guess I think that with MBC cancer I should not feel great. And I may feel worse in the future as things progress, so I shouldn't complain too much. I tried yoga (pre cancer me). I didn't like it because I could not do some of the poses with the class due to my lower back issues (disc issues from way back when). So I would just sit and watch the class until they did a pose I could do.
0 -
I agree with you, Nkb. Anti-estrogen/aromatase inhibitors cause stiff joints, feet aches. I have them, too. I don't want to sound preachy, but lets all give ourselves a break. We don't need to be superwomen who get their self-esteem from multi tasking all day long. It is okay to do less. And like intothelight says, keeping active is the key, and its okay if the activity is low key. One thing that works for me is to be more active one day, then the next day, be more laid back, then repeat.
When it comes to getting stuff done around the house, I try to work smarter, not harder. If I can figure out a way to simplify a task or decide that my minimal effort put into something is good enough, I give myself credit for being smart about it. At the end of the day, I reflect on what I got done and not what I wasn't able to get to. We don't have to be those 1950s ladies who were judged by how clean their houses were and how slim of a waistline they had.
Sometimes I find I put too much pressure on myself and when I realize it, I make adjustments, cut back on things, take a break from all the responsibility. It really is about quality of life and not just being productive,
0 -
Divine- So true. I know I compare myself too much with others my age. I have a friend that is 5 months older than me. He does not have cancer. He works 6- 8 hour days a week, takes a college class 1 night a week, and gets to bed at 11pm-midnight each night. I talk with him often and I feel funny when I recap my day (day off work) of light housekeeping and treadmill for 20 minutes. And that I am bushed and go to bed early. He knows of the cancer. I just feel like a wuss since we are the same age and I "look healthy".
0 -
candy- if you are still interested in yoga- go to one for people with back issues or a restorative yoga class. One of my favorite yoga teachers is the one who works with people with back issues-
We are all way too hard on ourselves. Uncertainty is crippling us,too. Try to do things you love - I only notice the cleanliness of my own house- find your “happy place” and let yourself go there. It’s a process to let yourself though.
0 -
Finally. MO just called with Pet/CT results. (5 PM here) Tiny progression again. Not enough to change tx. I called them at 8 AM this morning after agonizing about it all week. Should I call or wait for May 28 appt. with MO. Glad I called. Phew.
0 -
Jaycee, glad to hear the progression is minimal and you didn't have to wait any longer. Here's praying the meds knock it all back again. I know I will hear on Monday from my scan yesterday as I have an appt with my MO on Monday. Waiting is so hard!
0 -
Nkb- It seems I complain about living in a rural area a lot on this site. Here I go again. Our YMCA does not offer a range of Yoga classes. I guess I could get a DVD of Yoga for back issues and do the exercises in my own home. Maybe.....
Jaycee- Woohoo for your results, though wish NO progression.
IntoLight- Hopefully the weekend will go quick for you. Keep us informed.
0 -
candy and into- I heard about a book today on a podcast. Look it up on amazon and scroll down to read the description. I think you will like it. It is called the importance of living by lin Yutang. It was written in the 1930s, but apropos for these days
0 -
Candy, sorry to hear of your pain. I was on letrozole for a few years , when it failed I changed to Faslodex. What a difference, no stiffness or 'seizing up'. I had not realised how much it was affecting my mobility as it was a slow, insidious process. I am not suggesting this would solve your problem but it is worth discussing a change of medication with your oncologist.
I have lurked on this site for the last 14 months and I love that I have a 'palbo' family who are always there and understand, thank you all.
0 -
Jaycee, I'm sorry to hear there's progression, but glad that you get to stay on the same treatment for a bit longer. I'm a fan of getting as much time out of each treatment as you can, it must be tough mentally to stay on the ship when it looks like it's starting to take on water. I admire your calmness and ability to look at the bright side, and hope you stay with us on Ibrance a whole lot longer.
0 -
Thanks, Chris. Holding my breath with you until Monday. Just figuratively, of course.
Thanks, Candy and Piggy. Yes, no progression would be better. MO focused on SUV values for the last few months when one nodule went up 0.5. Yesterday on the phone (much harder to understand on the phone, why is that?), she focused on size of the one largest nodule going up 1 mm. I feel ok waiting until next appointment to discuss it further. I have to remind myself that I go four months between scans. If progression continues at this pace, I may be ok for a while longer.
0 -
Sounds reasonable Jaycee. Are they going to scan more often, just to keep a closer eye? Of course that just means more scanxiety too. It’s a balance! I have a CT scan coming next Friday with results the following week. Almost 6 months since my last one....
Hope everyone waiting on results is coping
0 -
Karen, she actually wants to do one every three months and I talk her into four. I'd go longer if I could. As long as I feel ok, I'd rather not deal with changing treatments. Just my approach. Not for everyone.
0 -
Hi all, checking in. I've updated a couple of other threads, so forgive me if I'm repeating myself. I did get scan results but my MO was out of town, so we'll meet and review next week. Liver met is significantly smaller, bone mets are mostly stable with a couple of progression points. Most importantly, I feel good and am tolerating some food orally, which means the esophageal met has to have resolved, at least some. It still isn't appearing on the scans. So, guardedly good news.
Jaycee, I like your approach. If you're feeling good, milk this treatment as long as you can.
Denny, welcome! Yes, you have the best kind of family here, one that can talk openly about bodily functions, and limitations and challenges that come with this insidious disease.
0 -
See! Told you she was doing better. I stalk certain former members of our thread including Jaylea, Joyner, and Grannax2. Well, not stalk really. Just keep up with and maybe stalk a little.
Jaylea, that's such great news. Let us know what MO has to say.
0 -
Lucia,
CDK12 mutations make breast, ovarian, and prostate cancers become sensitive to immunotherapy, because they greatly increase the T-cell infiltration.
Take a look at the pictures in the link below: the brown spots show how many T cells are infiltrating the tumors, and you can see much higher levels in the CDK12 mutant cancer (top photo on left and in the middle) than in prostate cancers with normal CDK12 (bottom photos ). The levels of T cells infiltrating are also higher in the CDK12 mutant cells than in cancers that express mutant mismatch DNA repair factors (top right photo), which until now has been one of the best indicators that a cancer will respond to immunotherapy. https://cdmrp.army.mil/pcrp/research_highlights/18...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC60844...
They found four heavily-treated prostate cancer patients who had tried immunotherapy, two were quite ill and did not live long enough to get more than 1-2 treatments, but the other two were exceptional responders.
So, the hope is that the chemical CDK12 inhibitors that are slowly making their way to the clinic will make our cancers highly sensitive to immunotherapy.
0 -
Anyone here take effexor? My doctor prescribed it for my hot flashes (about 15-20/day), but I read that it can help with muscle and joint pain and certainly won't hurt my mood. I am about a week into it and hot flashes have cut in half. I am hoping it will help my aches and pains as well! Was wondering if anyone had any experience that they wish to share?
0
