How are people with liver mets doing?
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dont know if this was covered elsewhere on the forum but even if it was i think its deffo worth sharing again. especially those on cdk4/6 inh. should read it imo. Drug-drug interactions between palbociclib and proton pump inhibitors may significantly affect clinical outcome of metastatic breast cancer patients - ESMO Open
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I’ve been MIA for awhile.
I did go to Mary Crowley Research Department yesterday. A two hour appointment with the oncologist and nurse talking about three different trials they have for me. It’s not a done deal yet. Next week I’ll have a four hour appointment. UGH. I have to jump through lots more hoops before I start.
The trial she wants me to pursue first is a Phase 1 for a new drug that is sort of like Keytruda. I’ve never tried immunotherapy before. The SE don’t sound too bad but the time commitment is crazy because they are testing for half life, etc.
The drug is called EU101 It’s an Agonistic Anti- CCD137 ( 4 -1BB) monoclonal antibody
So, while excited that there is something to try, I’m feeling overwhelmed today
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Grannax, it is good news that there are options for you, but I can understand how things could feel overwhelming right now. I know it is difficult to do, but take a few days to digest the information you have been given. Try to relax. Breathe deeply. Discuss things with your family, if it will help. You might not feel it right now, but you are a strong woman. A four hour appointment might be exhausting, but you will make it through it. The time commitment for the trial itself is something you will need to consider. How frequently will you have to attend appointments? Will they become less frequent over time? How quickly will that happen. The trial sounds promising in that it is a chance to receive immunotherapy. I am here for you for support and strength as are many others. Please keep us updated.
Hugs and prayers from, Lynne
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Grannax- yippee! I really was glad to see your post. Trials can be rough the first few weeks then you get into a routine. They usually scan at 8 weeks to see if it is working. 🤞🏻keep us updated
Dee
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Thanks, Lynn and Dee. I am already less overwhelmed because I was able to talk to the nurse today. I was focusing on the wrong trial.
The one that’s open right now sounds less overwhelming with fewer SE. it targets a protein called. TREM1 on myeloid cells on tumor tissue.
The trial is MCMRC IRB #20-41. It’s called PY159 Phase 1.
The immunotherapy one might be available later.
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Dear Grannax, it is amazing how you and your team navigate through rough waters. Prayers for you to stay calm and collected - your team is there for you. Please keep us posted. I had this company in my IO bookmarks for a long time and am very glad they start their clinical trials. These trial (PY159 and PY314) could also be important for Nicole. Saulius
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SORRY EDIT***** this. message was in response to Saulius:
My MO would prefer a Phase 2 or 3 if we do a trial......unless it was an absolute perfect fit with awesome results I don't think we would go with a Phase 1
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Grannax, I'm glad to hear that they are serious about finding some options that are a good fit for you! Clinical trials are overwhelming at first, but it does get better!
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Here is an interesting summary of previous trial data on the use of high dose estrogen as a treatment for heavily pretreated patients. I thought this might be of interest, as so many of the women on here have been previously treated with AI's, and that apparently primes sensitivity to high dose estrogen treatment. As well, it has worked on women who are ER/PR negative.
The use of high-dose estrogens for the treatment of breast cancer (maturitas.org)
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I never thought I would agree to a phase 1 either but here I am, Nicole. Maybe I can pave the way for it to be a phase 2.
I also found out that Mary Crowley HAD the exact trial I was looking for with my ESR1 mutation. It’s closed now. Grrrrr. But doc said it had such good results that it should be approved soon. So, for those of us with ESR1 D ( ?) we will get to take it without being in a trial. So, if I can just make it a little longer......
Good info BSandra. Thanks, Katyysmith.
I should hear from nurse today to set up long appointment for next week. I’m ready to get this thing moving forward
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Grannasx my comment was for Saulius...he suggested I meight look into a trial that was Phase 1.... it was not meant for you I will edit it...I am happy you found something to go with.
I am suffering right now...I don't know if its because I am weaning off the Oxycotin (I am now down to 10mg a day from 60mg) or if its from the chemo or the radiation to the spine but my limbs get this weird feelings..arms and legs...not like pain...but a little ...but uncomfortable...so bad that it makes me feel like the only way to cure it is to cut off my limbs..its that uncomfortable!!!!!! I cannot even sleep (even with taking something to make me sleep, I sleep for like a couple of hours then it starts back up)... I am literally wanting and considering just ending this all now... I just want. to feel normal...I don't know what to do. I will of course tell my MO on Monday...but shes not gonna know what to do or what its from...
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Dear NicoleRod, you are obviously in a difficult place; physically and emotionally at the moment. I am wondering why you are weaning off the Oxycotin at the moment, when you obviously need pain relief. I hope your MO can give you some reassurance and practical help on Monday. A gentle hug from afar.
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Thanks Denny..I guess I didn't clearly explain what the arm feels like...its not really like PAIN...its like the MOST UNCOMFORTABLE feeling I have ever felt...I cannot put words to it...but finally at 530am I took my 10mg of Oxy that I normally take at 7-8am.... I am weaning off the oxy bc I was on it for the pain in my spine..that pain is very very low now and I don't need to be on pain meds and don't want to be so I was weaning off....but now I have this...and I don't know if its neurapathy ?? or if its from the rads to spine? or from the chemo (neuropathy) or if its a side effect from weaning off.. If its neurpoathy and I take the oxy and it helps (which it did) then how will I ever get off them...if its not neuropathy and its just from weaning off...how will I ever be able to wean off??
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Nicole,
I feel for you. You've had such a rough time.
Does your center have a pain specialist? If not, what about Medstar, where your other doc is? Someone should be able to solve this puzzle for you. I know that if you're not feeling well, it's difficult to think about who to call, etc., but I'm not sure that your onc is even the right person to answer these questions. Maybe your RO is a better starting place?
Hope you have a better day today.
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Bev...my RO ...I left a message with a question over a month ago and never got a reply they suck... I also mentioned that today in the message to my MO so that maybe she will ask him...INOVA is in the process of getting a new Pallitive Care Doctor but he doesn't start until mid Nov...until then the MO's can message the Pallitive Care Dr. that works in the hosptial (i met him and really liked him) hopefully MO will talk to him.
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So, I’m finding out that clinical trials are a whole new world. The nurse called yesterday and said she cannot set up my appointment for next week until she hears back from the sponsers for all three trials. WHAT?!?! That’s not what she said on Thursday.
The third one is MCMRC IRB #21-26. The drug is DT2216, an Antiapoptotic protein targeted Degradation Compound
It will be a full time job. It’s on a four week cycle with two infusions each week. Plus lots of extra labs in between. Ugh
So, I’m overwhelmed again. Nurse said she hopes to hear from them by Monday and call me to set up an appointment. I’m not holding my breath.
I feel like I’ve entered a whole new world. The rules change hourly, ever evolving surprises from one day to the next.
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My goodness, Grannax, I understand why you feel overwhelmed. I am sure once the preparation phase has been completed, things will settle down. Is the cancer center where the trial is taking place close to your home? I hope you won’t have a long commute. Is there someone who can drive you if you don’t feel well? That probably won’t be necessary, of course. I hope you continue to let us know about how the clinical trial works. It’s an unknown world to those of us who have never participated in a trial. I hope that once things settle down, the trial is a success for you. I also hope that your visits to the center will become less frequent after the first few weeks. I am keeping my fingers crossed that you hear from the nurse on Monday or Tuesday so things can get moving.
Hugs and prayers from, Lynne
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grannex- I feel for you. When I was in the clinical trial at U of C I felt the same way. I was used to being a part of the decision making process, even driving it. While in the trisl I was told what to do, when to do it, and who I’d see. I had no control. It makes sense as they have a definite protocol they have to follow and there can’t be any exceptions. It was just hard going from one extreme to the other. I hope you get your appointment soon so that your stress level can go down. May these trials be the answer you need.
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grannax, I've been in 3 trials & each one is very different depending on the trial RN, who is sponsoring the trial & how strict the protocols are. The Ibrance trial was pretty easy, I was allowed to take a variety of meds to offset SE's except for the best/ cheapest blood thinner when I developed a blood clot. Was on that 30 cycles.
The Alpelisib trial was horrible. I wasn't allowed to take anything to mitigate SE's. I lasted 10 days before the diarrhea, projectile vomiting & whole body rash was just too much to take even on the lowest dose.
The trial I'm on now was pretty arduous at first, with labs every 4 hours for the first 24 hours, too many scans etc. But now that I"m done with all of those, it's pretty good. You can get overwhelmed with all the extra testing etc, but once you're past all of that, it should be pretty good. I'm always open to a new trial as it's given me lines of treatment that I wouldn't normally get. And I have to travel 5-6 hours each way to get to the cancer centre that offers them. good luck!! I'm rooting for ya! cheers, dee
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LFF, I started this now popular thread-! "Are you currently (or have you ever been) in a clinical trial?" - in 2018 because I was terrified of becoming just a lab rat! I had had such a good relationship with my MO and felt that I had some control over my choices. As it turned out, I had a good clinical trial team who really took good care of me and I don't remember having any SEs. The schedule was exhausting and overwhelming at first, but became much more manageable. I was in the trial for 6 months.
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Grannax- I wish the best for you.
I have never been in a trial. Though that is one reason I wanted to go to a larger cancer center versus my rural hometown oncologist. We do not have access to trials at home. But,,, when/if I do opt for a trial I don't know. Will I do it??? The traveling back and forth for the testing, the being told what to do and not having control over things, I just don't know.
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Candy,
I hear what you are saying. MBC takes away so much control from our lives as it is.
But, trials, in my mind, offer us the chance to be exposed to drugs that could work for us that maybe we could otherwise not be able to access. With that, there will inevitably be tradeoffs. So I think for each of us, we need to figure out when that time comes if the tradeoffs are worth it.
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I agree that we get access to drugs that would not be available. When Ibrance came out on trial, it was brand new. Had I not gone on the trial that line that lasted me 30 cycles would have been lost to me as it was only available as a first line when it was approved. I would have had to go on something else in the meantime.
The trial that I'm on now isn't available anywhere except on a trial & while I am having SE's it's not from the trial drug it's from the standard of care drug nab-paclitaxol. So far, I have gotten 8 months out of it & not used up another line which will be there for me.
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Oh I agree trials are important. I got 4years out of Ibrance, so I am glad that people participated in the Ibrance trials back when and the drug was approved for use. And Yes trials allow for us to use meds we would not have a chance otherwise to use. I just am a worrier. So a trial with unknown side effects, the loss of control issue, and the travel back and forth would be hard for me. But a trial may be in my future. Who knows.
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Regarding trials, I am one who wants a fair bit of knowledge and control, and teamwork with my medical providers. I don't feel that has been taken away with the trial, because my onc supported me at the beginning when I told her the only way I would try another re-start after having to stop twice was to titrate up from 1/2 dose of the main trial drug. And we stopped at 2/3 dose and nobody pushed me to do more. She said the sponsors wanted to show efficacy, and that rules were not cast in stone. Looks like the sponsors and I both got what we needed. Fortunately, the trial I'm on is offered at my cancer center so I did not have to start seeing a new oncologist. The only problem I had was that my first trial nurse did not keep a good eye on me, and I ended up in the ER for fluids and electrolytes. My appointments are usually three or four days per month. I have looked at it as a job that earns me these drugs, and I have paid very little in deductible and copays since I started. This is a phase II trial. I do think I would have to be completely out of options before I would do a phase I trial that is looking for the highest tolerable dose. That is an old-fashioned, barbaric mindset and I am one who often gets the strong or unusual reaction to drugs.
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So, my friends, I am ready to share what is going on with me now. I am worried and in suspense. In July/August both my breast cancer marker CA 27.29 and my GI marker 19.9 (which we started watching when the presumed bile duct mets happened) started to rise. PET-CT and CT with contrast every 12 weeks continued to show NEAD, and there were no symptoms of liver or bile duct mets. I know that when my markers do this slow rise something is brewing. So I asked for an abdominal MRI, and it also showed NED. I brought up the idea of whether there could be cancer in the colon, stomach, or pancreas as both markers can apply to those. Onc said ok we will order a colonoscopy. Then last week's PET report came out NEAD, but I saw no CT report for a couple days. Then my onc called me in the evening. The radiologist described 4 cm of cancer in the transverse colon! And said it correlated with an area of uptake on the PET! We cannot know yet if it is ILC mets or primary colon cancer. Friggin hell. If I have colon cancer it is my fault because I avoided screening colonoscopies as I was always dealing with enough garbage already. My onc says they would not normally be ordered for someone with mbc. Or this could be ILC mets to colon, which is what my onc with thinks more likely. I hope it is so at least I won't have the guilt. I do not know exactly how it would be treated or how bad of a prognosis it carries either way. So, colonoscopy and biopsy next week then the wait for pathology. I hate this. I am having more than usual GI discomfort. Thanks for listening.
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Oh Shetland I am so sorry to hear you are going thru this. Please, please keep in touch with what the biopsy shows and the plan of action. My thoughts are with you.
I have never had a colonoscopy. I just turned 51. No family history of colon cancer, but no family history of BC either and here I am. I do have weird bowels. Constipation and then diarrhea. But been that way for years. I think IBS, but not diagnosed. I know, TMI. But would I know if things changed with my bowel habits? Scary.
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Thank you, candy. It's hard to say what bowel stuff means when we are taking cancer drugs. The thing about screening colonoscopy is they can find and remove a precancerous polyp before it turns into cancer that would show symptoms. Says the woman who was too chicken to act on this. I have a Lynch mutation so I was supposed to do a lot of screening.
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Dear Shetland, this MBC is a rough ride, I hope it becomes smoother for you soon.
A big thank you for giving us the details of your diagnosis . I have avoided some colon tests thinking anything out of the ordinary will show up on scans, I will accept them in the future.
Another thank you to all of you who have been on trials, because of you I have been given extra time, for example 2 years on Ibrance.
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I would do my clinical trial all over again if I could. It got me through until Tukysa was available to all for brain Mets. Totally worth all tge travel snd coordination of treatment.
Shetland- I am so sorry to hear your news. I hope that you get the answers you need soon.
As far as colonoscopies are concerned, I have had to get them every 3 years since I was 16. I have/ had IND now. I was diagnosed with ulcerative colitis at 16. I appreciate how people really don’t want to do these procedures. I can say the prep for them has gotten so much better over the years. If you can , schedule them for early in the morning so you don’t have to be NPO all day.
Hugs Shetland.
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