vtkb
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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
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This reply was modified 3 months, 1 week ago by
vtkb.
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.
Thanks for your reply to this and the other thread Mary,
I’ve been searching clinical trials.gov and in addition to this trial (which is done at sloan and mt sinai, systems kathy knows well), I see there is one for niraparib at University of Florida. That one includes multiple genetic defects (including ATM) but excludes BRCA pts. Unfortunately for Kathy, we learned about her skull metastasis so I’m not sure any of these would allow concurrent radiation. I was hoping Kathy’s oncologist at sloan would sidebar/consult Dr. Aboualfa or Dr Harding at MSKCC as it seems they head a lot of Sloan’s trials but no luck so far. I’m debating asking them directly for a second opinion but being within the same health system I dont want to ruffle any feathers. We also want something to get started that can happen with the radiation since there are still other cancer cells lurking in her.
Unfortunately we got news today that Kathy’s cancer has recurred. In October we noticed that she had a palpable left supraclavicular node and told her oncologist who then sent kathy for labs. Her Ca 19-9 was in the normal range for her and she was experiencing a cold so they didnt feel that it was anything worrisome. She then had an ear infection so we kind of brushed it off as likely due to that since kathy was feeling ok and her liver labs werent rising. It stayed the same size though so eventually kathy had an ultrasound which then led to a biopsy last week along with her abdominal and chest scans. The biopsy came back as positive for cholangio. The weird thing is I asked if they were going to send the lymph node biopsy for genetic testing and her oncologist said no, bc he knows kathy has the ATM mutation in every cell of her body. Should I push to have the biopsy genetically tested as well? Shes also been having a bad headache the past two weeks that hasnt gone away, but they held off on a scan of her brain until today so we are not sure what the cause of the headache is. we are also waiting for the official read of her scans and will see her surgeon in 2 days who usually goes over the scans with us.
Her onc thinks she can either try the chemo again since it was working before her surgery, or she may be a candidate for a Clinical Trial at Sloan trying out two drugs in combination (avelumab and talazoparib) because she has the ATM mutation in all her body cells. Has anyone used these drugs or know of anyone who has? Its a phase 2 trial targeting pts with BRCA or ATM mutations. We will have to wait to see if kathy is eligible for the trials, but I wonder if its better to start chemo again to get something fighting the disease while we research the trials more, or if its better to just start trying to get into any trial that will take her. I know if the cancer progresses then there will need to be a washout period for any trials to start. Has anyone had any long term success with just continued chemo indefinitely? I feel like I’ve read it in the past but cant find the posts now. I’m also worried about the headache and if its something more sinister, but hope not. Thinking back the only potential things on past scans were lung nodules that were small and stable and non specific. I’ll also have to wait and see what her surgeon thinks as well. Any ideas are appreciated, and thank you all.
– update- kathys headache was still bad after seeing the onc so she checked into sloans urgent care. The dr there told her that they saw likely skull mets which is probably what is causing her headaches. I always thought skull/bone mets was rare for icc, but it seems like any rare thing that can happen has happened. Kathy stayed overnight, and this morning we found out that the 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 . Now the question is do we try chemo again with the radiation for the skull, 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 and then go for a clinical trial? I dont like waiting while we know the cancer is growing.
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This reply was modified 5 months, 1 week ago by
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This reply was modified 5 months, 1 week ago by
It may not seem like it now, but its amazing that it was caught so early and it seems you are in good hands. My wife also has PSC that was diagnosed once she had CC, but the CC was advanced well beyond the transplant stage. You can read her posts under “36 yr old with CC”. Have your wife join the facebook group for patients when shes ready, that’s where kathy (my wife) seems to get the most support/help from. I tend to lurk on here more.
Elena,
So sorry to hear of your brothers diagnosis. I would advise your brother to also seek out the cholangiocarcinoma warriors facebook page, as many current patients are on there and discuss their treatments. They can share their experiences with him. After my wife’s surgery, there was a positive lymph node so she was advised by both her surgeon and oncologist (onc is at sloan kettering, surgeon is not) to do radiation post op after a course of chemo. Recent studies (bilcap) also suggest that xeloda with radiation post op offers better results, but I dont think that was compared to gem/cis directly (someone please correct me if I am wrong). Kathy’s oncologist wanted her on gem/ox first as the Bilcap study had just posted results around the same time, so it was new to the field. A second opinion will never hurt. As for clinical trials, yes some pts have gone on them after surgery- going to a major cancer center that deals with cholangiocarcinoma , like sloan, mayo, etc may open up more opportunities know about those studies, as does searching clinicaltrials.gov.
Good luck!
-billy
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This reply was modified 3 months, 1 week ago by
