Discussion Board Forums General Discussion 36 year old with CC update

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  • #97570
    middlesister1
    Moderator

    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

    #97569
    bglass
    Moderator

    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

    #97568
    kbyrnz
    Participant

    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.

    #96772
    middlesister1
    Moderator

    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

    #96770
    kbyrnz
    Participant

    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?!

    #96399
    bglass
    Moderator

    Billy,

    This is such positive news for Katherine.  Thank you for sharing it with us.

    Regards, Mary

    #96393
    vtkb
    Participant

    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.  .

    #95749
    mbachini
    Moderator

    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

    #95664
    vtkb
    Participant

    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

    • This reply was modified 3 years, 11 months ago by vtkb.
    • This reply was modified 3 years, 11 months ago by vtkb.
    #93616
    debnorcal
    Moderator

    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

    #93617
    mbachini
    Moderator

    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

    #93618
    vtkb
    Participant

    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

    #93635
    marions
    Moderator

    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

    #93634
    vtkb
    Participant

    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)?

    Thanks,
    Billy

    #93633
    bglass
    Moderator

    Hi Katherine,

    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, Mary

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