Are you currently (or have you been) in a Clinical Trial?
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LFF,
I hope your surgery went as planned and that they are able to rule out a new brain mets spread. I know you will have to go through some recovery but let us know how you are doing when you are up to it. You are so amazing and inspirational to all of us!
Sending positive vibes your way!
Love, Susan
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Interesting article about antibody drug conjugates and drugs in trial. Susan's trial drug ARX-788 is among those mentioned. Encouraging
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moissy- interesting article- thanks for posting it
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Scans tomorrow and Tuesday results Wed....please I need PRAYERS!!!! I don't believe the Trodelvy is working but I am PRAYING THAT I AM WRONG!!!
Thanks Sisters!!!
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Nicole, Saying a prayer for you.
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CT scan results last week showed a tiny size reduction, but I believe it's just stable, the amount is so small that I think it's just in the measuring. But finally got my TM's today & they fell by 60 points which is great for me as my TM's have always been accurate. When I first went on this trial (tomisertib & abraxane) my TM's went up for 4 months, then dropped, then in January took a leap to 490, same in February, today they are 430.
Nicole, best thoughts for you today. I too thought I was off the trial last week due to progression but it just shows that we can be wrong.
I can't go back a page to see who is still here on this thread, but I remember that Susan is still here, hope you are doing well and any others that I have missed.
I wish they would get this site fixed, I haven't been able to read much at all as I don't have 5 mins to sit & wait for a single post to come up. take care all, cheers, dee
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Dee-Glad to hear your markers dropped and stable scan! Excellent news
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where is cure-ious
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Dee, glad to hear the good news!
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I suspect she is finding it annoying/difficult to navigate the site. Very little activity on most threads..
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Yes, SS, this so-called "upgrade" disaster, are you kidding me?!?! Made worse by these moderators' patronizing & gaslighting comments about their f*up: ..." we upgraded parts of the Breastcancer.org site, which has caused unexpected tech issues for some people" Really, you are still calling this an UPGRADE? And claiming its only a problem for SOME people?! Is ANYONE able to properly access this site?!
How long till this gets fixed and why does it look so horrible anyway, with all this white space and tiny text? What part of any of this is supposed to be an upgrade?! We need a better site, and this one ain't it...
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Ha Cure-ious! I was also royally ticked when I read the line about it cause issues of "some" people. Uh... no... It's just some of us are more vocal. I thought about posting a comment but felt I have already vented my spleen enough about the site. I'm still checking in as I am at a place in my disease that it seems things are going sideways and I need to stay on top of options but feel like chucking the computer across the room most times I try to access the site. At times I feel a bit like someone gawking at a multi-car pileup. What a disaster...
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FIRST Yes Cure I am with you and SS about the site I almost hate coming here now...between the look and slow-ness UGHHH
Ok ladies. So ..... Even though I still have pain in or should I say ..around my T3....the T3 and the C7 is all resolved...so the rads back in Aug 2021 worked. There is NO new growth anywhere. The 1 tumor that I had Y90 to in July and she didnt use a full dose (she didn't want me to have side effects like I had the first time if you all remember). Well on my scans in Nov 2021 that 1 tumor did light up...well it is still lighting up but it only grew very very minimally she said literally "millimeters" ... SO with that said...she wants to stay on the Trodelvy. David and I agreed. She also wants my IR in Wash. DC to look at the scan and see if we CAN/SHOULD re-do the Y90 to it. So I am waiting to hear about that and probably will not hear for a week or so.
Overall we are happy.. My MO agreed that the TUDCA is definitely helping my liver numbers and she admitted that she doesn't know much about supplements but this one seems to be doing something. We (David and I) also believe the 3 months of Ivermectin I was taking also has helped. I also told her that I stopped that and started Itracononzole...and only started at 1/2 dose 200mg a day for 4 days on 2 weeks off. She said ok as long as liver numbers stay good. I am working up to the 400mg...will do that for a few months is numbers are good if not I will go back to an increased dose of Ivermectin of 25 mg. (I was at 15mg.)
For those that know about Fenbendazole....the 222mg was NOT high enough and thats why it was not working for many. It needs to be 2000mg a day.
Anyway I am praying for this Trodelvy to keep working!!! Thank you all for sticking with me and praying for me. I have yet to have a treatment work for more than 3 months..so I am hoping this will be the 1st.
Love to you all.
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Great news Nicole! So happy for you.
News on LFF. She had some complications so has been in the ICU for the last week. She is doing much better and they expect she will be able to leave the ICU soon. For those of you who want to follow her progress, she has a CaringBridge site: https://www.caringbridge.org/visit/lizayore/journa.... She is so brave and strong of will. I know she will do what it takes to be back at home with her kids.
Let's all send her positive vibes, energy, prayers or whatever your beliefs tell you will help Liza.
Hugs, Susan
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Thank you Susan- I put a message on her caring bridge site. Hoping she gets out of ICU very soon and no more complications please!
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Oh my goodness thanks for posting Susan.
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Has anyone used Massive Bio for clinical trials search? https://massivebio.com/
I'm looking for experiences, reviews.
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Moth,
Have never heard of it before but will take a look.
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Hmmmm. Seems a bit sketchy when the home page touts a free consultation. Looks expensive… will be interested to hear from others.
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Reposting from brain mets thread:
LFF's son posted on her Caring Bridge site:
Liza died this morning at about 3:45. Eamon was with her when she passed. Corwin and I were here shortly after. She was very peaceful and comfortable at the end. I'll be bringing the girls in to see her this morning and say our goodbyes.
So heartbroken I can't really express my feelings right now.
See you on the other side, Liza!
Love, Susan
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Susan- such a loss! I’m so sorry.
Nanci
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Had scans on 4/20. Got my pelvis/abdomen results on the same day and there was continued dramatic shrinkage of my liver tumors as well as a return to a normal size of a peri-aortic lymph node. My tumor markers dropped down below the normal line. Was expected similarly wonderful results from my chest scans. Two days later, I was shocked to read that I had progression in my lungs including new "patchy groundglass" areas in my left lung (the "good" lung). Given the great response in my liver, we decided to stay on ARX-788 until the next scans in 8 weeks. So disappointed that this progression came so soon (4 cycles) after starting this miraculous trial drug. At the same time, I'm grateful for the continued shrinkage in my liver mets.
Looking for the next trial if anyone has any ideas. My MO didn't think the NIH/NCI Car-T trial was doable. There is a 30-day washout period, then your t-cells are extracted, then you have to wait 4 months for them to make the treatment, then another washout, then the one-month stay in their Bethesda hospital. Too many gaps during which there could be significant progression.
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susaninsf,
re NIH trial -- I too have looked into it. My MO said that thy are incredibly picky about who they take -- she feels that they almost screen for success. She, too, is not crazy about the pauses in treatment.
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Ref: NHI I had been in communication with them for weeks (before my scan in Feb.) you literally have to have the PERFECT TUMOR (in their opinion) in order to qualify. I didn't really mention this or if I did I don't think anyone caught it but at my scan in feb they saw "something" in my left lung....very very very tiny.... my MO didn't feel it was cancer...but I am not so sure...I will say ...that if it is.... and the tumor is what they want....I am going to go for it. The do let you go on treatment while they work on your cells....so I will do that and maybe Y90 again.
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Susan - I'm sorry to read that you have had mixed results. Are they sure the lung is cancer? I had a spot show up in my lung in November (until then the lesions had stayed in the pleura) but then it disappeared by the January scan. I hope that in 8 weeks your next scan will be better news, but good luck too with your search for your next treatment.
I made it through the first set of scans since starting the trial for enfortumab vedotin (an ADC approved for bladder cancer now being tested in other cancers). The liver lesions stayed stable and the pleural mets were stable or a little smaller. The pleural effusion is smaller, but of course I'm still getting drained 3x per week at about 300 mL a time. I've had a dose reduction which has helped with the feeling of malaise (a little GI upset, all over achy pains). Fatigue is still a real thing.
I am sorry to hear about LFF's passing.
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Diagnosis of tumors in the lungs by way of imaging is notoriously unreliable.
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Thanks newgardener and husband11. I've been dealing with lung tumors (initially had a 4cm mass plus other nodules) since my first Stage IV diagnosis more than eight years and have had two biopsies there. I have also had radiation twice, once to the 4cm mass and, more recently, to a mass that was starting to erode my lower ribs. Strangely, during my second biopsy, after doing seven cores, they were unable to locate any cancer. I think it was done by an incompetent resident. The downside of going to a teaching hospital. I have had up to 2 liters of pleural effusion and finally had a successful pleurodesis surgery. Those multiple nodules are constantly increasing except for my first scan on ARX-788. On my last scan, it showed increasing size of bilateral pulmonary nodules as well as a new area of patchy groundglass in my left lung.
So, unfortunately, I have years of definitive proof that it is BC cancer in my lungs. I do wonder, with this latest mixed scan report, if my lung cancer has become less HER2+. ARX-788 targets HER2.
Hugs, Susan
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In a dismal year marked by the moderator-induced implosion of this website, comes the unexpected terrible, horrible and unexpected bad news of the failure of multiple oral SERD trials...
https://www.fiercebiotech.com/biotech/long-wait-pi...
https://www.fiercebiotech.com/biotech/weeks-after-...
Only elascestrant did OK in its trial, and only because it segregated out the data to be able to show a PFS advantage over Faslodex for cancers that have an ESR1 mutation, which do not respond well to Faslodex.
So will this also be the case with ARV-471 (an oral PROTAC) when/if it makes it to phase 3 trials? The thought is at the least they will have to enrich/restrict the patient population to those with ESR1 mutations in order to show a clear PFS advantage, and meanwhile the oral SERDs will move over to early stage breast cancers. Huge Huge Bummer
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Cure-ious, this is a huge disappointment. However, it is wonderful to see you post ! I've missed your presence.
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Cure..thanks for posting the info and explaining..that is a huge loss to us Stage 4'ers..... ughh.
Glad to see you posting as well.
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