Search Results for '5fu'

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  • #90791
    sherri
    Member

    Kris,
    Sorry to read that you have to fight again but you sound strong and positive so I beleive you will fight it off again.

    I saw where your doctor was check on other medicine to go with 5fu. I go to MDA for treatment and my doctor had me on Leucovorin, Irinotecan (camptosar) and I wore a pump for 46 hrs with 5-fluorouracil (adrucil). I haven’t read of this combination so I don’t know if it is something you have tried before. The first 6 cycles took my CA-19 from 7227 to 2398. The second 6 cycles everything stayed the same so they have me on maintenance with xeloda right now. My dr at Anderson is Dr. Shroff if you are interested in this combination.

    Best of luck and I’ll send prayers and good thoughts your way.
    Sherri

    #11941
    kris00j
    Spectator

    Well, here I am again in the patient role. I really enjoyed the 2-1/2 years of being a pill popping chronic illness patient. Now to get back to fighting again.
    The last ct scan showed new growth in lymph nodes and indeterminate “lights” that are too small to guess at. So the work begins.
    First, I am off the clinical trial. I did post that part on my clinical trial section.
    In the past 24 hours I was given the bad news, met with my radiologist, received calls from my onc today about trials, scheduled an ekg for tomorrow, a pet scan for Friday, and a biopsy for Christmas Eve morning! I’m tired! I forgot how much time this takes. And I start a new job tomorrow afternoon. First day on the job… Oh, I’m sorry, I need some time off… Great timing, huh?
    On top of that, I’ve been overwhelmed with a good friend on hospice. I’ve been fighting a cold so haven’t seen her the past few days, but she’s fading fast.
    And my mom was just put on hospice in Alabama, too far for me to help. And I won’t be there at Christmas because of my new health issues and the new job. I told God that his timing sucks.
    I’ve spent most of the day on the phone setting up appts. and need to get my calendar book up and running again, I guess.
    I still feel fine, and at least I get to look forward to finding my ankles again! And losing the puffy eye look. Such an attractive look!
    We are looking into trials or radiation first. Gem/Cis will be the next option. Gem/ox is my last choice because I still have a bit of neuropathy so I figure I won’t handle too many infusions. Dr. Denlinger is looking at 5fu paired with other drugs. We’ll see what she comes up with. She’s also reaching out to MSKCC and Georgetown for suggestions.
    That’s all for now. My big girl panties are on and I’m lacing up the gloves.

    #79291
    kris00j
    Spectator

    We knew this day would probably come, but it’s still a shock. I am no longer in the clinical trial.
    Disease progression to two new lymph nodes. Possible progression elsewhere, but ct scan is not definitive. The plan is to get a biopsy of the new area to see what kind of mutations have occurred. This is #3. Also to get a pet scan to see whether the little lights are cancerous or not. Hopefully they can figure that out. If the little lights are from the cold I’m dealing with or something else, then I have the option of radiation again. It takes 4-6 weeks to get the genomic testing done. If radiation is not an option, I’m praying the mutations would still allow me to try to get on keytruda. If not, we look elsewhere. Either a trial, or (and I said this would be my last choice) gem/Ox with 5fu. Oxaliplatin kicked my butt the last time so we know I can only get about 3 rounds before I have to stop.
    That’s it. As you can guess, I’m pretty much a mess, but determined to put my big girl panties on again. Time to become a cancer patient again. Ugh!

    #71263
    esamolytz
    Spectator

    Hi all. It’s been a long time since my last post. I did one cycle of 5FU after surgery, but it was toxic so we discontinued treatment. I had slight thickening of the peritoneum, so my onc ordered a PET scan for 10/29. I got the results on 11/4 … everything is normal and I am doing great. My labs were mostly normal too, even the tumor markers. Hemoglobin and platelets are still recovering but looking better. Best news ever came in the form of two simple words: complete remission! My onc said we need to remain careful but that everything looks great. Here’s hoping for this to last a long time!
    Elaine

    #89838
    tiah
    Member

    Thanks ladies. I will be going with her this afternoon to get her disconnect from her 5FU infusion (she has to carry around a bottle for 2 days). I don’t think we plan on seeing the Dr today but as soon as I can go to an appointment to see him I will ask him about the choice of chemotherapy. Also, considering how well she is coping with the chemotherapy I was wondering if radiation therapy would have much benefit, or would the toxicity risk be too high. I will discuss this with him also and then keep you posted.

    #11740
    tiah
    Member

    Hi guys, I’ve been reading on these forums the last couple of weeks but finally decided to join and post about my mother.

    Last month, August 2015, a general check up at her GP found some mildly elevated LFT’s, so an ultrasound was ordered. After an ultrasound, she had an immediate CT scan which discovered an approximate 9cm mass located within the liver. Otherwise she was completely asymptomatic. She had an MRI and then was referred to a HPB surgeon, and then had a biopsy on a nearby lymph node approx 2.5cm, which returned negative for cancer. CT on lungs showed lungs were clear. The surgeon ordered a biopsy of the liver, and then were referred to an oncologist. He explained that although there is no portal vein invasion, it is currently inoperable to the the closeness to a vein (I can’t recall which one), however his aim is to shrink the tumor and then go for a liver resection. He seems confident he can do this provided the tumor shrinkage. At this stage we did not even know what type of cancer she had (so we assumed it was just liver cancer).

    Once we saw the oncologist (early Sep 2015), we were told the diagnosis was cholangiocarcinoma. He wasn’t very positive when we saw him, stated it was pretty advanced (although clear lungs, no mets, negative lymph node biopsy), however he said theres some abnormal looking lymph node(s) nearby. He decided because she is young, fit and healthy to start her on FOLFIRINOX (oxaliplatin, irinotecan, folinic acid and 5FU). I’m not sure why he decided on this over gem/cis, which seems to be the first line treatment. I have not been able to personally ask him this. She had a port insertion in the clavicle area, and receives treatment every 14 days. She is currently on day 2 of the second cycle and is handling it quite well, minimal side effects including occasional diarrhoea, some pins and needles on the first 3 days of cycle. The oncologist explained that there’s a 50% chance she will respond to the chemotherapy – so we are trying to stay positive.

    I’m very grateful because she has amazing family around her at this difficult time. I’m also very proud of her for the way she has handled it, through the ups and downs, the tears and the strength and courage she has had, and how positive she is remaining now that she has started the chemo. Up until starting the chemo she was very scared and emotional, but know she feels she is soldiering through it. I feel bad for my dad, him and my mum have been together since they were 16 years old, and he lost his mother to brain cancer at 15 years old. My boyfriends father was diagnosed with oesophageal cancer one year ago, and although he has had successful treatment and surgery and is currently cancer free, I don’t think even that prepared me for my own mother’s diagnosis. I work in the healthcare field (pharmacist), so I’m very grateful to have a greater understanding of many aspects of the cancer journey, particularly in regards to medications and medical terminology.

    I would love to hear from anyone in Australia who is going through a similar journey. Also, anyone who has had experience with FOLFIRINOX in cholangiocarcinoma. We are hopeful that if folfironix fails, we might be able to access a trial medication or possibly have access to some funds for a medication like Pembrolizumab, however we would look into tumor profiling before going down this avenue.

    Thanks again for reading, and nice to meet you all!

    #11626
    mizzey100
    Spectator

    Hi There
    Went to Oxford today to see oncologist who was talking about an option for Kim to do a clinical trial
    A trial looking at oxaliplatin and 5FU for advanced biliary tract cancers (ABC-06)
    http://www.cancerresearchuk.org/about-c … cers-abc06
    I also discussed the possibility of sirt and they are going to review again but because of ascites and her resection she might not be eligible. Without treatment a prognosis was given of about 6 months and they cant guarantee whether she will get the chemo option on the trial. Can anyone else shed some light on the trial proposed? Is this something that has been offered in the US? Kim is Stage 4 now and her liver has about 7 grape sizes nodules/tumours? . She also has lymph node involvement around the abdomen and ascites.
    Bitter sweet day as her daughter had a GCSE results today which were fantastic.
    Love to hear of anyone in a similar situation or been through these options themselves x

    gregf
    Member

    Hello all
    After many months of having elevated liver enzymes I was diagnosed on April 2nd 2014 with extrahepatic hilar CC. I was told it was an early detection and I was eligible for the liver resection surgery. After getting a second opinion from Sloan I returned to Cincinnati and had my surgery at UC Medical on April 10th. The surgery was successful at getting the entire tumor along with 70% of my liver and 9 clear lymph nodes. Margins were also clear but some very slim (1mm). The cancer was stage 2 and the cells were graded “well differentiated”. I was also told the nerve was involved and that might be a good reason to get Chemotherapy treatments. Do any of you know what exactly the ramifications of nerve involvement are or could be? I did follow up with 6 Chemo treatments of cisplatin & gemcitabine and 6 of gemcitabine only. Took a 4 week break followed by 5 weeks/25 radiation therapy with 5FU treatments. I was able to take the 5FU for only half way through because of low platlettes. I figured since I was relatively young (57) with no other health problems and a strong desire to live I would leave it all on the field as they say. All treatments concluded mid December and my CT scans in January and April of 2015 were NED. I have since been doing just about every Integrative therapy I can find, definitely over the top. Next scan will be in October.
    Thanks for listening and I pray you all have a long and happy life.
    Greg

    #88792

    In reply to: Good News for my Sis

    mizzey100
    Spectator

    Hi There
    Went to Oxford today to see oncologist who was talking about an option for Kim to do a clinical trial
    A trial looking at oxaliplatin and 5FU for advanced biliary tract cancers (ABC-06)
    http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-oxaliplatin-and-5fu-for-advanced-biliary-tract-cancers-abc06
    I also discussed the possibility of sirt and they are going to review again but because of ascites and her resection she might not be eligible. Without treatment a prognosis was given of about 6 months and they cant guarantee whether she will get the chemo option on the trial. Can anyone else shed some light on the trial proposed? Is this something that has been offered in the US? Kim is Stage 4 now and her liver has about 7 grape sizes nodules/tumours? . She also has lymph node involvement around the abdomen and ascites.
    Bitter sweet day as her daughter had a GCSE results today which were fantastic.
    Love to hear of anyone in a similar situation or been through these options themselves x

    kvolland
    Spectator

    Michelle –
    Sounds like you guys have a plan. Mark was on blood thinners through about half of his 6 months of chemo due to his clot after surgery. We didn’t have any issues other than he got nose bleeds off and on but they usually stopped without an issue.
    Weight is always an issue. Mark was 245# when he had his surgery. He got down to about 190ish after surgery then leveled out finally at about 210# after just chemo. When he did the chemo (5FU) with the radiation he got down to 158# but like I said he had rare and severe reaction to the chemo….they told he could stop but he refused. We got him back up 210 after that. We did a lot of protein shakes. And you might out GNC or other health food store for flavored protein powders….we used several different flavors in his protein shakes.
    KrisV

    kvolland
    Spectator

    Michelle –
    Oh Gosh, congratulations to your mom for having a great surgery. The recovery was a little ugly but the clear margins and no nodes make it wonderful.
    My husband had his surgery in June 2014 with clear margins the second time and 2 nodes positive. He too had a rough recovery. They told him 5-7 days in the hospital and he had 14 total…he couldn’t move for three days due to pain in his shoulders then got a blood clot in his arm from the PICC line. He did chemo (gem/oxaliplatin) then did radiation with chemo (5FU). His theory was that he wanted every chance there was to beat this cancer.
    What I can say is that when/if it comes back it is usually fairly aggressive and hard to manage after that. Whether then extra treatment helps I don’t know but it’s the best shot at beating it. I would look at your mom’s age and general health. Do you think she could handle it? Everyone reacts differently to the chemo from really bad to walking through. My husband had very little problems with the Gem/Ox but the 5FU darned near killed him (he had severe and rare reactions to it).
    It’s a tough decision and one many people have had to make. Good luck and keep us posted.

    KrisV

    #88492

    In reply to: My Introduction

    kvolland
    Spectator

    Dear Val –
    Welcome to the family….the one no one really wants to be a part of but we are always here and ready to help if needed.
    Sounds like things are going pretty good for you and that makes me very happy for you. Getting on a trial like that and having everything go pretty good is wonderful.
    For your feet it sound like Hand-Foot syndrome, my husband had it so bad during his treatment with 5FU that he couldn’t walk. We used Eucerin cream rubbed in carefully like three times a day then used footwear that wouldn’t rub on his feet….diabetic socks and slip on moccasins. His feet burned like they were on fire or that he had gotten burned….they were red and hot to the touch to we would wrap them in cool wash clothes or soak for a little bit in cool water. Eventually it got better as his system got used to it.
    Hope things continue to go good for you.

    KrisV

    #86919

    In reply to: My Mum Mags

    dukenukem
    Member

    Onc’s don’t know everything. Mine pushed me into FOLFOX6 which basically did nothing – at best it may have held things stable for a few months, which is good news.

    My FoundationOne report identified some genomic alterations. Since the FOLFOX is no longer working, my onc has no further options for me in the way of treatment. However, a new onc at the Cleveland Clinic has identified a clinical trial that he is conducting that I may be eligible for. I did the pre-screening but there is a problem with low platelets. I go for re-test April 6. If things are good, I start April 13. (In fairness to my current onc, she identified the “brand new” trial after I had been in contact with the Cleveland Clinic.)

    Kevin, you have to make the best decisions you can at the time, based on what you know. CCA develops a resistance to chemo treatments. Sometimes not just one at a time, but broader. The commonality between my chemos is a platin-based chemical. Whether it’s cisplatin, carboplatin, or oxaliplatin, I think CCA develops a resistance faster with each new chemical. They are paired with other chemicals (gemzar, 5FU) which may help extend their usefulness, but nothing works forever. By bringing in the SIRT you were giving a new form of treatment a chance.

    When the Foundation report comes back, it will list a few ongoing trials. If none are available to you, keep searching the Trials section here to find out what is coming out. Plus, Gavin is invaluable at posting new stuff. Watch his new posts.

    After carbo/gem stopped working for me, my onc put me on gem alone which worked well for many months.

    Experience of the doctors with CCA is of paramount importance. I was (maybe) the second one my onc had ever treated. The whole center had only treated four in three years. No second opinions there. Don’t underestimate the value of a second opinion.

    Hang in there. We are all pulling for you and your mum.

    Duke

    fightcc
    Member

    Sorry for the multiple topics, thought it might be easier than posting separate ones.

    A brief history –
    I had a resection of my tumor in February 2014 in addition to that –
    right side of the liver removal
    gall bladder removal
    bile duct removal – re-routed to intestines
    small section resection of small intestine
    Gemzar/Oxaliplatin for two months
    After that – Radiation Monday through Friday for six weeks, 5FU for first and last week of Radiation
    Gemzar/Oxaliplatin for 1 month after Radiation

    more detailed history here – http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=12625

    Since then –

    Final chemo in September 2014. During my radiation treatment I developed an incisional hernia from the surgery in February 2014 (do not feel that radiation caused, just happened concurrently). Doctor said it looked like my bowels were pushing through my abdomen in the same place my incision was for tumor removal. Doctor would not operate until all of my treatments were complete and I had rested for at a minimum of 3 months. PET scans in October 2014 and January 2015 came back clear.

    Surgery was performed on January 30th of this year and biological mesh was placed in the area where the hernia was. During the surgery, surgeon discovered three nodules, two of the nodules were intraperitoneal and one of them was adherent to the peritoneum. One of the nodules was biopsied and was found to be positive. Although not entirely surprised, it seemed a bit odd that all of my scans have been clean. My oncologist thinks this is a recurrence of the same cancer and not new.

    My oncologist sent my specimen to Foundation One for genomic testing and I am waiting on my results (will probably be another week or so). My doctor has not provided any treatment options at this point and wants to wait until this test is returned before discussing further treatment.

    I noticed and have posted on Matt Reidy’s thread the similarities of our journey’s but wanted to get input from others on the following:

    Has anyone else had any specimens submitted to Foundation One and have they suggested alternative treatments and have you started any and with what results?

    I have always had this abdominal fullness after eating and it never mattered how much I eat. It will last for hours and usually until the next time I eat. It doesn’t look like I’m bloated but feels similar. Sometimes the best relief is to lie flat on my back. It feels like when the organs drop and there is no pressure there is quite a bit of relief from the fullness. My doctor told me to eat smaller meals throughout the day, but the size of the meal never mattered. I’ve tried eliminating the usual bad stuff from my diet but it doesn’t seem to make any difference. I always thought it was in part because of the hernia, but now that that’s fixed, I still have the feeling. Is this the new “normal”? I certainly hope not. My doctor said that because of the surgery and re-routing it will take time for my body to re-sync and function the way it used to. Seems like a long time…. Have any of you experienced this or are you currently?

    Thanks for any input/suggestions you have

    ~Kris

    kvolland
    Spectator

    Louie –
    Welcome to the best little family ever. Your husband sounds a lot like mine. He was diagnosed in May 2013 with Hilar CC, Klatskin’s tumor. I have been a nurse for almost 20 years and had never heard of it. We were in shock. On June 4th he had a 14 hours surgery with a left lobe resection, partial right resection, Roun-en-Y procedure along with lymph nodes removed….there were other things they did too but the resection was the important part. He spend 14 days total in the hospital due to the length of his surgery and some complications such as a blood clot and his external bile drain plugging up. He had gone through 6 months of Gemcitabine/Oxaliplatin chemo every other week. Then a short break the almost exactly a year ago he did 25 treatments of radiation with continuous infusion of 5FU. He was quite ill for a little while after the radiation but is now deemed cancer-free. His two year follow up is is a few weeks and were are happily looking forward to it.

    We actually wend into the surgery not knowing 100% sure that it was cancerous, there was a slight (very slight) chance that it wasn’t. Out surgeon did not want to risk an infection related to an ERCP just before surgery so the diagnosis came after surgery.

    Also his Ca 19-9 was significantly elevated at diagnosis. It has been all over the place during treatment and only in the last lab check was found to be at 35.

    Hope things continue to go well and keep us posted.

    KrisV

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