Bone Mets Thread
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Thanks as always Leapfrog, you are amazing support.
Grace DD, I'm new when it comes to terminology, what does TM (followed by numbers) mean?
General question: is there any already approved inmunotherapy for stage IV breast cancer ? No such thing as trials (or cancer research) where I live and no money or stability in general to move away. But I would consider it if everything fails and I want to buy myself more time (I'm barely starting my first line of treatment). I'd do it mostly for my son: he became very mentally ill and work-disabled/socially withdrawn after my first diagnosis. We only have each other since his father also had cancer and passed when he was a teen.
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PHOTOGIRL Going to Africa must be awesome, hope you take a lot of pictues.
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ceci -
In general, in the US, we believe that breast cancer is not immunogenic in the sense that the tumors are very effective at keeping the immune system out. When you biopsy an MBC tumor, you generally find that the immune system is not very active in the tumors. The assumption here is that MBC is not a good target for immunotherapy. IMO that is a mis-understanding that falls from conflating many wildly different treatments under one term .. immunotherapy.
The term immunotherapy covers a range of treatments from vaccines, to radiation, to PDL-1 inhibition to various procedures to manipulate the immune system by extracting, activating and re-infusing cells. The last category in fact contains multiple completely different therapies. It is true that CAR-T therapy has not been shown to be effective on any solid tumors and MBC has not responded well to single agent immunotherapy treatments. Beyond that there is a lot of territory to explore.
Keytruda has been approved for TNBC; however, this approved drug could be used off label for other types of cancer if the doctor orders it. PDL-1 inhibition works best with a high Tumor Mutation Burden ... something you can find out from a genetic test. If you do have that high TMB, it may be worth trying.
Stereotactic Body Radiation Treatment (SBRT) is one of a class of radiation treatments that try to stimulate the immune system rather than kill the cancer directly. It kills cancer in a way that releases neo-antigens and makes the cancer visible to the immune system. This is an approved treatment in the US covered by insurance.
In general, single agent immunotherapy treatments are a low odds bet with MBC, but SBRT (a powerful tool in immunotherapy) in combination with PDL-1 inhibition may be the most effective combination of FDA approved "immunotherapy" treatments available in the US.
As an aside, high TMB doesn't necessarily improve the odds of other types of immunotherapy. I used to think it was a good idea to wait to do "immunotherapy" until the cancer had mutated significantly ... but that was a mis-understanding arising from the fact that in the US we conflate often PDL-1 inhibition with immunotherapy when we speak about this class of treatments.
Beyond approved treatments there are interesting immunotherapy trials going on. Consider contacting the Cancer Research Institute. They have an immunotherapy trial matching service. You can also contact the NIH in Maryland and begin the process of getting vetted for their immunotherapy trials. Their Tumor Infiltrating Lymphocyte Trial is getting a lot of press but it's a very tough trial. The key thing to understand about the NIH immunotherapy group is that they have a lot of trials. The TIL trial is far from the only one to consider. In fact you don't apply for a specific trial anyway. They vet you for all their trials and suggest the best match. After the first visit to Maryland, I believe they pay for travel.
If you are interested in immunotherapy don't wait until you are progressing to start figuring out what you want to do and how you are going to do it. It is complicated to arrange. You need your plan lined up in advance. In many cases, there is no reason to wait for progression.
It sounds like you intend to fight because you are worried about your son. We all get that. Being proactive will improve your options whether it is immunotherapy or whatever.
>Z<
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Ceci, I highly encourage you to go to this thread and go through the process of requesting the MBC guide Bestbird has put together. It's an incredibly helpful and informative. https://community.breastcancer.org/forum/8/topics/831507?page=3#post_5050902
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I met with the trial Onc yesterday and found out I am not qualified for the new immuno drug with Abemaciclib because of my past medical history. The Onc told me that immunotherapy for breast cancer has not provided any substantial results yet. Since I still have many options on my treatment I may or may not want to participate another phase I immuno trial that I may qualify (regardless of my medical history). After reading the material for the other possible trial, I found out it is for two new drugs in immuno field, but basically it is getting data from the patients for SEs, dosge, etc. I decline the trial.
I will enjoy the rest drug free holiday, and go back to my regular Onc to discuss the next treatment plan. I will ask my Onc on Abemaciclib as a possible next treatment.
Has anybody taken abemaciclib (Verzenio) in trial?
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Is abemaciclib essentially the same as Ibrance?
Is it something you would take if Ibrance failed you?
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Hi Kaption,
Abemaciclib is also a CDK 4/6 inhibitor but it is more focused on CDK 4 (I believe) and therefore has a slightly different action. Unlike Ibrance, it looks like Abemaciclib works on its own whereas Ibrance must be given in conjunction with an anti-hormone treatment. Abemaciclib also does not have the same immunosuppressive effects as Ibrance. I'm not sure if it's clear whether it is effective to go to Abemaciclib after Ibrance - the jury may still be out on that - but is looks like some oncologists are prescribing it.
I'm sure there are others on this board who are much more knowledgeable than I am and who will weigh in. I'm very interested in Abemaciclib as Ibrance really impacted my red blood cells leading to anemia. I didn't fail but we stopped using it as a result. I've just switched to Xeloda as it appears there has been significant progression in my bones, mostly in my spine over the last few months but I'm hoping to keep the Abemaciclib option open for down the road when it is available in Canada.
Pat
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Ah, Ceci, that makes more sense-we were wondering who was recommending a trial of Abemaciclib and Immunotherapy for an ER-positive cancer, although that is a combination I would like to take! And add Faslodex. Would like that combo after progression on Ibrance-Femara.
But the trial is probably aimed at TNBC or other types of cancers, because TNBC is the only subtype responding well at the moment to checkpoint inhibitors-type immunotherapy. However, two papers published this past year in Nature are saying that the Ibrance-type drugs (and Abemaciclb is Ibrance-like, and supposed to be even stronger and works slightly differently) work great when combined with immunotherapy. So, the question arises, how long before there is a clinical trial testing immunotherapy drugs on ER-positive breast cancers! Some combination of therapy that gives us a shot at the wonders immunotherapy offers, it is taking forever.
Perhaps we will hear something from the annual San Antonio meeting coming up- abstracts should start rolling out in a week or two!
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Sadieservant has abemaciclib figured out. More focused on the CDK 4 pathway, which may be the more important one. It's different enough that I will consider taking it although Ibrance/letrozol "failed". In truth the combination knocked out all the original mets down to the last impacted lymph node and entire constellation of primary tumors. However, something evolved around it and now I have a few mets in my liver. I could continue the Ibrance with faslodex; however, I just finished a round of immunotherapy and Ibrance is to be avoided at least for a while due to the immune suppression.
>Z<
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Hi Z,
I recently posted my CAT and Bone Scan this month came back positive. No growth and some tumors no longer visible. I pray for all of you daily and wish you all the best you deserve it.
Ronnie
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Ronnie that's terrific. Thanks for sharing.
Sadiesservant-Curi-ious -Zar I am trying so hard to understand your speak. Dani is now on Neratinib/Faslodex but doc has Keytruda lined up for her, and there is talk of Abemaciclib - no trial, just straight up, if and when we need it, i hope to convince him to give it together as you Curi-ious have been mentioning. She is triple positive - Her2++ equivocal, i was reading something in a report that last year when she had a iliac biopsy, first it was her2++ then on FiSH it was +++, so this supposedly factory (that's what i will call it), in NYC is writing in the report that she is weak HER2+++ we were not told that. Isn't it weird. Anyway, so Cling maybe you should know that this is being given in the USA not only on trial, it has been very recently approved.
Zar i'm gonna study closely what you posted. good stuff. i wish i could remember it all when we are sitting at onco's office.
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Mom: I know Abemaciclib (Verzenio) has been approved by FDA since September 28, 2017. I was sent to talk with a trial Onc on a new immunotherapy drug combined with abemaciclib, not about using abemaciclib. Cure-ious, Z and Sadiesservant really know a lot about the research trend and I learned so much from them.
I hope Dani's new treatment plan will turn things around for better.
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Oh, yes, I'd be very interested to hear then what the combination is. We'll be waiting. Oh let's really hope, thanks so much. And for you too!
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Ronnie. That's great news.
So many of you ladies amaze me with your wealth of knowledge. We're lucky to have you as "our source"
Thank you
Bab
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Hi Momatt- Following Dani's every move! The clinical trial cling was talking about does combine Abemaciclib with Keytruda, so that is a combination of great interest right now, and the trial is for solid tumors of any kind, so long as the tumor have a high microsattelite instability (MSI) score, which is a measure of how many mutations the cells are (the more screwed up the cell, the better it responds to immunotherapy). But some cancers respond even without that, so I hope they can just give it a try! Good luck, we will be waiting on your updates...
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Went for sumularion last night. Will be doing 10 rounds of rads to spine. Just found out that while doing rads I must go off my trial but can go back on right after. Not sure when I'll be starting. They want more info about my original rads first. I do hope this is much easier on me.
Babs
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Babs I hope you breeze through those rads , haven't done any yet myself but I'm sure it will be in my future. Nice that you can hop back onto the trial afterwards.
Momallthetime you and Dani are always in my thoughts, make sure to take care of yourself as well☺️
Anyone here anything from Dee lately? Been a while am hoping she is NED and living the life.
I have been searching for the Letrozole feed and can't find it anywhere. Anyone have the link?
Been having some stomach issues been bad loosing weight full feeling all the time was told don't worry it's the meds I'm only on letrozole so bad right now I want to stop taking it. Anyone else experience bloating and nausea
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Wendy:
Can you try googling Letrozole directly? Sometimes they will list all the SEs on their site. AI's raise heck with everything, so I hear. You could also try calling "a better" onc nurse/PA. There are good ones and bad ones out there. Sometimes you have to get more than one opinion. If it's bad enough that you're losing weight, there's something going on. Don't take no for an answer.
For now, maybe try taking it every other day? See how that goes.
Wish I could be of more help
(.L
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Wendy,I have been in contact with Dee. I did text her and ask if I could share and she said yes. She is doing well and stable right now. She said to say hi to all here.
Letrozole tends to create more bone and joint pain, but these drugs cause different SE's for everyone. Not sure about the nausea.....could you have picked up a virus? Hope you feel better soon.
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Babs,
Spinal mets have worked well for me both times. Depends on where they are radiating....I didn't have any issues when it was the lumbar area, but RO gave me meds anyway, which I didn't have to use.
Thoracic spine was a different story. Had problems swallowing, but I got thru it, and the rads really helped with the pain. The mets were compressing spine in that area so it really was a godsend.
I'm sure you'll do fine, and it really does take away the pain and numbness.
L
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Momall, you and Dani are always in my thoughts and prayers. I wish we could take some of your pain and anxiety away. Just know that we are always here for you! I wish I had a mom like you! And please, like Wendy said, take care of you.
Babe, Lita is right, the rads really help with pain. God thing to get them now , before DD has baby. You will want to pick up and hold baby!
Have a nice, pain free weekend everyone! Hugs and prayers,
Claudia
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Wendy - you might want to check out the thread topic "Femara" rather than letrozole.
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Wendy, letrozole can cause severe nausea for some. It's the reason I dumped it the first time it was RX'd to me -- after my early stage tx. I've forgotten if you're on Ibrance w/the letrozole. If so, that one's notorious for bloating. Many of us on it complained about looking and feeling 6 mos. pregnant at times and constantly needing anti gas meds.
Good luck with the current round of rads, Babs! And isn't that baby due soon???
MomATT, I am also thinking of you and Dani and praying every day that she catches a much needed break. I read a comment not too long ago that said something like, we don't need every med to work every time. We just need one to be that home run!
Hope everyone is enjoying some cooler fall weather this weekend, as well as breathing a sigh of relief that Pinktober is on its way out! Deanna
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Hahaha Deanna, me too! I've seen enough car commercials, sweashirts for sale ect to gag.
Wendy, I got a little nausea and bloating with letrozole too. But if it continues and get worse I would ask your Onc to check for ascites. That is probably not it but after what I went through with a delayed DX I always send out the cautionary word.
babs, Hope the rad are smooth sailing and relieve the symptoms. Can't wait to hear about the new baby!
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I just started Kisqali (ribocilib) with Aromasin a week ago. Wondering if anyone else has experience on this combo?
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Wendy3 .... here is a link for the Femara (Letrozole) thread. https://community.breastcancer.org/forum/78/topics...
It doesn't appear to be very active though.
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Thank you everyone Artist I will definitely ask about that. I temporarily stopped letrozole to see if it helps and it did somewhat. Feeling really anxious about my next scan though have to say. I was hoping for more than a month after six months of chemo, my eyelashes aren't even back yet
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Babs that's interesting about the trials, they did not give this option to Dani.
Wendy I don't wanna be the one, but I think you should have at least an US to check for ascites or some scan, if that's how you feel they can't just say it's nothing. Thanks of thinking of us.
Hmm Lita now you got me thinking, they are doing this week a bunch of Thoracic rads on Dani, they did not mention hard swallowing….that's scary. She absolutely cannot afford to lose ANY weight.
Lindalou thanks for the heads up on Dee, good for her.
Deanna there you go…thanks for the heads up.Oh gosh how D hates this pink business!!!
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Moma, I've lots of rads to thoracic spine, going from T-7 to T-12. The beams did cross my stomach, but I was able to take Zofran and Compazine, and did well. What area of her thoracic will they radiate? If it closer to C-Spine, then swallowing can be difficult. There are throat sprays they can give her for that.
Lita, Know that we are all here for you. How are you today?
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There you go Lindalou, yes, they will do the Cspine too and from then on, I'll know more tom, I'll ask for the list, but it's def in the map. I hate that.
Curi-ous yeah that combiation is all the uproar now, the thing is she started Neratinib 2 wks ago and faslodex she took the 2nd shot, i don't think they will just drop this and put her on something else. They knew the rads were on schedule, and reading what Z told us about the Immuno and rads, it bothers me that she won't be on it at the same time.
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