Are you currently (or have you been) in a Clinical Trial?

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.

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.

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.

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.

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.

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

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…

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.

just the research about it and cancer.

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

Dear Nicole, how do you know it is a skull met?

Saulius

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

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?

novagirl, so interesting about the ivermectin! Keep us posted!

nicole, I hope you can do the trial!