kbyrnz
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Update from my last post in March 2021. As VTKB mentioned, in between the mapping for radiation to a cerebellar met and the actual treatment, I tested positive for breakthrough COVID-19. I am convinced that the only reason I had very mild symptoms was because I had been fully vaccinated already for a month at that point. After home-quarentine and the antibody infusion, I successfully completed a one time radiation dose to the brain. What my doctors and I find very coincidental is that the next week I developed a pretty bad case of ascites and had to have approx. 5L of fluids drained from my abdomen. I was placed on a diuretic and it has not returned. My hepatologist stated that she has seen liver changes post-COVID but more so with her liver transplant patients. I continued with Folfiri through July 2021 when my next set of quarterly scans showed a mets on T6 and L3 vertebrae. We decided to radiate T6 since it had grown in the three months since my previous MRI despite having no symptoms. We decided to hold off on radiating L3 since I had no symptoms in that area either and the met was not near the spinal cord, only in the vertebral bone. I normally tolerate radiation very well but this time I had the “pain flair” a few days after treatment as well as horrible heart burn. When these new mets were discovered, I had the conversation with my oncologist that the Folfiri was keeping my lung mets stable however it wasn’t preventing new bone mets to my spine. Folfiri, for me, was tough to tolerate and having been on chemo of some sort since 2018, my liver (according to labs) was getting “tired”. We decided to look into a clinical trial at MSKCC for the drug RP-3500 (an ATR inhibitor). The trial Doctor thinks I am a good candidate for it and someone who presents with mutations close to mine has been having good results. The first week of the trial involved a lung biopsy which was uncomfortable since I was still experiencing the pain flair from radiation. Twice that first week involved 10-hour days of repeated EKGs and blood draws. When I went back for week two, I had very low WBC counts and low platelets as well. We had to hold the drug. The same thing happened for week three. I looked back at labs that I had after previous radiation treatments and my platelets always dropped significantly but not so much for the WBCs. Looking back I think I should have given myself more time in between radiation and starting the trial. I don’t want to be thrown off before I practically even get started. That is where I am currently. I am waiting to see what next weeks labs look like before we decide what to do. It has been about a month since I had radiation to my spine but even longer since I had any sort of chemo and in the back of my mind I fear that there will be growth somewhere. Oh… and now I am having low back pain which I am attributing to the L3 met. UUGH, I hope everything falls into place soon. Thanks for listening. -Katherine
Update from my last post in Nov 2020. I continue on Folfiri every other week and I feel that it is more harsh than the gem/ox was. I definitely have more fatigue and nausea on this regimen. I ended up receiving radiation treatments to my T10-T12 vertebrae in mid December because even though I was having no symptoms, there was evidence that some epidural encroachment had begun and it was better to radiate then as opposed to waiting. I tolerated it well. My next set of quarterly scans in early Feb showed no progression in the lungs and that the spine mets were calcified over and the epidural encroachment had completely resolved. The CT of my lungs did show that an already known pleural effusion had grown and my oncologist recommended having it drained. I had 0.7L drained from my right lung in mid February which thankfully showed no cancer cells in the fluid. My doctors think it might be the result of low albumin levels in my blood either from chemo or just from cancer in general. The MRI of my brain showed a new .4cm met in my cerebellum. Almost exactly a year ago I had a .5cm met in my cerebellum which was successfully radiated so that is the plan for this new discovery as well. I already had the simulation and a more detailed brain MRI with the plan of receiving one radiation treatment next week. I have no symptoms from this brain met and hopefully will have as good an outcome as the previous one. I am still on blood thinners for my history of DVTs but I was changed to Xarelto instead of lovenox which is a little easier to manage. Surprisingly enough, even though I find Folfiri more difficult to tolerate, it doesn’t seem to have as much of an impact on my blood counts as the gem/ox did. My WBCs are pretty steady, as is my bilirubin, my platelets and my ALK-PHOS. They are all on the low side of normal but have never dipped into an unsafe range. Now if I could only get my albumin to do the same. I am trying to raise it with diet but may need an albumin infusion sometime in the future. March 23 is my four year surgiversary where I had most of my right liver resected. Knock on wood, my liver has remained “healthy” through all of these episodes of metastatic spread so I am happy about that. I just keep on plugging along and deal with new things as they pop up. I continue to look at clinical trails for my ATM mutation but a lot of them exclude patients with brain mets or with auto-immune diseases (I have UC and PSC). Hopefully I will find something one day because life-long chemo does not sound appealing. Thanks for listening. Any input is always welcome.
-Katherine
Sept 29 2020 was my 4 year “diagnosaversary” of ICC. Since the latest post back in March, there have been some changes to my journey. I am still on lovenox for the blood clot and was told that I most likely will be until a year after I finish chemotherapy (which currently has no end date in sight). In July, I had 5 treatments of radiation to my L1 vertebrae because a scan showed that it had grown and it was giving me considerable discomfort both at rest and with any sort of movement in the low back. Fortunately, the pain has disappeared after the radiation with minimal side effects (mostly acid reflux). In mid-August, I had my scheduled quarterly chest, abdomen and pelvic CT scans which showed growth in the lung mets. (Currently all of my disease is in the lungs and spine, my liver is clear). Everything is still pretty small however some mets had doubled in size (from 0.3cm to 0.6cm or from 0.5 cm to 0.9cm). My oncologist and I decided to switch it up a little since I have been on gem/ox for over a year. (I have the ATM mutation which responds well to platin drugs which is why they think I have tolerated it so well and for so long). I started Folfiri at the end of August and have had 5 treatments so far. After 2 treatments, I had my regularly scheduled brain/skull and spine MRIs. They showed progression in the spine, now with mets in T10, T11 and T12 in addition to the one in L1 that had been successfully radiated. My radiation oncologist thinks it was too soon after the start of Folfiri to say that it it wasn’t working and we are waiting until my next set of scans to see what to do about these new spinal mets. So far I have no pain from them at all. I should have new scans sometime in November.
I am still a patient at MSKCC but I keep in contact with Dr. Javle at MDAnderson as a sort of second opinion. He agrees with the reason behind switching from gem/ox to Folfiri. He mentioned if the Folfiri isn’t working I could also look into a PARP inhibitor trial, an ATR inhibitor with or without immunotherapy or specifically TC-210 trial which is both at MDAnderson and at MSKCC.
I would appreciate any input from others in a similar situation. What else have you tried after traditional chemo gem/ox or gem/cis or Folfiri/Folfox? Has anyone been in the Yeliva trials? Unfortunately my ulcerative colitis (which is controlled) is preventing me from being accepted to many trials (especially the immunotherapy ones), even though my gastroenterologist doesn’t think it should be a problem.
Thanks, Katherine
Since my last update on this discussion board in June 2019, there haven’t been many changes in my condition until recently. I am still on systemic chemotherapy of gem/ox every 3 weeks in order for my WBC and platelet levels to have enough time to recover and return to a value that I am able to receive treatment. I sill have multiple mets to my lungs as well as in the bone of my L1 vertebrae (which we had decided to hold off on radiating because it gives me no pain). Last months routine scans showed that the lung mets have increased in size but only by 1-3mm and none of them are currently over 1 cm in size. Unfortunately, a new 2mm lesion was noticed on my cerebellum. My oncologist and radiation oncologist put on a very optimistic face, both stating that it is very small and can be treated with radiation. Both doctors suggested that we wait on the radiation and re-scan in 2 months to see if it grows. They said ultimately, it is my decision on how to proceed. I know the possible side effects of radiation to the brain are not pretty but at this small a size I prefer to zap it now as opposed to gambling that it will not grow or spread. I have also asked about initiating radiation to the vertebrae for the same reason.
Last week I had a meeting with a doctor at Columbia hospital in NYC to discuss potential clinical trials. I have the ATM mutation. There is one specifically that I had read about that injects chemotherapy directly into tumor cells which would hopefully then turn on the body’s immune response to systemically attack other cancerous tumors. Right now I would not qualify because they do not inject into bone and the tumor has to be at least over 1 cm in size. Before knowing about the brain met, the dr said I would qualify once my lung mets grew to over 1 cm. But, brain mets are an exclusionary criteria unless stable.
Has anyone had a situation similar to my current one? I know brain mets are considered uncommon, however I have met several people with cholangio with spread to the brain.
Thanks for any input.
Katherine
I haven’t written on this page in a very long time so I will update my story from December when Billy posted that we had just learned about my recurrence. I had 5 radiation treatments to my skull and tolerated it pretty well. The radiation oncologist and I decided that the bone mets to my lumbar spine would continue to be monitored and we wouldn’t pursue radiation to that area since I had no pain, there were no neurological symptoms and there is a risk of compression fractures with radiation to the vertebrae. Thankfully, my headaches resolved after the radiation to the skull. When radiation was completed, I was put back on Gem/Ox. I have the ATM mutation and it seems to respond well to the platin drugs. I have completed 5 months of this cocktail. My latest scans show stability. There are still no lesions in the liver but the lung nodules remain present. The metastasis in the vertebrae seem to be improving. I went for a second opinion at MD Anderson with Dr. Javle in April and he agrees with my current course of treatment. He agrees with my MSKCC oncologist that immunotherapy is not recommended due to my UC and PSC and it would be too dangerous to risk infection if I were to have a flair-up of those diseases. There may be a possibility in the future of incorporating abraxane to my chemotherapy drugs. Has anyone had trouble getting abraxane covered by their insurance? I have my next set of scans for the entire spine to monitor any progression of the mets to my spine at the end of June, thankfully I have no pain.
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.
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?!
I am currently about 12 weeks s/p right liver resection. I took 8 weeks off from work and was able to return full duty (I am a physical therapist) without any difficulty. I resumed chemotherapy a month after my surgery due to a positive lymph node and only 1mm clean margins. I was switched to gem/oxaliplatin because the cisplatin was resulting in considerable hearing loss. I seem to be handling this new cocktail of drugs with less fatigue but that could also be because I receive treatments only every other week instead of two weeks on/ one week off. This past monday was my 4th treatment. I am feeling pretty good and getting used to what a “new normal” feels like but I have to admit sometimes the weird noises, sensations or abdominal distension cause my mind to wonder. I was so happy when my CA-19 came back at 23 after my resection and this past week it was up in the 40s. ( Not freaking out yet, I’ll wait for the results of my first scan which is scheduled for July) I also have had to have 2 neulasta injections due to low WBC counts.
My oncologist initially told me that I would have 2-3 months of post-op chemo followed by radiation which is what brings me back here. How did anyone respond to the radiation? Is it easier/more difficult than chemo? Did you switch to an oral form of chemo while on radiation or have it included with the traditional form? My oncologist hinted that I would. As usual, all tips are greatly appreciated and I am so grateful for this site.
KatherineI am currently 2 1/2 weeks s/p right liver resection. They also removed my gallbladder, part of my omentum and 2 lymph nodes. I was told by the surgeons that the HIPEC procedure was not done because my peritoneal cavity looked disease free when they were searching for signs of additional disease. My surgeon said that my remaining liver looked healthy, however there are signs of PSC. When I went for my first follow-up visit my surgeon stated that one of the two lymph nodes that were removed tested positive for cancer cells and he was able to obtain clear margins, the closest was 1mm. He said that if it were up to him he would resume chemotherapy and possibly even radiation as a preventative measure for recurrence. I have already completed 5 months of chemotherapy prior to surgery. The cancer had invaded my blood vessels too but my doctor thinks he got it all.
Has anyone had a similar experience to this? I have heard that there is no proof that additional post-op chemo reduces likelihood of recurrence but I think it can’t hurt to have a systemic defense for this scary disease.Surgery scheduled!!
Two weeks ago I had my second abdominal/pelvic/chest CT scan after completing 5 months of Gem/Cis. I am thankful to report that my tumor has continued to shrink (a decrease in size of 30% since diagnosis), my abdominal lymph involvement could not be seen on the current CT scan and my CA 19-9 (which has been an good indicator for me) has decreased from 17,000 at diagnosis to 1,700 after three months of chemo to 112 two weeks ago. I met with my surgeon (Dr. Schwartz at Mt Sinai hospital in NYC) and we are “go-ahead” with a surgery date…. 3/23/17. Dr. Schwatrz says that the tumor shrank in such a way that it shrank pulling away from ducts and major blood vessels making getting clean margins more likely. I am still also scheduled for the HIPEC (hiperthermic intra- peritoneal chemo) to be performed while I am still in the operating room. I have stopped chemo until then to optimize healing post resection and am feeling pretty good. The cumulative effects of the chemo was kicking my butt fatigue wise. I must admit that at the time of diagnosis this is the best result I could have asked for and I am very thankful for that, but the anxiety I currently feel about the actual operation is insane. I have daily crying spells thinking about my own mortality. Does anyone else have experiences like this? Dr Schwartz says the operation should last about 5 hours and I should be in the hospital for about 5 days. How long did it take before those who had a resection felt like they were “back on their feet” and able to get around their house with ease? I am a physical therapist in a rehabilitation center…constantly transferring patients in and out of their bed/wheelchair so I know it will be a while before I am cleared to go back to work.
Any tips or suggestions that you have are greatly appreciated.Today I met with the surgical oncologist who would be performing the HIPEC procedure during my resection. She made a lot of good points as to why I would be a good candidate for this additional procedure which is to use the localized chemo to hopefully kill any cancer cells found in my peritoneal cavity. I have already received 3 months of chemotherapy and the surgeons are still saying that my surgery would only take place after I finish the 6 month course to make sure that the cancer is still responding well to the chemo. They say that the tumor already in my liver is not my enemy.. it is the free floating cancer cells in my system that are looking for a place to settle down and grow…which is what the chemo is supposed to be taking care of. The only apprehension that I have is the waiting until April/May to have this surgery performed. If the surgeon that I am using for a second opinion proposes surgery before that (and not performing the HIPEC procedure) I don’t know which direction I would pursue.
Hi Red,
I also just finished my fourth cycle of gem/cis. A few weeks ago I started to notice an occasional (maybe a few times a day) high pitched ringing in my ears. Recently in addition to the ringing I have noticed hearing loss. It is harder to hear people in a crowded room with a lot of background noise and everything just seems sort of muffled. My Dr. didn’t seem to concerned when I told him about the ringing. Just thought I would let you know that I have been having the same side effect as your husband.
-Katherine( I just posted this on the surgery, resections and treatment options thread, curious to see what people think about this topic)
I just completed six treatment sessions of chemotherapy (gem/cis). On my first follow-up Ct scan I am happy to report that there has been shrinkage with my intrahepatic tumor as well as the surrounding lymph node involvement. This afternoon I heard from my surgeon about his next plan of action. He told me that since my tumors seem to responding well to the chemo, he wants me to continue with chemo for a total of 6 months at which point he will perform a resection as well as a procedure called HIPEC where “heated chemotherapy solution is pumped through your abdomen for 2 hours. This is performed at the same time as the resection” He says that with the removal of all detectable tumors and HIPEC there is now hope for long-term survival. I have to admit that I was slightly disappointed with his plan. I was hoping for surgery ASAP. I know that CC is an aggressive cancer and I keep fearing metastatic growth. Has anyone had this HIPEC procedure? How long have your surgeons wanted to wait to perform your resections while continuing on chemo? When I first sought out opinions when diagnosed I was told by 3 surgeons that I was a surgical candidate but they want to try chemo first. What worries me is the “most aggressive” surgeon is the one suggesting this course of action which involves waiting a total of 6 months before resection. Im assuming the HIPEC is to take care of my lymph nodes in my abdomen that were swollen on initial scan and have now shrunk.
Thanks,
KatherineHi Danielle,
I have been doing pretty well on the gem/cis. I just had my 6th appointment of chemo today ( 2 weeks of chemo and one week off) and with the steroids, anti-nausea meds and fluids , I haven’t had really any side effects besides for bad fatigue the day after and a little bit of discomfort in the blood vessels in my arms that they are using for the chemo itself, but since you have a port you won’t have this problem. Chemos #1 and #2 were pretty uneventful but I started noticing hair loss after #3. I have thin hair to begin with so I have noticed a significant loss…I bought a wig.
One thing that I can recommend is to rest when you need to. The day after Chemo I need to go to bed as early as 7:00 on some weeks. Accept as much help from family/friends to make your life easier. I had a family member make a bunch of meals that she froze so when I get home I don’t have to make dinner. Since I usually don’t feel like eating in the morning I have found that an ensure/boost/carnation instant breakfast is an easy way to in calories and hydration.
I have an appointment for a second CT scan next week to see if the chemo has shrunk my tumor and the satellite tumors in my liver to hopefully schedule my resection in the near future. Have you gotten a second opinion? Even my oncologist has said that some surgeons are more aggressive than others. Wish you well!
Katherine
