Are you currently (or have you been) in a Clinical Trial?
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Jennifer - thanks for sharing all the details with us. Lots of positive thoughts coming your way to "pass" the final gate to move forward with the trial!
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Wow, Jennifer, my hat is off to you and I love how you described everything. My testing and trial have been a piece of cake compared to this!
JFL- The area under the tip of my chin got so hugely swollen like a bullfrog and more painful overnight, that I finally talked myself into going to the MDA ER yesterday. Glad I did, because I got reassured that this was NOT related to my ONJ - it is cellulitis, a bacterial skin infection (weird!!!) not systemic which is why my blood work has been fine and I've had no fever. The real bonus was that they did a scan of my neck and jaw and said my bones looks good. I'm on antibiotics for the infection and I'm sure the pain will abate as soon as this swelling goes down.
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Katty, great news to hear you now know what is going on and that it is easily treatable. Must be a huge relief!
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Katty, I'm so glad you went in and they figured out what's going on! I hope that your cellulitis will respond quickly to the antibiotics. You probably already know this, but a probiotic or greek yogurt may be a good idea to replenish your good gut bacteria while on antibiotics.
Jennifer, Thank you for your very detailed explanation of the trial approval process. I have everything crossed and am praying that your tumor makes the right amount of mesothelin!! Based on my reading, this trial sounds very promising!
Best wishes to all and gratitude for sharing your knowledge/experiences,
Theresa
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No chemo break here. I begged for chemo Friday, as it is working and reducing the pain. I'm on Gemzar/Carbo, Two weeks on, one off.
And, if I pass muster, that'll work out for cell collection day, as the trial only requires a one week wash-out. TBH, we might be planning on skipping week two, to make sure that all the platelets are happy.
It really depends on what we hear from MSK.
I did pursue the trial that Judy did, and got really close, but they said that I'd had too much radiation to my spine. I'd imagine that after the publicity the trial got, they had their pick of candidates. I hope everyone they selected gets great results, and helps move this therapy into conventional medicine for those of us with solid tumors! Shout out to the liquid tumor crowd too, but this approach really works for them - they might not need my mental support.
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Jennifer,
How are you keeping the platelet levels up on Carboplatin/Gemzar? Our platelet levels went down too low after one treatment of Carbo/Gemzar and they cancelled/postponed the second one. Are you getting platelet transfusions or some type of medication?
Thanks
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An interesting paper appeared a few weeks ago in Cell. It finds that some cancers that do not express high levels of PDL1 on their cell surface (and therefore do not respond to immunotherapy) do strongly over-express the PDL1 protein, but instead of putting it on their cell surface,these cancers send the PDL1 protein out to lymph nodes, packaged in vesicles called exosomes. Acting from a distance in the lymph nodes, these exosomes are able to tie up the immune cells early, and protect the cancer cells from being discovered. For unknown reasons, the PDL1 protein in the exosomes is not sensitive to checkpoint immunotherapy drugs.
Interestingly, blocking the exosomes from being released by the cancer was found to be sufficient to enable the cells to be killed by the immune system. Moreover, cancer cells genetically edited to prevent forming exosomes could be reintroduced into mice and worked like a vaccine to trained the immune cells to hunt and kill all cancer cells in the body- in other words, these were dominant to the normal cancer cells. Even short term treatment with drugs that block exosomes from being made was enough to enable cancers to respond to checkpoint inhibitor drugs. Two possible implications: 1) add exosome inhibitors to immunotherapy, or 2) remove your cancer cells, CRISPR-edit them to stop producing exosomes, grow them up and inject them back into you to act as a personal home-made vaccine against your own cancer. Much testing and trials awaits, but this is excellent and exciting progress!
https://www.nytimes.com/2019/04/04/health/cancer-i...
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Bornfighter,
I've had a bad reaction to platelet transfusion, but we could do it again if I truly needed it, with pre-meds and observation. MO says that if I really need it, they will do it, but I haven't gotten to a medically dangerous level - just to a level that prohibits chemotherapy.
So far, we've just done "tincture of time" to get the platelet rate up. I'm getting good results with this chemo with lowered doses and some skipped weeks.
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Dear all, after going through this thread, I have a question: where are HER2+ people? Are they doing so well on HER2 targeted therapies that they do not do clinical trials and are quiet or what is the reason?
Saulius
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Bsandra, I’m HER2+. I’m treated at MD Anderson and have participated in two trials/studies. One was a one-time infusion of Perjeta (LCCC 1214) and the other is occasional labs to learn more about CTC’s (PA16-0507). I am stable on my first line treatment, so I just live fairly normal until it stops working. My MO specializes in HER2, so I’m confident that I’ll be informed if something comes along that would be better than H&P. So, I’m quite here but read always to stay up to date.
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Bsandra, I know women on a DS8201a trial for HER2+ metastatic breast cancer. It appears to work well. There are so many great treatments for HER2+ cancer these days, that many of us hope that our cancers will eventually turn HER2+! Best! Theresa
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Thanks again Cure-ious!! Love the idea of homemade vaccines
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Thanks, Theresa! I mean I know DS8201 trials and others too but usually people who do well, stay off threads and I wanted to encourage to share their experiences in clinical trials too because you, HER2- ladies, are so active. I did not want to be annoying, sorry!:)
Saulius
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Hi all. Just wanted to give an update. I learnedthere is more progression so the Alisertib and then along with Fulvestrant for the last two months didn’t do the job. I’m on to IV chemo. Disappointed but knew it wouldn’t last forever.
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Sorry to hear that, Ann!! Remind me, do you have the PI3K mutation? This drug might work best on those cancers.. Really, all the targeted drugs will probably work best in combinations, for example we've known for two years now that lab studies show that a Alisertib-Alpelisib combo is way more effective than either drug alone, and yet there isn't even a trial started to test that! Soon Alpelisib will be FDA approved, and one would have hoped that they would be pushing to use it in combos, but there is nothing cooking...
Well when you get to stable you hopefully have great response from the immunotherapy combos and CAR-T trials. The abstracts from ASCO2019 which will be available to the public May 15, and should tell us a lot about ongoing trials.
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BSandra, I´m Her2+. I participated in the HER2Climb trial, but was dismissed after three cycles due to progression. I think that for most HER2 positives the available targeted therapies work really well, and for a long time. I belong to the HER2-minority where neither targeted therapies nor chemo treatments work at all. HER2+ BC really sucks because it´s very aggressive.
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Cure-ious- yes- the PIK3CA and the PIK3C2
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Cure-ious yes I have the PIK3CA and the PIK3C2B
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So I pulled the short straw on my oral taxane trial (randomized. 67% oral, 33% IV) and started on IV Paclitaxel on Tuesday. It was all rushed so I couldn't get a port put in before the treatment. Was completely wiped out on so many fronts. Also, just after I started my two-week washout period, I became horribly itchy from my neck down to my knees. Didn't have any problems while on the trial so why after I finished? Slathering on analgesic lotion helps a little. Ice packs help a little. Finally gave in and started taking a steroid pak. Didn't want to take steroids since there are already steroids in my pre-meds but don't know what else to do.
Anyone else experience uncontrollable itching?
Hugs, Susan
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Susan, I've been thinking about you. The itching sounds miserable! Besides icing and moisturizing, I wonder if a topical steroidal treatment like Clobetasol might help. It sounds like you have a large surface area involved, so that may not be feasible. If the itching was caused by Alpelisib, then hopefully it will resolve soon. I'm sorry that you were randomized to IV paclitaxel; oral administration would be easier. Will you be able getting a port? I'm praying that you get relief from the itching and that paclitaxel is very effective for you!!! Hugs!
Ann, I'm so sorry that Alisertib/Faslodex was not effective. So very disappointing! I hope the IV chemo you go on is gentle in terms of side effects and effective against your cancer!
BSandra, Asking about HER2+ clinical trials is NOT annoying at all! I'm HER2 low, so I've been watching the DS2801a trials. I know women who have been on it for over a year. I mentioned the effectiveness of HER2 treatments in an attempt to be encouraging. I didn't intend to minimize HER2+ metastatic breast cancer! I apologize.
Hugs and very best wishes to all! Theresa
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Ann 1999- I am so sorry to hear about the progression on apelisib- so you got about 8 months on the drug? What will you be changing to?
SusanSF- bummer about the short straw! I hope you get a good long time on this chemo and they come up with something fabulous to bail us all out soon!
I’m on second month of Everolimus- very tolerable except low ANC which bounced back in a week. TMs went down - just hope it will work.
Hug
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Thanks everyone for your kind thoughts. I’ll be going on IV Paclitaxel. SusaninSF I think we will be on the same drug. Was given the option of Xeloda or Paclitaxel but chose the IV drug. Don’t really know why just hoping it will have stronger and quicker punch. I was on xeloda back in 2013 without barely any SE so maybe I can go back to it at some point. Not holding my breath though. My MO says my tumors are hormone and chemo resistant- luminal B. ADDK I can really relate. It truly sucks.
Best to all
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ann1999- wishing you great success with the paclitaxil! There are some studies in Europe looking at ILC - ROLO in UK and GELATO in Netherlands -using immunotherapy some thoughts that ILC is more susceptible to immunotherapy than IDC. Most docs in this country treat ILC the same as IDC. We’ve got to stick around long enough for this.
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NKb- appreciate your well wishes. Yes aware of those trials. I actually texted with the directed if the ROLO trial last year who told me a trial was supposed to start in the US but I haven’t seen anything. I haven’t seen any updates on how the trials are going - quess it is too early. It seems both drugs ATezOlizumab- Tecentriq (Gelato) and Crizotinib (ROLO) are FDA approved - for other cancers. It would be great if we could have access through maybe the MATCH trial but that is wishful thinking.
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Ann1999- when I had my second opinion at UCSF- she was very uninterested in my questions about ILC until I mentioned ROLO and the crizotinib- then she perked up and said UCSF was advising on that study. Maybe they will get more involved if the early results look good. Only a few places even have a registry for ILC - that would be a beginning.
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NKb- that is really good to know!
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Ann199, Did you also try Alpelisib, or is that an option for the future?
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Theresa, Thanks so much for your thoughts! I had a port put in yesterday and it seemed to go well. Had my second infusion right after that. Still itchy but the rash is looking like it's healing. Going to see Dr. Bernice Kwong at Stanford who is a dermatologist specializing in the treatment of cancer patients. They do same-day appointments at that clinic and she was able to squeeze me in tomorrow! UCSF dermatology couldn't see me until Monday and they don't have anyone who specializes in cancer patients. A woman in my support group said she went to MSK where they also have a cancer-patient-focused dermatology clinic.
Ann, My first infusion left me fatigued and disoriented but I think a lot of that was psychological because I have PTSD about IVs. Now that I have my port in, the second infusion was much easier. My MO wanted me to get on Paclitaxel because she thought I should do something more aggressive. My lung tumors would shrink a little and then grow a little on the targeted therapies. A woman in my support group was randomized to the oral taxol and she had a lot of stomach pain. She had to go to the ER and then dropped out of the trial. Maybe I actually lucked out on the randomization.
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- Cure-ious - I'm not eligible for the Alpelisib trial but it is on my list for when it goes on the market.
- SusaninSF - yes that is what my MO wanted too is something a little more aggressive for the liver mets. I think if I would have had the Alisertib with Fulvestrant right away it may have worked longer but who really knows. At least Alisertib got things to stable for awhile. For some reasons I would have preferred IV Taxol over oral. Don't know why really but maybe cause I think it has a bigger punch - with nothing really to base that on. So glad you got randomized to the IV one and hope you are doing well. Ports make things so much easier. I got a port put in on Tuesday and first round of Taxol. SE so far are flushed face, some muscle bone soreness, and my taste buds have gone bonkers - everything tastes terrible! I'm cutting pre-meds back by 1/2 next week.
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Ann, you said that you had PIK3CA and PIK3C2B mutations. You are the first person I have “met" with PIK3C2B, which showed up on my Foundation One report (2014) as well. (No PIK3CA mutation in my case.) Interesting we both have ILC with liver mets. Do you (or anyone else here) know anything at all about the PIK3C2B mutation? I have not had much luck finding information to help me understand or theorize what this mutation could mean for treatment strategy.
I did find something about PIK3C2B, which I can't access at the moment, called Gene cards or something, and it said something like increased viability with Tamoxifen (which failed me early stage), and decreased viability with gemcitabine (Gemzar). Perhaps this means if I have to pick a chemo out of a hat at some point, I should pick Gemzar? Or maybe I have no idea what I'm talking about!
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