Are you currently (or have you been) in a Clinical Trial?
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Good morning everyone. Thank you all for the support and caring. Any and all suggestions are gratefully welcome. The tricky part is that here, there just isn’t a ton of access to clinical trials. I did have a navigator look for options a couple of months ago but the list was short and most of the trials were either not applicable or no longer open. Ultimately it didn’t yield any results.
It’s a strange place to be at the moment, treading the gap between purely palliative care and dealing with what continues to be a slower growing cancer. I am certainly having to contend with multiple symptoms between the fluid retention, lung issues, etc. More recently I’ve developed a completely numb chin and some numbness/tingling in my hands that are likely related to advancing bone mets in my c-spine. Spoke to the radiation oncologist yesterday as a follow up to my earlier radiation to deal with left hip pain (worked like a charm) and she has ordered an urgent CT to see what’s up. Otherwise there are no regular assessments at the moment so I have a hard time knowing how I am doing overall (and to be honest, what that means in terms of longevity).
The funny thing is, despite the fact that it was a phone call, I came away from the conversation somewhat uplifted. The RO seemed to feel I am still doing very well and there is still plenty of runway to look at various treatments to keep my quality of life. With so many symptoms it’s been hard to feel that way much of the time so it was nice to hear. (While I am sure my liver numbers are out of whack - the last blood showed this beginning and my bowel movements are very pale affairs - it doesn’t help that the homecare nurses keep imagining that my eyes are showing signs of jaundice. I don’t agree - yet!) I think the takeaway is that I need to roll up my sleeves again to have another look at possible trials. While there isn’t much available in Canada things do change quickly so perhaps something has opened up.
Thanks again for your support. Thinking of you Nicole as you take this big step and wishing you great success.
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SS, Is it possible to consult with oncologists involved in trials to get any suggestions? And can you make a list of just which drugs you have already tried? I think you were uplifted because somebody was willing to step in and help you!! Often we imagine ourselves a just beyond help, its not hard to get that feeling sometimes
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I keep forgetting to put my long….. list of treatments back. I’ll fix that. I do need to tackle in update as I gave up when things went sideways with the site. Stay tuned.
In terms of an oncologist consult, the navigator seems to be the path here as that’s where my MO directed me. They recommended a group in Ontario but it unfortunately didn’t pan out. Second opinions and consultations are challenging in our system, particularly given the currently stretched resources. Not sure where things are at now but at one point they were triaging cancer patients. Fortunately that didn’t impact me but there were stories of people with advanced cancers who were basically told we can’t help you. A friend of a friend ultimately chose medically assisted death with advanced colon cancer when he couldn’t get treatment. Heart wrenching.
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Looks like the signature is back although there are still some weird entries and I've lost dates for some things. Essentially treatments are there though. To summarise, diagnosed with pleural effusion and bone mets in December 2016 then the following:
- Tried Taxol - no response
- Ibrance/Arimidex - couldn't tolerate Ibrance as it wiped out my red cells - Arimidex quickly failed
- Xeloda - MO likes to go back and forth between chemo and hormone but I wasn't sure of response
- Faslodex - got a good run on that but when it became available layered in Verzenio. That gave me about three years.
- Xeloda - Good response but MO did not want me on it full time. Took a break but progressed.
- Vinorelbine - No response
- Eribulin - No response
- Xeloda - Progression at this point
- Gemzar - No response. MO no longer recommending chemo as my indolent cancer does not respond.
- Exemestane - Currently taking this primarily to slow things down as the last scan showed stability in the liver and bones (don't believe this is the case now) but progression in the lungs. MO believes I am resistant to hormone based treatments which makes sense given response.
That's the Cole's notes version. 😊
Thanks!
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Novagirl…I too used Travera the sample was big enough to test 10 chemos against it. i used Iver 25mg 5 days on 2 off for 2 years. I suggest you dissolve it in 10ml of Vodka and heat it in microwave for 10 seconds then chase with grapefruit juice for maximum bioavailability.
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Nicole, thank you so much for the dosing help. I’m going to bring it up with my MO and hope he writes an rx.
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Hi Sadiesservant - I agree the clinical trial landscape is such a desert in Canada especially > 2 line and ER+. My cancer is also fairly indolent although it seems I've had better responses to some of the chemos, albeit brief.
My questions looking at your list:
Has your oncologist thought of retrying tamoxifen, but at a higher dose than what you had back in 2001? My Ottawa oncologist and I have discussed this, but he wanted me to try gemcitabine first, and I ended up trying this new trial instead.
The trial that I am in has a site in Seattle (NCT05262400). My trial site in Boston is letting me do my scans in Canada - which is a big cost savings for me. Also I had to start in Part 1 (weekly visits for 2 months) but I believe Part 2 is now open and is only monthly visits.
Are you low HER2+? You mention that your oncologist doesn't want to try any more chemo for you, but I now know of Canadians receiving Enhertu on a compassionate basis for low HER2+.
I feel like you have said in the past you do not have the pik3ca mutation. But if you do, this trial (NCT04589845, TAPISTRY) seems to be in B.C. and gives access to GDC-0077, the pik3ca inhibitor I tried.
I do hope that in the interim your RO can continue to help.
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Thanks newgardener,
No PIK3CA mutation unfortunately and I am HER2 zippo.
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Thanks SS…. I admit I am very nervous… but mostly…. about my liver making it to the surgery next week… yes its getting bad. I am nervous too about the cell extraction a huge BIG METAL needle in the bend of my arm for 6 hours and cannot move…have to pee in the bed pan etc… being the OCD person I am we already packed rubber gloves, spray rubbing alcohol, Alcohol wipes and clorox clean up…yup..I am spraying and wiping down any possible thing that my body might touch.
I have more news… so my oncologist and I have decided to go to Enhertu..I will start on the 30th after my surgery…. Can yall please pray I make it through all this and my liver stays in safe levels no signs of failure.
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nicolerod,
You wrote "i used Iver 25mg 5 days on 2 off for 2 years". Is this ivermectin? What benefit(s) did you gain related to your cancer? You're in my prayers.
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Yes Ivermectin…I don't now what benefits I gained except that I am still alive when no treatment has worked for me…everyone is different
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Big cancer vaccine result reported in Nature this week: After Moderna reported success with an mRNA directed at individual patients cancer (ie, the neoantigens expressed on the surface of their cancers, not found on normal tissues) in melanoma, BioNTech (which partners w/Pfizer for Covid vaccines) went after pancreatic cancer with their experimental cancer vaccine. As with the TILs therapy, the tumors were removed from early-stage pancreatic cancer patients and sent to Germany for DNA/RNA analysis to identify the neoantigens in the tumor, just like they will do in the TILs trial that NicoleRod is doing next week. Then they made individual vaccines for 16 patients and got them back in nine weeks time. The vaccine was administered along with Keytruda and the chemo regimen used for pancreatic cancers. RESULTs: Eight patients showed a T cell boost to the vaccine and all of them remain cancer-free at 18 months checkup time. The others at this point all had their cancer return, with a median of 13 months.
BioNTech says since the trial was done they now have reduced the time to vaccine production to under six weeks and are aiming to get it down to a four week wait. Truly amazing. They chose pancreatic because it comes back fast & furious, so would give them a fast read-out on whether their vaccine works. Also, pancreatic has far fewer mutations than melanomas, and consequently has fewer treatments, so is a real tough test case. Most pancreatic is only detected after metastasis, however new blood tests are coming along so that it can be detected at early stages in more people. Of course they are studying those non-responders, try to figure out why the vaccine did not work. Overall, another amazing mRNA cancer vaccine result.
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Although Ivermectin is generally considered safe for liver in the limited dosing that it traditionally was used for, its not clear its OK for liver if taken chronically.
Adverse side effects from taking Ivermectin, which occur 1-10% of the time with standard doses, include rapid
heart rate, swelling of face, swelling of feet, low blood pressure, dizziness, diarrhea, nausea, decreased white blood cell counts, and hepatitis.For those concerned about liver function, its best to take only essential drugs, keep well-hydrated. Interestingly, acetaminophen is one of the worst drugs for liver. Liver damage (cirrhosis) from alcohol, drugs, etc is known to promote metastasis of cancer cells into the liver…
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Sadiesservant, I'm not sure what I think of the new buttons on bco, but I hit care/heart on this one.
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I had no residual liver issues from the Ivermectin. As a matter of fact my IR recently commented that although I know have over 30 tumors in there my left lobe that has been treated with Y90 2 times and MA 1 time has regenerator rather well. I never had an issue with my liver numbers going up either. My MO also never had an issue with it. It should be pulsed anyway.
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Nicole, what prompted you to take ivermectin?
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just the research about it and cancer.
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I’m hoping to add it to Keytruda. We will see what my dr says
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Well I may not be able to make it into the trial…I have a skull met that never bothered me and all of a sudden its really painful….feels like I banged my head…..I messaged my oncologist I don't know what to do
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novagirl,
Thanks for the link to the article regarding Ivermectin and check point inhibitors. Please keep us updated re your doctor's decision about adding Ivermectin to Keytruda.
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Dear Nicole, how do you know it is a skull met?
Saulius
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Nicole, so sorry about the skull met. When do you start Enhurtu? That drug is so powerful it pulled me from the brink. I’m hopeful it will help with the skull met for you.
Weni, I will keep everyone posted on what my MO says.
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Cure-ious -
Thanks so much for the hopeful news about vaccines and all of the substantive information that you post. It's really helpful.
Nicole - Hope the skull met and your liver can be controlled enough for you to start the trial.
Eleanora
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Saulius.. they saw a skull met back in FEB on my brain MRI they told me /showed me where it was and that is exactly where I had the pain… its better today…strange thing… I took molecular iodine yesterday 1 tsp… and I now bone mets can be painful when they die off I wonder if that did something…it wasn't a headache it was a pain on the bony skull exactly where that met was… its not totally gone but mostly gone this morning.
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nicolerud,
Is the molecular iodine that you take prescribed by one of your cancer doctors or do you take it based on your own independent decision?
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Wen… I take it on my own…
Skull met hurting again…. ughhh and I havent taken the iodine today at all…
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novagirl, so interesting about the ivermectin! Keep us posted!
nicole, I hope you can do the trial!
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I was in the ER last night MRI..my skull met has grown and penerated the area between the skull and brain… I am not getting the cell extraction at NIH tomorrow but should still be ok to get the liver surgery Wed then we will do the cell blood extraction the following week. I definitely need this thing radiated it HURTS… :(
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Oh @nicolerod, that sounds awful. Keep us updated. 😔❤️
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Dear Nicole… mmm… what does your MO say, what are the options for the pain relief? Hugs,
Saulius
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