My Husband, My Life, My Love, My Family, My Cancer
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I had an appointment with my oncologist today. We are going to do a liver biopsy to see if my HER status has changed (it has been eight years since we last checked.) She said there is a tumor near the surface that should work well. If it has changed, she said there were more oral options available for me. If it has not changed then I would need to go on IV chemo as I am already on my fifth line of treatment. At that time I will weigh the benefits to see if that is what I want. She also said that it would do no good to increase my current med (Verzenio) as progression means it has run its course and would not work at any strength. Good to know.
Thanks for caring. I will let you know how things work out.
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Candy, thank you for the update on Mel and you. How was your jury duty experience? I hope that your cataract surgery goes smoothly.
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Intolight, Pfizers new cdk4i (atirmociclib) is 4x stronger than Verzenio ( and 20x stronger than Ibrance) does work on cancers that have become resistant to standard CDK4,6i. The drug is wrapping up phase 3 right now (no longer recruiting), so if you do go on Enhertu, it might be available by the time you are done…
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@cure-ious thank you for this information. I will put it in my notes for my oncologist. We are not making any decisions util we get the results from my biopsy.
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@goldensrbest hugs to you, sorry to hear about your dog. Your pictures show a furry face that knew she was loved.
So I have progression in the liver and skyrocketing markers, ctDNA. I have been switched to Enhertu but then after getting home from port placement yesterday get four of the exact same letter in one envelope saying my treatment is "not medically necessary" and insurance won't cover it. My doctor has probably already appealed but seriously? So exasperating. I think maybe all mail will go in the fireplace. What letter? Nope didn't see that...
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Cure-ious- I heard about that new drug while watching a webinar (from Komen). I looked it up online and it said the qualifications for being on the trial was to be naive of treatment- not been on a CDK 4/6 before, or even a hormonal, I think. If it is approved by the FDA in the future, do you think it would be a choice for us that have had multiple treatments in the past? Or would it be a new drug for newly diagnosed folks only?
Chicagoan- I got thru the jury duty. 3-day trial. Murder case. It was an experience, to be sure. But don't know if I would want to do that again. Mentally hard.
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Candy-I didn't know you were on a murder case! That does sound very hard but I imagine you were a very good jury member. Thanks for doing your civic duty.
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Hi Candy,
There are multiple trials for Atirmoclib, and they are now making trial combinations with Pi3KCA and other ETs, its hard to keep up. From San Antonio, this abstract refers to the earlier trial, and I will look around for more specific info on endocrine-resistant cancers.
P5-07-28 Next-generation CDK4-selective inhibitor atirmociclib in combination with letrozole as first-line treatment in patients with HR+/HER2− metastatic breast cancer
A novel CDK4-selective inhibitor being tested in combination with the hormone therapy letrozole as first-line treatment in HR-positive/HER2-negative metastatic breast cancer showed favorable safety and tolerability and signs of activity against the disease after a median of 11.1 months follow-up in an ongoing phase 1/2a trial. This novel agent, called atirmociclib (PF-07220060), specifically blocks CDK4 and not CDK6. A previous analysis of a different cohort in this trial showed tolerability and clinical activity in metastatic breast cancer patients who had progressed after two or more lines of previous therapy, including CDK4/6 inhibitors and endocrine therapy.In this trial, 34 patients were assigned to atirmociclib in combination with letrozole. These patients had not received anti-cancer medicine for metastatic disease and were CDK4/6 inhibitor naive, though 55% had undergone surgery to remove the cancer and 47.1% had prior therapy. Of 32 patients with measurable disease at the start of the trial, half showed a response to the treatment. No severe adverse events occurred, though one patient discontinued the CDK4-inhibitor and three had dose reductions.
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MKestrel- Also, you might try adding in Verzenio if you can get that prescribed- I am trying that now, I had some leftover Verzenio from when I was taking it with fulvestrant, now seeing if I can get a new response with Orserdu. Just because something stopped working with fulvestrant does not mean it won't work in combination with the stronger oral SERDs
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mkestrel - so sorry about progression and then on top of that your asshat insurance co denying coverage🤬🤬🤬.
Candy - did you try to opt out of jury duty? I would think being stage 4 would be an automatic excuse. BTW - 30+ years ago I was on a tri-county grand jury in the Traverse City, MI area. We met almost weekly for almost 6 months and had to travel to these out of the way meeting places on a rotating basis. There were a lot of major drug cases and one murder case where we were able to help locate the body by compelling witness testimony. And of course we couldn’t discuss anything till our term of service was over. Crazy experience.
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Hello ladies,
It’s always great to hear from Mel. I wish her and her family strength and better days ahead.
As Sondra mentioned, I’ve had a lot of private, sad moments too, feeling like I can’t seem to win against this beast of a disease, which has kept me laying low recently. I pushed my MO for a PET scan, and I’m glad I did. The results show a new sizable tumor on the left lobe of my liver where I had Y90 on 3 tumors, and the 3 previously stable tumors on the right side have grown about 9mm each, which is very concerning. there’s also a new tumor in my C vertebra, along with several new lymph nodes around my breast where I had high-dose palliative radiation. all tumors have very high uptake, including the breast tumor that was radiated, which raises a lot of questions. plus, all the TMs are through the roof, very disappointing. I immediately started Xeloda (oral chemo) with a lot of tears, I had been avoiding it for months, hoping to get into a trial.
Intolight, I’m so sorry about your results, I’m with you. Let me briefly share my experience, it might help you figure some things out. since you're about tissue biopsy, which is the first and most important step, make sure the IR takes more tissue than the standard guidelines dictate! speaking from experience, I had to undergo a second liver biopsy in less than 10 months. since the tumor is near your liver surface, which is considered good news, you may be a qualified candidate for a new local therapy called histotripsy. It’s an easy and quick outpatient procedure that takes about 30-45 minutes with no post-op restrictions, but it does require general sedation. It might be worth looking into as an option.
Hopefully, CDK4 will be approved soon, and we can get a good run with it.
Cure-ious, thank you so much for the update on CDK4. this med, along with the new PROTAC hormonal therapy, is actually the trial I was hoping for. But it doesn’t seem like it will be opening near me anytime soon. The one that has opened at Stanford has restrictions on Elacestrant, which doesn’t surprise me, but I don’t understand why they don’t open arms to more patients, especially considering how many of us were forced to take Elacestrant. the interesting part is that the trial allows Fulvestrant but not Elacestrant!
In response to Candy’s question, I read somewhere on the MDA website that in the CDK4 monotherapy trial (Phase 1 and 1b), any prior use of CDKs of any kind qualified. This gives me hope that once it’s FDA-approved, the restrictions posed by Phase 3 trials will be lifted, right, Cure?
Dr. Yap at MDA has shared findings on this, here’s a link to his presentation:
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@snow-drop Thank you for your post. I listened to it intently and am hoping to bring it up when I discuss next steps with my oncologist. I had a CT today to verify the MRI I had done on Tuesday and the report reads a lot better than expected. There are multiple subtle metastatic liver lesions with one that is listed as representative and provides a measurement. But it also says there are no obvious metastatic lesions in my spine which was a major worry. All that saying there are mets in my liver but everything else looks pretty good. I am anxious to see how my oncologist interprets it all since she jumped so quickly on this as progression. Obviously we need to take care of the liver, but I am less stressed than yesterday when I left her office. Of course this is my interpretation of the report and I haven't talked with her yet. I'll let you all know…
@candy-678 My oncologist wrote an excuse note from jury duty. I thought this was standard practice. Good for you for going. Thank you for doing your part.
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Well, another late night mostly due to sleeping a couple of hours on the couch and then heading to bed, slept well though.
I will be spreading some salt around as it did freezing rain, not wanting to fall again so plan is to cover step in salt, let it melt and sweep off once it is melted. I will see.
Probably going out tonight with DB, they skipped due to ice yesterday so will check the front walk and salt as needed. Laundry will happen, perhaps another blanket, big ones happening over the weekend, only two so not such a bother. Got Paratransit booked for Monday as soon as I got up, have an MRI in the afternoon. When it comes time, have to remember to request the results come with an in person appointment as DB and SIL have questions and want to come along. I am fine with that, not sure what they want to ask but I will hear on 20th when I get results of the MRI.
Not sure about eating today. Edited, I actually wound up taking two eggs and putting in the microwave and for dinner had a couple of meat pies. Both were good.
I keepforgetting but I hope everyone had a good day and in pockets for all who need me.
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Good midnight to all. It's still early for me to go to sleep. But when I do, well I don't rise till almost noon. Fortunately most of the staff at doctor offices knows this (without judgement) and book me for afternoon.
@snow-drop @intolight @mkestrel and all that are facing progression and change of meds, I'm in your pockets for all your needs. I think sometimes scans show inflammation and it is misidentified. Hoping that new meds will solve progression. It's amazing how many new breast cancer drugs are in trial. Thank you cureious for keeping us updated.
Nov. 24, 2024 I turned in my application to MO's office (who faxed to 3rd party office to complete Dr. portion of application). Pfizer patient assistance is almost impossible to satisfy and the 3rd party folks are overwhelmed, short handed and boy somebody is lying. I won't go into it, but suffice to say I still do not have an approval or disapproval. I did have a major meltdown today talking to supervisors. Silence on their end as I tried to steady this rickety boat. @mkestrel I can't agree with you more about insurance. It's like we have to beg to receive proper care. I'm so weary of all of this. The side effects, the insurance, the constant appointments and mental health all stink. Maybe tomorrow will be a better day.
Hi @mara51506 Thank you for your support keeping this thread going. Be careful catching that transit. I believe I heard there will be 3 storms back to back to back. Some areas will be hit with snow, some with heavy ice.
Thinking of Mel and all that need support. Posting can be mentally challenging, it certainly is for me. If only we could pull back the curtain on brain fog and make this journey a little less challenging.
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In response to Goldens and Intolight- I had to fill out a questionnaire about being on jury duty. Would it be a hinderance with work, childcare, elder care, health, etc. And it said I would need a doctor's note if health was an issue. I know my MO would be ok with sending me a note, but I did not really want to do that. I am not going into the office frequently for treatment (not due for injections until mid-March and taking Lynparza in pill form) and I did not have any appointments coming up in the near future that I could not change. If those would have been the case, then I would have done the doctor excuse thing. I did ask if I could wear a mask during the proceedings and was not told no, so I wore a mask to protect myself. It turned out to be a 3-day trial, 8:30am- 4pm with an hour break for lunch. Not too taxing. I guess it also could have turned out much longer, but it didn't thank goodness. And it was a neat life experience. It was interesting how it all worked. Just mentally hard. Lost some sleep thinking about the victim and the families.
Cure-ious- You do so much research on all this. It is confusing to me. I was excited about this new CDK 4 drug at first, but then upon reading about it, I thought it may be used as first line therapy only. Good news for the newly diagnosed, but no help for us. Maybe they will expand it to those that have had other therapies too.
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Snowdrop- I watched the video you posted. It does sound promising!!! Sounds like it is being trialed for people who have had multiple lines of therapy in the past. I do want the scientists to find new therapies for newly diagnosed folks, but I also want there to be more choices for all of us going forward. I will have to watch for more info on this CDK 4 selective new drug.
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Candy- they reported out early results with the new CDK4i in 2023, for sure it will be used for endocrine-resistant cancers. Question now is how fast will they get this to the FDA for approval. ARV471 PROTAC and oral SERDs Imlunestrant and Camizestrant are also done early with phase 3 testing. New CDK4i SEs are the same-old, diarrhea, neutropenia, etc. I guess the CDK2 and CDK2/4/6i are more problematic in terms of side effects so they are taking longer
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Irish - I really agree with you about the inflammation and scans thing. I have noticed that once in awhile an area under my right arm, down to my breast, and then down that same arm a ways will light up on a scan and my first oncologist got pretty freaky about it and said it was cancer spread. I said that my gut and instinct just wasn't so sure. She said we have to assume it is cancer until proven otherwise. Then I would have scans where that same lighting up never occurred. Eventually I directly associated it with times when I spend a hours on end on the computer and reach for and use the mouse a lot - to the point where that whole underarm area of mine feels sore - I'm sure it's sore muscle and not any cancer spread. Thank goodness my new oncologist sees stuff like that and just makes a mental note about it as something to monitor over time. There are more things that I've experienced on scans that light up and I think it is inflammation, but that is the main one that I've dealt with. I wonder sometimes if people don't wind up getting unnecessary biopsies, in addition to all the worry and stress, just because something other than cancer progression has lit things up. It seems the interpretation can vary from dr to dr too, and that's both interesting and important. There's still such a long way to go with all of this treatment business.
I am so very sorry too about your ongoing troubles with Pfizer. No one in our situation should have to go through what you are, just to get the necessary drug! The point person (patient assistance) for all of this drug company stuff at my clinic told me that it has been getting a lot harder this last year for patients to deal with and get what they need from these pharmaceutical places. It is so wrong. i continue to wish you the best of luck with this.
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threetree and irish, I agree with you both on the inflammation issue and know sometimes my liver trouble is inflammation. I think that is part of the reason my oncologist measures it against things like tumor markers. Since this time my markers have steadily climbed (not up and down at all) she believes it is progression. You are correct that we need to look at the whole picture and not just one snapshot in time. When I try to explain these things to people I call "outsiders" it is no wonder they don't understand and just stare out into space. I never try to explain to people who really don't want to know nor care.
@mara51506 Stay safe out there. My DH came to my appointment on Thursday for the first time in a long time. I wanted him there to be a second ear to what the oncologist had to say as sometimes I don't remember it all the same way. He cares but also understands I am capable of handling it all myself, but you are doing well. Just keep doing what you are doing. You are a special friend to all of us here and you have our love and support as much as we can give.
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Well, not much sleep, got hungry after getting back from Walmart and drive with DB and snacked on chocolate and some cheez it snacks, cheddar and sour cream flavour, they were delicious but then I did not get to bed until 3 am, woke up about 10 mins ago. Oh well.
I did do well last night, did not have to salt too much as the sidewalk plow came along, did wear cleats though as it looked slippery in places. Got more stuff for groceries at Walmart but that is OK. Snacks and meatpies along with sour cream among the haul. Also got to take 15.00 off the order thanks to past orders and earned rewards for shopping which is good. The more the better.
Not sure what is on tap today, Laundry of course, clean the cat area, might sweep and do a quick mop of the floor. Thinking of an egg sandwich this morning but make the egg on the mini griddle instead of microwave this time, unsure why but that is what I feel like. Later was going through my pantry.
Edit, I had Knorr rice with cheese and spinach, had to use sour cream instead of milk, it was really good and very rich. Tonight eating some swedish meatballs, frozen ones and toasting a garlic english muffin to have with, will split the meal up in a couple of servings. Probably have more chocolate after, I have a few oh henry bars which have peanuts, chocolate and a nice nougaty taste.
After dinner, finally attacking chores.
I hope everyone's day has been good, always in pockets as well.
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Intolight - Your liver situation is interesting to me, because there are some similarities with mine. As above though, it's just hard to know what's going on (inflammation showing up that isn't really progression?). I know you've had some stable liver lesions and so have I. Now they think mine might be growing, i.e. progression, but the evidence isn't real clear. They go back and forth with the measurements of the lesions on my liver; sometimes they say they think they've grown a little bit, and then other times they say no, they're the same size they have been for a good couple of years now. My tumor markers also have been going up steadily for the last six months, but super, super slowly and they are still in the "normal" range. The increase is definitely steady though. My onc can't really tell at this point, but thinks there might be progression, so he is focusing on my liver a lot more. He hasn't actually seen enough to be absolutely certain that it is progression. I recently read too, that like things that light up on scans, e.g. inflammation, some kinds of inflammation, especially in the digestive tract, can also cause tumor markers to go up - things like pancreatitis, etc. Well, interestingly, the last time they did my tumor markers was right as I was finishing up with some sort of stomach bug or food poisoning, so I can't help but wonder if that last increase at least, wasn't possibly due to inflammation in my digestive tract. I can't remember specifics about the other times, but I do often have digestive issues. We really do need to watch and wait sometimes; monitor, but not jump to quick conclusions. I'm just so glad that my oncologist is one who likes to really monitor and feels that rising tumor markers must be backed up with scans and further evidence before drawing any conclusions. He's very careful and cautious, and I really appreciate that about him. I have my next routine scans in March and the onc did say that he will be focusing especially on the liver situation. I also know what you mean about how "outsiders" just have no idea (and often no interest) in hearing about or trying to understand a lot of this. I don't know if I would either if it was the other way around and I was the "outsider".
I did all my original diagnosis, surgery, and chemo treatment all by myself (I live alone), but then once when I was in the ER, one of the social workers told me to always take someone with me to appointments, for the moral support of course, but also to be that other pair of eyes and ears. I then asked an old childhood friend who lives in the same general part of town that I do, if she would come. She does the driving now and accompanies me to the appointments, and I have to say it has been a huge help, even though I am totally capable of doing this on my own (She actually has always driven me when I was required to have an escort, but that was all). It's just so nice to have that person who knows you well there, just to talk with and lower the stress level if nothing else. I understand the thing about to take someone or not, especially when we do have the ability to manage on our own. I think with a spouse it could be a little "trickier" situation. I used to be married and sometimes I wonder what it would be like if my once upon a time husband was going through this with me. I'm wishing you continuing good luck with this liver issue of yours, and I appreciate you sharing the details with all of us.
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Yes, Pfizer is handling both ARV-471 PROTAC and the new CDK4i, and unlike the oral SERDs, the PROTAC drug works as well on wild-type ER as on the ESR1 mutation… And both of them have stopped recruiting for the phase 3, so just on a watch now to see when they move them out of the pipeline…
Were there actionable mutations like Pi3KCA in your liver biopsy?
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Threetree, I am similar in that my head always has enhancement lighting up but RO reads it as unknown if cancer. It does not seem to indicate more mets. This blood pool in my head is weird too. Does not change and no idea what caused it. I get regular MRI every 3 months and CT scans once a year. That is as far as it goes. My DB and SIL want to come to my next app't with RO as they seem to think I am in bad shape. I will allow it but listen carefully to their questions and correct as needed. I do not feel my need to coordinate myself to get up and down the stairs or out of a vehicle is a bad thing. Don't think my cane while walking is bad either. Oh well, like you, will have to wait and see what happens and disregard opinions about me except for the RO and myself.
The Walmart swedish meatballs were so good and inexpensive, gave me two meals worth. Put some salt and sour cream and onion seasoning and had an english muffin to act as garlic bread. Yum.
I appreciate the warning about the weather. I can check the front from inside the building, nothing much happening yet. Still got cleats on my boots and the spike so feel pretty confident when going out although I don't typically go out other than appointments. That can change once the snow goes away.
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Hello folks. Hate to brag but it was a perfect 78 degrees here today. I did minor gardening, fresh water in bowls and birdbath and watered plants. No rain expected for more than 7 days. After about 15 minutes I was exhausted and in pain, so parked my behind on my favorite window chair. In order to feel useful, I did manage to vaccuum and do dishes later in the day. I'm so disappointed that I've waited so long for approval for cortisone shots (set for Tues) and I will have to reschedule. Blazing UTI, second one in a month. The RN neighbor explained that the cortisone would cause any infection to become much worse. Learned something new today.
Still no word on Ibrance and Pfizer patient assistance plan. Maybe I'll hear Monday. Tomorrow will be a do not disturb on my bedroom door as I watch my beloved Eagles play K.C. Chiefs in SuperBowl 59. I'm the only football enthusiast in this house. Snacks will be Tastkakes, made in Philly.
Stay warm, stay safe and know you all are loved by those that do understand.
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Irish, enjoy the superbowl. I do not watch but remember when DB used to make food and we would go over and eat which was great. Nowadays, he goes to SIL brother's house for watching, they all bring snacks as well. I got Apple + TV, my one grocery card offered a 7 day trial which transitions to a 3 month trial. Looks like there are some good shows to try out on there. My youtube has turned into political stuff, need to start watching more food channels or video game channels that I follow and delete watch and search history to rid the screen of the political stuff.
Since I do not watch the game, I can still find a movie to stream or another show. Still watching Invincible, Mayfair Witches, Elsbeth and anything else that comes to mind. Got a few free streaming channels that give a ton of stuff to watch as well. Not sure what I will be watching yet.
I have a ton of food options, said yesterday I enjoyed Walmart's swedish meatballs because they remind me of stroganoff, I may eat it up first or boost with some rice and eggs, not sure yet. Still work through the eggs as well, can easily see microwaving an egg then chopping up the egg with some beans and cheese and heating up in the pan with some melted butter sounds good to me. The Knorr cheese and broccoli rice was so good too, would make a good side dish to go with something else. So many options.
Other than that, not much to add to the discussion other than laundry being done with some sweeping and eating happening, little budget boosting and that is about it. I do hope everyone has a good day, anyone watching football, hope you team wins as well, enjoy the ads and the half time show. In pockets for anyone who needs me as well, will likely edit if I eat something supergood.
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Irish - Sorry that you only had 15 minutes out there in your balmy 78 degrees, but I'm so glad that you had it! It sounds wonderful - filling up all those water bowls and enjoying that great outdoors. Even 15 minutes of fresh outdoor air can do wonders for the soul. I sure hope you get your other stuff, e.g. Pfizer figured out. As we've been discussing here on this thread recently, it's just not right to make stage 4 cancer patients jump through so many hoops just to get the treatment they need. Another UTI?! Not fair! I'm thinking of you, in your pocket, and sending a hug.
Re the Superbowl, I'm not particularly a sports fan and don't really follow any of it, but sometimes I do put on the Superbowl, just to have it on "as background", since I'm alone here, and to at least be aware of what's going on, so when others talk about it, I have some idea of what happened. The problem is that this year, I've read that it's unfortunately gotten rather politicized and I think that's a real shame. Things like sporting events used to be "politics free" and just a nice time for people to kick back and enjoy something, and each other, just for fun and relaxation. I'm not sure if I want to turn it on this year or not if it has become a political thing now. I really don't like the idea of everything in life becoming political. I actually like politics on a certain level and way back in my late teens and early 20's was politically active, and even considered a possible career in politics, but there were things in life that were just devoid of politics thank goodness, just so people could be people and enjoy some down time, and each other, without that ugly sort of interference. Things seem to have changed unfortunately, so I'm in doubt about the game this year. I just want to get away from all that stuff sometimes.
Mara - you had mentioned Knorr rice, and boy did that bring back memories of childhood for me. My mother used to get Knorr soup in these packets that came in a box; some sort of vegetable and/or noodle or something. I remember it well, because my brother and I like it and it had a Viking logo on the box and my brother had some sort of "Viking thing" going on for quite awhile when we were kids. Talk about a blast from the past - Knorr food products.
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@mkestrel that letter saying your treatment isn't necessary...argh. I'm so sorry you have to deal with that while you're trying to treat progression. Hoping your doctor can intervene, which is of course ironic in that our doctors ought to be the final say in our treatment decisions, not an insurance company!
@snow-drop thank you for sharing that video. Thinking of you as you adjust to your new treatment, wish you had been able to get into the trial you wanted, but also hoping xeloda will work well for you.
@irishlove argh, the patient assistance doesn't seem to be actually assisting! Perhaps it ought to be renamed patient obstruction and obfuscation...
@intolight hoping your biopsy goes smoothly and it results in good info for you and your doctor to make treatment decisions with.
My sweetie and I used to watch the superbowl together, I'd make a huge bunch of nachos loaded with cheese, jalapeños, beans, guacamole, salsa and hot sauce... with ice-cold cokes in bottles to wash it down. Most of that I can't eat anymore (tummy doesn't like anything spicy at this point). I've never really cared for football, but it was a fun afternoon when we were together. Haven't watched a game since he passed, and now am just glad the 49ers aren't playing because then my neighbors would be setting off fireworks all night! Hope it's a close game for those of you watching, always makes it more interesting.
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@sf-cakes what a sweet memory I could almost feel myself drinking the cold coke as I read… and now I feel like eating nachos !
Spending a quiet Sunday , cooking ahead of time for a busy work week.. crispy cauliflower and sweet potatoe curry . Will watch the game with DH , looking forward to it.
Mara - on Apple TV I like Ted Lasso and Shrinking.Managing cancer care is such a full time job on its own, and then the insurance companies, other appointments and for some the snow and ice… the sun actually just came out as I’m typing , so close to sunset. I’ll take it with a smile.
I’m wishing everyone healing and a week of ease with appointments , phone calls or forms. ❤️7 -
Curious, ESR1 Y537N in ctDNA after taking Elacestrant dropped to less than 1%, but in the tissue biomarker test, it was detected at 45%. PIK3CA was not detected, but some other mutations, such as GATA3, MEN1, and NF1, are quite high, and TMB is low.
I’m really looking forward to the PROTAC and the CDK4. unfortunately, CDK4 is not on the FDA fast track, so approval may take years...
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