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Although I haven’t had to deal with this directly, I’m pretty sure in the US the process goes like this- patient asks doctor, doctor agrees its worth trying, doctor asks/petitions company (and may at the same time petition patient’s insurance), then the FDA has to grant approval if not already done for that drug. So the doctor has to contact the pharmaceutical company. The doctor may think it’s not worth the risk and if so that’s the end of the plan (before it ever gets to the pharm company or FDA). Also, in the US, most insurances will not cover experimental treatments, which include compassion use drugs. That’s why the doctor has to petition for insurance coverage also. A lot of pharmaceutical companies will provide some type of relief or vouchers though if they believe their drug may help you. If I remember correctly one patient here was able to get Keytruda for free after the first couple of infusions showed benefits. You can probably ask this same question on the cholangio warriors patient facebook page for a more detailed response from patients who have taken this route.
Catherine,
I am so sorry for your loss. Your mom’s story inspired many (including me and Kathy) to have hope beyond the initial grave diagnosis given to most. You have our deepest condolences
https://www.cancertreatmentsresearch.com/community/immunotherapy/dr-williams-clinic/ This had a patient perspective thread with a patient (meech) who had a similar cancer to cholangiocarcinoma. Not sure if reading the thread will give you the answers you seek.
There is a clinical trial now recruiting that wants to combine intratumoral chemo (cisplatin/vinblastine) and immunotherapy in some centers in the US- that may be an alternative to what you suggested with Dr. William’s Clinic.
Good luck in your journey
Im sorry to hear of your moms diagnosis. You didn’t mention where you are being treated, so I think the first step is to seek a second opinion at a major cancer center (MD Anderson, Sloan Kettering, etc) if you are not at one already. Browse the posts on these sites as much as you can tolerate to learn more about the disease and how people have handled it. Was your mom’s tumor biopsy sent for genetic testing? If not, push your onc to do it or have them send it to Foundation One- those results may open up a whole new set of treatment options for your mother. Good luck!
I have no experience with md anderson cooper, but if you live close enough to it you should also be close to Fox Chase, where some former members have been treated. We went there for a second opinion and liked the drs we met, but kathy stayed with mskcc as they offered the same things.
Karen,
Is the mass confined to your liver or has it spread to other parts of your body? If it is still only in the liver, go to one of the surgeons experienced with CC- the general surgeon at jefferson may not have been experienced enough for a resection but if you are a surgical candidate, you should seek out surgical opinions quickly. YOu may be able to send your scans to some surgeons to see if they will see you for a second opinion. Seek out one of the liver surgeons at Fox Chase in philadelphia, Johns Hopkins, and in NYC ->MSKCC (Dr. jarnagin), Mt sinai (Dr Schwartz) and Columbia (Dr. Kato). Worst case you have a second opinion which says surgery is not an option. Best case you get an experience surgeon giving you a better chance at beating this cancer.
Billy
Maryrita,
My wife has both PSC (found out at her liver resection) and ICC, as well as UC. She was diagnosed sept 2016. There are multiple posts on here to help people get started in fighting this disease, but the main/common themes are: Get copies of your scans. Get a good surgical resection opinion (although it depends on which lymph nodes are involved, where your tumor is etc, usually with lymph node involvement you wouldnt be a surgical candidate up front). Get a medical oncologist who treats this disease and also a second opinion – the first chemo they try is usually gem/cis. Ask to get your tumor and blood tested for genetics. Based on the genetic profile of your tumor there may be targeted therapies available or clinical trials that you can be eligible for. You’re likely in good hands at Mayo, but there are other major centers that are also good if you want second opinions- MD Anderson, MSKCC, etc. You may want to also join the cholangiocarcinoma warriors facebook page which is for patients only and ask some questions there as well as on this board. Good luck in your journey.
-Billy
Try this website: https://ccr.cancer.gov/Surgery-Branch
I believe the trial is still open, if you fit their criteria. Kathy was rejected (because she has UC) but we had originally reached out via email with her story and they got back to us in a timely manner. There should be a link on the website above with the clinical trials at NIH
Gavin, ondansetron(zofran) comes in sublingual forms as well- I think that’s the anti nausea med you were referring to.
Interesting. I know with other cancers (breast , ovarian) they have studied if there was any benefit to using propofol instead of inhalation agents during resection surgery but the results proved inconclusive. When Kathy had her surgery, Mt Sinai was part of a randomized clinical trial comparing the same thing. I must also warn though in the article above they mentioned cellular exposure to propofol for 24-72 hours- prolonged exposure to propofol in humans (especially over 48 hours) can lead to severe complications such as propofol infusion syndrome.
I’m not sure if they would do anything differently but when my wife was first diagnosed we went for a second opinion at Fox Chase near Philadelphia. There was another person who used to post here (unfortunately she passed away, I think) who switched her treatments from Sloan to Fox Chase if I remember correctly.
Thanks Mary,
Her oncologist is going to try to get compassion use for the PARP inhibitor as he strongly believes in it unlocking some benefit for Kathy, but I’m not sure which inhibitor or if we don’t get it how much it would cost to try it. I’ll update as we get more info.
Billy
We heard back from Kathy’s oncologist- unfortunately after he spoke with the Dr in charge of the clinical trial it was decided that Kathy cant participate in it due to her ulcerative colitis. I fear this will keep her out of any potential immunotherapy trials as they dont want to risk worsening the colitis although I have read anecdotal stories of people with UC getting benefit from immunotherapy in other cancers (such as melanoma) without worsening the UC. I wonder if any other cholangio pts have UC and were able to participate in these type of trials.
We met with kathy’s surgeon yesterday, and he was a little surprised that no PET scan was ordered, but went over kathy’s abdominal mri with us which showed nothing in the liver. The CT scan did now show multiple small nodules in both lungs, which sloan’s radiologist believes to be the metastasis that we were worried about last year (when she had her first lung nodule). There were no spine lesions on that scan though, so it seems like the cc decided to go to the skull + lymph node+ lungs. We are set to meet the radiation oncologist tomorrow for the skull, I wonder if they can also zap kathy’s lungs too or if that would cause too much damage to her lungs. In 2017 when Kathy had radiation and just one lung nodule it was too small to be considered for radiation, and we were told its likely nothing as long as it doesnt grow quickly. Her oncologist is away until the new year, and I do not want to wait that long for some type of systemic treatment- its annoying that we cant see other oncs at Sloan unless her onc requests it, which we are trying to have done. I know someone in the past mentioned having VATS instead of biopsies for lung mets, but I dont know if that was limited to one lobe or all over. I also think with the lymph node biopsied and the rest of her picture a biospy of the lung wont show anything new. I guess our year of treatment free is now over. Sometimes I wonder if maybe we had done chemo a little longer (we did 5 months preop, then off a month to prepare for surgery) if it would ve changed anything, or if the mets would’ve shown up earlier and then we wouldn’t have had the year treatment free that we were able to have. I also wonder if the meningitis which caused an interruption in radiation and a complete stop to chemo (xeloda, she was only able to take one dose of then stop bc it was felt to be too risky post meningitis) allowed whatever strangler cancer cell to survive last year. Sorry now I’m just venting. I’m also worried kathy’s PSC/Ulcerative colitis diagnosis will prevent her from joining some trials. Has anyone had RFA to lung mets?
happy holidays,
Billy
Thanks. Her brain MRI showed no brain mets (good), but we also found out the CT chest showed growth in the lung nodules they were monitoring and lymph nodes, but no mets in the liver itself. I’m guessing that means that these mets were from some cancer cells that were left over from before the surgery since there are none in the liver- I wonder if more chemo preop wouldve changed anything but I do remember we were very fearful of staying on chemo too long and letting a chance at resection become inoperable. Kathy did have gem/ox post op with radiation. We will meet with the radiation oncologist soon to plan her radiation but have no idea if chemo will be involved also, and if so which type since gem/cis worked well the first time, but who knows how these metastases will react now? Or should we just do the radiation alone and then go for a clinical trial? I don’t like waiting on treatment while we know the cancer is growing.
