36 year old with CC update
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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
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 years, 11 months ago by
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This reply was modified 5 years, 11 months ago by
Good morning,
What great news. Thank you for sharing- it gives hope to others. And, we love sharing in your happiness. You went through so much to get here, and we look forward to hearing the positive reports in the future-
Take care,
Catherine
Hi Katherine,
Thank you for posting an update, and kudos on continued good scans and that you continue to feel well.
I read back through your postings, and was reminded how aggressive your treatment plan has been. It is great to see the positive results so far.
Regards, Mary
I am approaching the two year anniversary of my diagnosis and thought I would post an update on my current status. (background info: diagnosed 9/2016, five months of chemo Gem/cis, liver resection, two months chemo Gem/ox, five weeks radiation) This past July, I had another round of scans. Abdominal and pelvic MRI as well as chest CT. I am happy to report that I continue to have no lesions, lymphadenopathy or ascites. The mild intrahepatic stricturing and dilation that is associated with my underlying PSC is unchanged from February. I see a hepatologist every six months and she says I am doing great. My oncologist still sees me for labs every three months and “just to see my face”. My next set of scans is scheduled for the end of November with my surgeon. I will probably continue with this schedule of appointments for a while. For now I feel good and continue to count my blessings while keeping everyone with this disease in my prayers.
Dear Katherine,
Happy surgiversary! Milestones can mean so much. One thing very different from when Mom was first DX in 2013 and her recurrence, is that the doctors are not giving her a dire prognosis. Our hope is to put it back into remission and enjoy living. Ideally, it stays under control long enough to give treatments options time to improve even more.
Best of luck- keep the good news coming,
Catherine
Well… 3/23/18 marked my one year “surgiversary” . I had my latest abdominal MRI on 2/28/18 and it continues to show no signs of cancer. My PSC has gotten a little worse though, as seen by mild intrahepatic structuring and dilation as well as generalized inflammation of the liver that was not seen in my MRI three months ago. My Ca-19 has been relatively stable but my liver enzyme labs have increased. My GI put me on Ursodiol because I have been feeling “itchy” for over a month now. My bilirubin values are still in the normal range. This past MRI was only of the abdomen with another scan scheduled in four months which will include the lungs too. I can’t believe that this time last year I was in the hospital recovering and would never have guessed what the year ahead would have in store. Looking back on all that I have been through I can honestly say that I now appreciate the small things. I don’t take time spent with friends or family for granted and I certainly don’t have time for petty disagreements that would have been a big deal before. I remain positive for the future and try not to worry about the “what ifs”. Who is to say that I can’t be one of the lucky ones that doesn’t have a recurrence, right?!
Just updating for the new year (Happy New Years) – no news has been good news so far for Katherine. Katherine finished radiation in October, and both her surgeon and med oncologist rejected continuing Xeloda for her since she’s has so much chemo (5 months preop, 3 months post op). They figure if the gem/cis preop and gem/ox post op didnt kill off the cancer cells, xeloda wouldnt do much more. Considering the meningitis episode happened while on radiation/xeloda, I can see the risk/benefit thinking of her doctors. In November kathy had another scan, and still nothing showed up in the liver! She still has the nodule in her lung but it remained unchanged. Her Ca 19-9 lowered to 20-60 since the end of treatment, but I’m not sure when her next check will be. Her med onc recommended a scan again in 6 months but we are listening to her surgeon and will have another scan in 2 months. She’s also back at work. It does feel a little weird to be in the 3 month/ no treatment/ just scans cycle now, considering for the past year and a half its been constant treatments, following labs, side effects, etc. .
I know that blood clots are a common issue with our patients. I also know several who have experienced them and have gone on to do clinical trials. Hoping Kathy is feeling better and the source of the fever taken care of…hugs and prayers headed your way!
Melinda
Another update- after coming home, and completing some more radiation sessions, kathy started having some more fevers, and low blood pressure at radiation so her rad onc sent her back to the hospital, where shes been for a week now. They found a dvt in her arm (which can cause fevers), so shes also on anticoagulation, and they removed her PICC line, but so far no real source of infection was found.. They are still searching for other causes of fever, I guess since she had such a serious infection beforehand. The dr’s did notice her monocytes are elevated, but looking back shes had elevated monocytes on her blood tests since being diagnosed, so I hope its not a sign of anything more sinister. Before this hospitalization her med onc confirmed no more xeloda, which I’m a little disappointed about but considering the meningitis I totally understand the decision, and her ID dr thinks she’s cleared from the meningitis. I worry that the dvt may prevent Kat from participating in clinical trials if she has to go that route in the future, although Mary did post (got deleted I guess) that someone else was able to do trials with blood clots in her history. I am a lil worried shes still not eating well at all though, I’m guessing its due to the combo of meningitis, radiation, and whatever is causing the fevers this time around.
-billy
Billy,
It’s tough enough dealing with CC, the complications you described make managing this disease so much harder. I’m glad to hear Kathy is feeling better.
Debbie
Billy,
Wow, what an ordeal Kathy has been through! I am so glad she is improving and out of the hospital. I can’t recall hearing of anyone having meningitis during treatment, but understandable it could happen with a weakened immune system. Sending all my best for continued healing. Thanks for posting the information so others can be aware.
Melinda
It’s been an interesting 2 months since my last post about Kathy’s course. In the middle of her radiation/xeloda treatments Kathy got meningitis, and is now home recovering from it. I wonder if I should start another thread to see if anyone else has had this complication during radiation or chemo.
After the scan in July, kathy was having a colitis attack, was started on lialda and uceris for it, and when they started radiation her platelet count had decreased to 23(thousand) so they held off on radiation for a little. the team was also worried about some questionable lymph nodes that we werent told about on the july ct scan. The platelets came back up on their own, and the team did a PET scan, which had equivocal uptake in the liver (value of 3) area, but none of the abdominal lymph nodes were positive. Therefore they continued with the radiation/xeloda. At about the 10th treatment (of 25), kathy felt a little feverish (100) and had sweats. After talking to the radiation onc team, it was considered to be a normal side effect from the radiation. She then had 2 more treatments (thursday and friday), but other than the low fever felt fine. We were told that unless the fever hit 102 or she was short of breath, that there was no need to go to the ER. Then that sunday (2 days after her last radiation) kathy went to work, and after work started to vomit and have a bad headache.
I brought kathy to the hospital, and over the course of the next 12 hours she basically became more lethargic until she became unresponsive and started seizing. It was discovered that she had meningitis from listeria, and she was started on the appropriate antibiotics and keppra (anti seizure med). Her body’s immune system was probably weak from the radiation and chemo which led to catching the listeria(which is normally caught from food). After a few days, she luckily started to get better, and miraculously there seems to be no brain damage or lasting neurological deficits. She spent a week in the ICU, was intubated for about 5 days, and then another week in the hospital before being able to come home. In the hospital her platelets dropped again (down to 3,000- she needed transfusions), but the hematologists think this was due to one of the antibiotics, and not a more serious bone marrow issue from the chemo. She had also started on Lialda and Uceris before the hospitalization, I wonder if that couldve played a role in the platelets being low. She’s now home and connected to a pump to give her antibiotics for the foreseeable future via a PICC that was placed. Shes still weaker than her baseline, and not eating well, but im hoping that will improve as the meningitis gets more under control (ive read it takes 3-6 weeks of antibiotics to clear).
Tomorrow we will see the radiation oncologist to see if we can proceed with the last 12-13 sessions of XRT. We will also meet with the medical oncologist to discuss if she will continue the xeloda Initially we were pushing for a full 6 month course (like the bilcap study) but with this recent course of events I doubt he will want her to continue on it.
Anyway, we were always told that the 3rd week of radiation is when your body starts to really feel it, so we thought initially that kathys symptoms were no big deal. I hope no one else ever gets this complication, but if you have a headache and a fever while on chemo, radiation or otherwise immunocompromised, get yourself checked out. Kathy was really lucky and a few more hours delay of treatment could’ve turned her meningitis prognosis much much worse.
billy
Billy…I would not worry to much about the lung nodule, it may just sit there and cause no problem. Wait and see is the general approach, as there is a chance it may disappear. I don’t know much about PSC, but wonder whether that is infuencing Kathy’s markers. Try to not worry too much (I know is tough to do) but she is in good hands with the physicians. Remember, we compare this cancer to that of a roller coaster ride and depending on the situation we learn to adjust along the way.
Hugs to you and Kathy,
Marion
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