Are you currently (or have you been) in a Clinical Trial?
Comments
-
@weninwi - Ditto what @irishlove said. Don't go there Wen! You have so much knowledge and seek to understand even more. Let that drive you way beyond what your MO can imagine or guess for you. There are more options, and maybe things aren't what they seem. I was going through a rough patch with a lot of pain, and then I did some radiation, my pain went away, and it changed my whole outlook. I recently saw the quote to the effect of "when there is darkness, look for the light." Wen, you are one of the beacons of light. Hang in there. Lots of love, prayers, and hugs being sent to you.
Also, is there any way for your scans to be moved up so that you can know for sure what is going on? The not knowing just adds to anxiety.
1 -
irishlove and jsniffs,
Thank you so much for the encouragement, thoughts and prayers. I was able to get my scans moved up a week and my right upper quadrant pain has not returned. My husband reminds me often, "one day at a time".
2 -
I love the reminder to take it "one day at a time" and I also was encouraged by the statement Cure-ious made "going back to the literature gave me hope." I joined this thread to become more familiar with clinical trial language and current research trends and also to find hope. My oncologist stated to me "10-15 years" when I was first diagnosed with bone only mets. She followed that with the statement "but the drugs we are using now weren't even available 5 years ago so don't give up hope." I cling to that. I know hope lets us down a lot and that is painful. I also hold faith that each day we get closer to a cure. Whether that day comes for me or not I still hold hope in that.
2 -
We decided to stop Enhertu bc my bilirubin is back up and liver pain all back….and I am going to try my last treatment…of the BRCA gene drug.. sorry I cannot remember the name but its a PARP inhib…starts with a "T"…. anyway…after that…which it probably wont work I have decided Im done. no more treatment…I should have hopefully a month or 2 to live.
0 -
Oh, Nicole, what a tortured path you have had, and tho some of us take longer to run it, its a tortured path for everybody here. PARP inhibitors are, relatively speaking, great drugs for BRCA mutant cancers. Glad they had that on the backburner, and hope it keeps you well enough to be able to take the TILs they are cooking up for you… Am very curious what you find as side effects for PARPi. Many cancers are BRCA-like due to mutations in other genes, but they don't have a good list of those genes or a good biomarker, so many people who might respond are not eligible to take the drug, myself included. Good luck on this treatment!!!
0 -
CURE..thanks… my MO said that the PARP targets CHEK2 which I have had for over 2 years (2 biopsies now)…its showed in both biopsies… I am not counting on it working bc my cancer is just so powerful…but I hope it does. After that I am done. no point in going to Vineorlbine > spelling… im chemo resistant.
0 -
Oh, I think my Foundation One also had a CHEK2 mutation, but I didn't realize that would allow one to get PARPi? at least not outside of a clinical trial- was there something you had to do to get insurance to pay for that?
I guess you are taking talozoparib, that one is about 100x stronger than the other PARPi
Agreed about the further chemo, there is surely no reason to that. Immunotherapy is the category you haven't had much of, but the TILs trial will show if that is an effective category. And I think if one responds, then after that one goes without any drugs. We really need something that we withstand the treatment then get to be free of the drugs
1 -
@nicolerod We're so sorry you're struggling. We sincerely hope your new treatment will work wonders for you! For some more information, you can read about Talzenna here:
Sending gentle hugs and good wishes to you.
—The Mods
0 -
Cure- you are correct insurance is not suppose to cover the PARP unless you are BRCA + that is why she was going for compassionate use for it..but for some reason my ins. may be covering it…strange.
0 -
Nicole, I am so sorry to hear that. You are always in my prayers.
0 -
Thanks Husband you have been a dear friend on this journey.
0 -
CURE-IOUS. we are all blessed to have you here. I can only hope that my MO knows cancer like you do. Thank you.
NICOLE, I've been following your story since you joined us here. I've always hoped you finally caught a break. It must be exhausting to be constantly chasing a treatment that would give you more time. Maybe this time.
Everyone else, best of luck to you all in finding a treatment that gives you all the time in the world. I continue to do well on just faslodex. 6 yrs now.
2 -
GailMary- Huzzah!!!! Six years on Faslodex! Somebody should start a thread where people can record a drug that gave them a great response! How long has anybody made it on Xeloda, for example, or Ibrance, etc…
0 -
2023 ASCO
Practice-changing info about Xeloda:
1) 7/7 schedule better than 14/7!
2) Diclofenac cream for hands/feet
3) If adding in tamoxifen, taking at NIGHT is best
2 -
@cure-ious I appreciate all your knowledge and expertise more than you will ever understand. Thank you so much for supporting this group in a way that no one else can. Bless you.
2 -
Nicole - you have been a trail blazer in so many ways with all of these trials. I have always been rooting for you and praying something will work. I'm sorry to hear your pain is back and levels rising. Know that we are all still rooting for you no matter what you decide.
GailMary - I am also impressed with your 6 years on Faslodex. I'm 3.5 years on Faslodex/Verzenio and am finding I have fewer and fewer spots without lumps on my rear each month. LOL.
Cure-ious - I had also read that about Diclofenac cream on hands and feet and have started trialing that on my feet at night when my neuropathy starts acting up.
0 -
Cure - I didnt get a great response to Lynparza as I was hoping - maybe about 14 months total, but was already showing signs of failure maybe 6 months in, with the cancer mutating on the BRCA chain itself. I was reading last night about trials to reintroduce PARP sensitivity and was wondering if you had seen anything similar? Most of the time these studies seem to be for ovaca ladies.
Nicole - you may as well try the Talzenna if its pill form and can maybe beat things back for a bit. The sister drug was easy with no neutrophil drops, although I appreciate you are in a different ball game at this point. Are you still involved in the NIH tumor trial situation?
0 -
Sondra, Although 14 months sounds like better-than-expected results for a PARP inhibitor, you are right that resistance can develop quickly in various ways, including reversion of the BRCA mutation.
An interesting approach to this problem is looking at how PARPi can enhance immunotherapy, and in prostate cancers they are seeing some responses to this combo even in cancers that do not have BRCA mutations- and indeed this has been clear for a long time with PARPi monotherapy, but they have yet to identify biomarkers that indicate which patients should be taking these drugs.
Here is a combo trial, for example:
0 -
Sondra..I am still involved with NIH but they 1. will not tell me if I am growing the "right" cells they want UNTIL AFTER my scans July 17th… 2. I will probably have brain mets at that scan and be eliminated anyway.
0 -
I have been pretty quiet on this thread, mostly trying to listen and learn. I found out Friday and spoke to my MO today that I have lymphangitic spread to my lungs. I have a small 8mm nodule in the right lower lobe and bilateral small pleural effusions. He is giving me a few months to a year as a prognosis. The plan now is to switch to Piqray as I have the PI3K mutation. I will know more on Tuesday when I meet with him. This just came out of the blue after 3+ years of stable bone only mets so I think we were both caught off guard.
I guess I'm wondering if anyone has come across a trial for lymphangitic spread? I went to clinical trials.gov but didn't see anything matching that keyword. Google scholar articles were less than encouraging. It's still my intent to fight this no holds barred at this point. I don't know if I can combine Piqray with IV chemo or not. I found an article that had some success with cisplatin, which I realise is on shortage right now, and also eribulin but both of those were case studies, not trial data. Anyway, I'm just on the hunt for info to try and prepare myself for an informed meeting with my MO on Tuesday. Thank you.
0 -
Oh, emac, I'm so sorry, what a shock!! One thought is for a second opinion and consult if there is someone familiar with this condition, I've never heard of it…
One review I just saw mentioned:
There are isolated reports of considerable remission of pulmonary lymphangitic carcinomatosis in various malignancies with hormonal therapy, chemotherapy, tyrosine kinase inhibitors(eg.apatinib), and certain monoclonal antibodies(e.g., bevacizumab, cetuximab). A report of intravenous eribulin (Halaven) successfully achieving rapid symptom control and partial remission with the disappearance of pulmonary lymphangitic carcinomatosis in a case of metastatic breast carcinoma in visceral crisis has also been published. I tried to paste a link in but this stupid site does not allow it, so I will just paste the relevant part of this story in a separate post…
Regardless, this is a report from 2018, which is considered like the dark ages in the scientific literature, so I'll also check if there is something more recent in PubMed.
I would also worry that Piqray is a hard drug, if there are other options that might work in the near term with fewer SEs to allow you to investigate all of this without fighting SEs? Maybe another question for a second opinion..
1 -
BMC Cancer. 2018; 18: 839. Published online 2018 Aug 20. doi: 10.1186/s12885-018-4725-7PMCID: PMC6102904PMID: 30126360
Successfully treatment by eribulin in visceral crisis: a case of lymphangitic carcinomatosis from metastatic breast cancerCase Presentation: In 2010, a 37 year-old black woman had mastectomy and homolateral axillary dissection for invasive carcinoma in her left breast (ER/PR-pos; HER2-neg). In February 2014, the clinical exam reported a skin relapse in place of
mastectomy scar. A CT scan showed multiple and bilateral pulmonary lesions and left pleural effusion. Chemotherapy with paclitaxel 80 mg/m2 and bevacizumab 10 mg/kg was initiated. Follow up imaging showed a positive partial response, so maintenance with fulvestrant and bevacizumab was initiated in August, 2014. In February 2016, due to further progression in lungs and multiple bones sites, she was treated with exemestane 25 mg and everolimus 10 mg with an initial partial response.In October 2016, she reported a dyspnea with dry cough. Left pleural effusion and non-specific infiltration were observed on the chest x-ray. We evocated first a mTOR inhibitor-associated non-infectious pneumonitis. According to recommendations for patients with adverse events grade 3, everolimus was interrupted and corticosteroids administered. There was only a slight clinical improvement. The patient was submitted to bronchoscopy which shown a diffuse infiltration of lymphangitic appearance of the superior left trunk. The bronchoalveolar lavage fluid was negative for bacteria, acid-fast bacilli, and fungi. However, many adenocarcinoma cells were observed. Therefore, we concluded there was disease progression leading to visceral crisis and eribulin was started on 11.17.2016.
After four courses of eribulin, a CT scan was performed and showed a significant reduction of pulmonary lesions and previously identified micronodules had disappeared. CT scan at 6 months confirmed radiological benefit.
Overall, this patient benefited of 8.5 months of eribulin with a significant clinical benefit. In August 2017, CT scan showed a major progression disease with several lesions in lung, hepatic and bones. She started a new therapeutic regimen by fluorouracil and vinorelbin with a satisfying efficacy on all target lesions. Progression free survival was 7 months. In March, 2018, the patient had a severe asthenia, dyspnea and diffuse bone pain. Chemotherapy was stopped and she benefited of best supportive care. Death occurred at hospital on 04.24.2018 with an overall survival since diagnostic of 50 months.
0 -
So note she got 8.5 mos and then 7 mos from a chemo, so it was quite rapid-progressing. Still this is better than a few months or a year, and we now have immunotherapy and stronger drugs. Piqray might work wonders, it really does for a subgroup of patients. Or, you could try it and if its too hard then switch to Capivasertib AKT inhibitor which should be FDA approved sometime later this year. But given this report, maybe keep eribulin in mind for the future.
0 -
Also there are a couple of newer mutation-specific inhibitors of Pi3KCA in clinical trials, may be better than Piqray
0 -
emac, be sure to look at the thread I vacated 4 weeks ago “Piqray users, what is your experience?” although I may check back there to see how others do with it. Relay Therapeutics actually has a couple drugs in trials. Other companies are also designing meds that are more narrowly targeted, hopefully avoiding some of the worst side effects.
If you do try alpelisib, pay close attention to the information you’re given particularly the blood glucose parameters. I insisted on starting at 200mg daily. My troubles began when trying to increase the dose. The hyperglycemia caused me to become dehydrated. I had an endocrinologist who treated me as if I were a diabetic. I lasted 6 months on it.
0 -
Thank you so much @cure-ious and @vlnrph. I had run across that case study but I fully agree that even 8.5 and then 7 months was better than my prognosis. I hadn't heard of this either and I think it's weird that I went from stable bone-only mets to end stage lung so randomly.
I appreciate also the info on Piqray and I will find that thread. The online literature mentions the hyperglycemia and hypertension but I don't really think it gives the full seriousness of consequences. I will note the Capivasertib AKT as something to be looked at also.
I am now on a leave from work so I will have time to focus on this and really pay close attention to things. Again, many thanks to you both. I appreciate it.
0 -
emac877,
Cross posted from My Husband, My Life thread:
I'm so sorry about your latest update. My thoughts and prayers are with you.
Not sure if the Travera test would be pertinent to your situation? But it's my understanding it's more successful with fluid specimens rather than solid tumors. It's also my understanding they are not charging for the test at this point, but the cost of the biopsy procedure would be yours. Also, whoever does the biopsy must follow specific instructions, so it has to be coordinated with the company. BCO had a "Travera" discussion thread with more information.
0 -
Here is a direct link to the Travera thread @weninwi is referencing:
0 -
Here is a summary of CDK4,6 inhibitors, sounds like the field is moving towards greater inhibition of CDK4, less of CDK6, and even suspect such inhibitors might be useful post-progression on CDK4,6i. CDK2 inhibitors still working out kinks, they don't seem to get monotherapy activity and trials are soliciting those with Cyclin E amplification or over-expression.
1 -
Thank you Weninwi and Mods. I did check out that link and will mention it to my MO. At my meeting with him on Monday I did not have enough of a pleural effusion to do a thoracentesis. They have a sample of my tumor from 2019 and may be able to use that if Travera is now testing solid tumors. My bone mets are sclerotic so they may not be optimal for biopsy.
0
