September 15, 2017 at 4:30 am #93617mbachiniModerator
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.
MelindaSeptember 14, 2017 at 2:19 am #93618vtkbParticipant
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.
billyJuly 6, 2017 at 2:40 am #93635
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,
MarionJuly 5, 2017 at 8:55 pm #93634vtkbParticipant
Kathy just got back from meeting with the surgery team at Mt Sinai and getting her first post op Ct scan (3 months). Since her surgery her Ca 19-9 and alk phosph have been slowly creeping back up (CA 19-9 went from 23 post op –>47–>80’s) , and shes been on 6 rounds of adjuvant GEMOX. She’s hopefully starting radiation/xeloda soon although we dont have an exact date for it yet. The doctors also confirmed she has PSC.
Her Ct scan showed nothing in the lymph nodes or liver, and the surgeon seemed quite pleased. Her blood vessels in the liver also seem clear. She thinks radiating the surgical margins can help get rid of whatever microscopic disease is still lingering along with the chemo. However, there was a single 2 mm nodule that showed up in her right lung that wasn’t there before. She says we’ll watch it and scheduled Kathy’s next scan for October (MRi abdomen/CT chest). Can this be a met? If so, should we ask if they can radiate it during the IMRT treatments? I’m going to guess its too small to be biopsied at this point. Would it be weird for a met to show up with no other lesions showing (although one of her lymph nodes was positive when taken out)?
BillyJune 19, 2017 at 1:23 am #93633
It is great to hear you are doing so well.
You asked to hear about experiences with radiation. Here are some observations re my five weeks of IMRT radiation with capecitabine concurrently.
I need to preface this by saying that the center which treated me was wonderful in every way: efficient with caring, patient-oriented staff, top notch doctors and modern facilities. So my description below should not be viewed as in any way complaining about the provider.
I found radiation tougher than chemo. It is logistically different in nearly all aspects. Chemo was once a week with some weeks skipped. Radiation was every day. Chemo appointments were long, usually a couple of hours. Radiation was in and out within 30 minutes. Chemo was slow and nurturing: here is your recliner, have some tea, bring your family, do you want a magazine. Radiation was get down to business fast. Get in there, put on a robe, zapped and done.
The radiation made me tired but it sometimes felt like it was not the treatment, but rather getting myself there every day while I was holding down a job. For me, radiation treatment took some patience – I found the experience a little unnerving til I got used to it.
My treatment center had the patients change into gowns. I usually had one of the last appointments of the day, and the gowns left were either extra small or extra large. I opted for extra large, which made me feel I looked like the school nurse at Hogwarts.
The patients file in and out pretty fast as the treatments last maybe 10-15 minutes from start to finish. When you come in to the treatment room, you first lay on a table on a mold shaped to your body. The technicians move you around until the beams line up to the small tattoo dots that had been placed during the treatment planning session. Once you are in position, they leave the room, a large metal door clicks shut behind them, and they speak to you via speakers in the room.
Soft music played in the background. A large gantry with scanning and treatment functions rotates around you. It looks like a Star Wars weapon. The first step is a scan to be sure everything is lined up correctly, then the treatment itself which involves several passes by the rotating gantry.
In my case, I had to hold my breath during the treatments, which is something the technicians practiced with me until I could time my breathing as needed. I figured out some prayers that matched the timing of the breath holds, which made that aspect easier.
The technicians then tell you they are done, come back in, and help you off the table. At that point, you are finished, get redressed and head home. My abdomen felt warm after treatment and initially I would crave milkshakes and was hitting McDonalds on the way home.
Other than fatigue, which deepened over time and hung on for a few months after, I had a little bit of a reflux problem which responded well to over the counter treatment. No nausea. I generally felt fine during the treatment other than some hand-foot problems from the capecitabine. The radiation lowered my lymphocyte count quite a bit – if I recall correctly to a level considered an adverse event – but it bounced back to normal range within a few months. I was initially concerned about this, but the doctor pointed out that my lymphocytes had not stopped the cancer in the first place so their temporarily lower levels were not something to worry about.
The center where I was treated had a nutritionist on staff who recommended a high protein diet and plenty of water.
That is what I remember. The five weeks were tedious, but I got through it in good shape. It has been 13 months for me since I finished treatment, and I have no regrets.
Hope this is helpful.
Regards, MaryJune 9, 2017 at 3:47 am #93632
Katherine….so thrilled to hear from you. I have learned that following surgery the CA 19-9 can be all over the place hence you may very well be worried for no reason.
The new “normal” includes just what you describe. Some years ago the subject of “letting gas” in particular was a mainstay of our conversations, not sure why people don’t comment on it anymoe. Haveing said that, you may want to consider using enzymes prior your meal intake.
Personally I have not experienced radiation but many others have. I hope they will come forward and engage with you.
You are doing great, keep it up
MarionJune 9, 2017 at 2:24 am #93631kbyrnzParticipant
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.
KatherineApril 18, 2017 at 5:42 pm #93630
Mary…agree. Although we see a tremendous increase in research for our cancer much is still left to discover. Physicians make choices based on their personal experience as well as of studies of related diseases.
All research studies are statistically averaged out, hence there always are patients fairing extremely well. They way I look at it, someone always is on top of the scale, anyone of us can be that person.
MarionApril 18, 2017 at 4:46 pm #93629
In my case, my doctors recommended adapting the SWOG S0809 adjuvant treatment for me even though my CCA is intrahepatic. In the SWOG S0809 reporting, it is clearly stated that intrahepatic was excluded and in fact, there is a review of the study I saw praising it for not including all types of CCA.
The other (chemo-only) option I was offered is an adjuvant treatment used for pancreatic cancer that has a good study behind it. I don’t think there are many (or any) intrahepatic patients represented in the studies of adjuvant CCA treatments, or if so, the numbers are small. So doctors have to improvise!
Regards, MaryApril 18, 2017 at 4:21 pm #93628
Brigitte…..good luck tomorrow. Tons of good wishes are heading your way.
I am quite familiar with the study mentioned by Mary ( SWOG S0809 ) as it was approved during the time I served on the NCI Task Force for Hepatobiliary Cancer. It included extraheptic and gallbladder patients only. I believe you have intrahepatic disease, correct?
At this time we don’t know how qualified intrahepatic patients would fair with the same treatment protocol.
Tons of good wishes are heading your way for Monday’s scan to reveal stable disease.
MarionApril 18, 2017 at 1:58 pm #93627lainyMember
Hi, Brigitte, wanted to wish you the very best for next Monday. Just let the tech know that your family here will not accept anything but good news! Yep! If it would all be that easy, right? Sending you all good wishes, vibes and hugs for some great news!April 18, 2017 at 12:54 pm #93626bgmat48Participant
Hi, I had a resection in July 2015, they took the liver left lobe out and I had clean margins and no cancer anywhere else, however I now wish they had done chemo as after 6 months clear, 2 small lesions showed up on the rest of my liver. I now have been on chemo for 14 months, 6 months on Gemzar/Cisplatin and now on Gemzar only. The oncologist calls it maintenance chemo. The lesions have stayed small with minute increase in one of them. Having a scan next Monday so fingers crossed it will be okay. Wishing you all the very best.April 10, 2017 at 1:20 am #93625
How wonderful to hear you had a successful surgery!
You asked about similar experiences. In my case (intrahepatic), I had clear margins but close in one area (also 1mm) due to a vein. My lymph nodes had not looked concerning in the pre-surgery scans and were not sampled as part of the surgery. I was told later this was because the surgery was difficult and the surgeon was “concerned about morbidity.” The pathology report cited that the tumor was large, poorly differentiated and showed vascular invasion. But the tumor was cleanly removed and no signs of cancer spread, so the surgeon was happy with the result.
He did recommend, due to the bad pathology, that I pursue adjuvant treatment. I was referred to a radiation oncologist who felt that with the close margin and unknown lymph nodes (“we have to assume they may have cancer”) I should consider a protocol that had some success with extrahepatic patients, especially those with R1 margins or positive nodes. Below is the citation for the protocol. I had four cycles of gemcitabine and capecitabine followed by five weeks of IMRT radiation to the tumor bed and related lymph nodes, together with capecitabine.
I tolerated both fairly well. The capecitabine caused problems for my feet (hand-foot syndrome) that got pretty bad at the very end, but mostly cleared up later. Also, my lymphocytes dropped way low halfway through the radiation. They crawled back over the bottom limit of normal a couple of months after treatment ended.
I have been NED now for 17 months post-surgery and have my fingers tightly crossed this continues for a good while. If I had it to do over again, I would still choose this post-surgery treatment.
There is a debate (and not much clear evidence) over whether adjuvant treatment is worth doing. I didn’t understand why anyone would choose NOT to have adjuvant treatment until my lymphocyte level dropped, which gave me some insight regarding one potential risk, which is possible weakening of the immune system. Nevertheless, I personally wanted to feel I had pursued all avenues.
Best wishes for a continued good recovery.
Regards, MaryApril 10, 2017 at 12:10 am #93624kbyrnzParticipant
I 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.March 14, 2017 at 11:37 pm #93623middlesister1Moderator
I’m easing back into the board this evening and was so sorry that I didn’t see this sooner, but so thrilled to read about your upcoming surgery. Some are fortunate to be operated on right away, but you went through the hardships of chemo too.
The apprehension is real, but not sure if I would use the term insane. I can not pretend to understand the apprehension, but I can say that even as just a family member, I have been faced with my own mortality over the past few years- so actually maybe as the patient the term insane does make sense.
My love and hugs are with you for a successful surgery and a quick recovery,
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