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  • in reply to: Nurses Corner – Professional opinions #89677

    So i will add as a patient and practitioner… great referral to the palliative doctors if they are available but this is what was in my handbag for my personal treatments.

    chemo with Emend (Aprepitant), Aloxi ( Palonosetron)( Dexamethasone, ===== ALL IV .. It is absorbed better this route that is per their packaging instructions for providers.

    Emend and Aloxi are the anti nausea drugs
    dexamethasone is a steroid
    All of these are supposed to give a few days of support for the nausea.

    Once worn off this is what is in my medicine bag for symptoms.

    1) ZOFRAN– who can live without this… I keep the ODT preparation… this is quick dissolving tablets.

    2) Promethizine- an old but goody anti nausea medicine… but will make you sleepy… might be good after that steroid to help with insomnia.

    3) Reglan- helps with digestion…. gets the system working if a bit slow and helps with nausea.

    4) Ativan- if all else fails and I am not keeping anything down will work.. only had to use this when I was on oxaliplatin… did not agree with me.

    5) And if all else fails i go to a cup of mint/ginger tea…. :)

    Not sure about anything else out there but I am sure there are tons other medications .. you just need to discuss with your doctor and make them think outside of the box for relief!


    in reply to: ” Sally Toad” #93220

    So here is the update on the actual treatments I have received… I

    August 2015– I had SBRT to my spine and a meningioma in my head…( it is not cancerous but a benign finding on MRI)

    September 2015 – started chemo- gemzar/cisplatin

    December 2015- took a small break for the holidays and to recover ….. was having low Hemoglobin counts and requiring frequent blood transfusions.

    January 2016- jumped back on the gem/cis train. Cancer was stable with perhaps some shrinkage. BUT nothing new….. holding steady. I also went back to work full time with a gracious work schedule that involved teleworking.

    May 2016- oops need a break again …. those damn red blood cells giving me trouble and needing transfusions. Cancer with slight growth but STABLE

    JuneJuly 2016- trial of oxaliplatin… thinking it might be easier on the blood counts.
    Had terrible reaction… affected my eyesight… a under reported and rare side effect.. My optic nerve was irritated… Stopped and it corrected itself.

    August 2016- back on my old friend gem/cisplatin.

    October 2016 – BREAK…. getting ready for clinical trial.

    November 2016… off to DUKE and participated in ABBVIE 399. Well here we are with some growth 17%… not enough to come off trial until BAM!!! I can’t see well and I am in the worst pain of my life….. and yes I now am off trial.

    January 2017- back to work and having another break… time to think….. I am still stable living with what I have but what to do ……

    Feb 2017– WHY not do SBRT…. first new radiation oncologist freaked out …. NO way … go home with palliative care…. and maybe a new spot of cancer in my SI joint though it has been there since 2015. He said I was ” too healthy and active … that he didn’t want to see that go away as there was quite a bit of risk in the treatment I was asking for…….. WHAT … to Well….. I wanted to say ” You ASSEHOLE… I am going to die without treatment” What a stupid and uniformed thing to say…. so I hunted down my old radiation oncologist,….. and within an hour of that repulsive appointment I had a YES and not too far away…

    March 2017- SBRT to my left lung nodules and SI joint…. Hallelujah!!

    March/April 2017- Xeloda 1500 mg BID

    May 2017- welcome my old friend back gemzar/cisplatin….. got to kill a little of the cancer since xeloda was not ready for the battle…URGGH

    June 2017- waiting to complete SBRT to my last lung mass… this one is tricky…. taking lots of doctors thinking outside the box….. but yup we can do it… however oops….. those damn polly wags…. two too small to measure spots in my liver…. DAMN. What to do now…..

    July 2017 — clinical trial… Against my own advice i am going…. those things make me so damn nervous…. Agreed with great new doctor that we will radiate my lung…. its becoming a problem and then I will graciously leave my liver lesions for acceptance in trial… versus zapping those too. Strange to think I am saving some cancer … that it is needed for treatment ….

    And so that is where I am these days…. living successfully with cancer…my friend and bitter enemy… NO FAILED ATTEMPTS Only SUCCESSES !


    in reply to: ” Sally Toad” #93219

    Hi Y’all!!

    I thought I would come back and give an update. Since my last post so much has happened and I feel it is important to talk about for several reasons. The first is this……….

    Yesterday i had an appointment with a new doctor. He is the founder of a research center that is currently holding about 20 phase 1 clinical trials all of which are immunotherapy. As I was giving my cancer story he was counting the lines of treatment I have received. He felt comfortable enough to talk to me straight as a medical professional and I am sure the story sounded like a linty of medical terms and professional jargon to my poor sister in law who was attending the appointment with me. As the appointment continued I started thinking about this journey. To me it was just chemo and radiation with a side of clinical BUT for the FDA it was a list of what we called failed attempts. I was up to my 6th line treatment by the time the story finished. I couldn’t believe it.. to me it was just different bouts of gemzar/cisplatin…. our normal cocktail for this cancer. To me there didn’t seem so many treatment attempts and then I began thinking what this journey must look like to those who are not living with cancer… crazy.

    As everyone knows from my previous post I have had a long journey with this cancer. This August will be 6 years. I know her well. At this point in time I feel it is my constant life companion. We live in close proximity to each other and are in constant war…. I knock her out for awhile and then damn is there not a bitty tadpole taking up shop..

    I am doing well … strange to say throughout this journey and it was strange to think that I have failed treatment attempts because honestly it was not treatment failure to come on and off chemo, try a clinical trial, and recently to radiate the crap out of these guys. To me they are all winning treatments…. I am still HERE. His recored of failures was my monologue of wins. To me it was a journey of keeping this beast at bay. Tucking in Sally’s babies and sending them on their way. And so today I think what will medicine do with a rapidly growing group of stage IV cancer survivors. For me this has become a chronic health issue. I am not seeking cure as I know we are not there yet BUT I can live with the cancer I have if we do it smartly…. staying just one step ahead of Sally’s babies. So…. the question is how do you live with cancer….

    This is the question we need to explore. Life becomes a constant vehicle of change. Their are moments of crisis and then times that you take a pause… hold still ….. and then ramp it up again. As treatments progress and new drugs are approved we are going to see that this now small group of survivors are going to grow , going to heal, and finally maybe even see a cure…. HOWEVER we are going to LIVE.throught it all. As one of my favorite doctor says ” we are going to kick the can down the road ” until we are there!!

    in reply to: ” Sally Toad” #93218

    Thanks so much. I tend to do most of my chatting in the face book groups but I am glad to come back on and share my experiences with everyone. I hope you are doing well also. I have had a bumpy few months but feeling much better these days. Still fighting this ugly beast.

    in reply to: ” Sally Toad” #93216

    Thanks for your encouraging words. I am sharing my update today. you are right we should keep sharing and hoping that it will help others to keep on fighting.


    in reply to: SO EXCITED #93805

    Thanks guys …. i am so excited to meet you all. I feel like a lone warrior sometimes down here in the south. It will be fun to finally get to hang out and hear your stories.

    See you soon!

    in reply to: SO EXCITED #93799

    I too am very excited to be attending the conference. I attended with my best friend/coworker last year and I have to say the event changed my life. The ability to meet and talk with so many other people who were going through the same thing was mind blowing.. In addition it was at that conference that I learned how survivorship works…. as you know I thought I could not call myself a survivor because I hadn’t beaten this beast yet…. almost as I went 4 years without a recurrence but as I talked with people I learned that I had been beating this beast year after year.. Nothing hold more true this year.

    So I am super excited to be bringing my husband, meet all of my Facebook and discussion board friends, and learn so many new things to bring back to my area. i feel my part of the country is a bit under represented so I feel a bit of responsibility to bring the info back and help those in this area have knowledge and hope about this disease.

    I also want to thank everyone for continued support I have been absent from the discussion board due to a difficult few months. I had started a clinical trial that just wasn’t for me. Hopefully it killed away the metastatic cells that were floating around but I lost quite a bit of vision and had horrific joint pain. Unfortunately this made me less available and very focused on reversing. I have since left the trial and am starting to feel better. I am grateful that the effects are reversing and my eyesight is almost back to normal. What a strange ride…. another post for sure.

    See you guys soon!

    in reply to: Clinical trial ABBV-399 #24755

    Sorry I have been away a bit but I have been super busy with the start of the trial. I am almost finished the first cycle.

    I believe I am in Cohort F as I am on a dose escalating 28 day cycle. I am at the low dose end however I was just told that I am in Process 2.

    I just finished my second treatment. I am receiving my treatment at Duke Hospital with Dr. Strickler. He has a ton of active studies that he is willing to try and qualify cholangiocarcinoma patients. I have also learned that he has several other C MET studies that have involved HER + breast cancers.

    I am doing well. Just noticed fatigue today and some joint aches. I scan in December so we will see how I do.

    Hope all is well.

    PS if anyone is on a CMET therapy I would love to hear from you.

    in reply to: *CC DIAGNOSED on 10-17-16* Need Answers for My Dad Please! #82326

    Good afternoon Kay!

    I have read your post and the great answers from others. I too want to agree with what they had to say and explain some of the importance.

    1. It is not normal that pathology reports come back inconclusive ….. it is something that can happen and with rare cancers much more frequently. Often it is because the medical provider did not get an appropriate amount of tissue to do the needed testing. I was surprised in your story that the doc was able to get a good and appropriate amount of tissue due to the blockage in the duct.

    2. It still sounds like a surgeon is needed ASAP. Something is blocking the bile duct and it appears there is no confirmatory diagnosis. It might be wise to try and find a center that has a great hepatabilliary team… I see Marion has suggested Emory… You definitely need a diagnosis before anyone will be able to treat you..

    3. It also sounds like you are in need of updated scans…whether it is an ultrasound, ct, or PET someone should be looking to make sure there are no other areas that could possible be related to the bile duct blockage.

    4. Make sure appropriate blood work is being done so that you can know the exact state of his liver and biliary system. It will also be helpful in regards to possible markers, and his overall health. Ask for copies so you can have them for any other appointments or questions.

    5.Keep your dads nutrition up and make sure pain is being managed. If he has any underlying conditions such as diabetes or high blood pressure make sure he is in good control. This will help with the doctors talk about what kind of treatment and the risks for it … especially surgery. Those folks in overall good health appear to do better in surgery and recovery.

    6. This cancer does not act in one single way…. some of us have had the privilege of time as our cancers are slower growing but there are others that move very very quickly… Time is of the essence. Don’t take no for answers and if docs are needed too much time to give you guys a proposed treatment plan than jump ship and find another. I was very fortunate to have a fantastic surgical team that had me on the table within a month of my diagnosis.

    7. Make sure you have someone that can support you. You will need someone to hold you up as you help your dad on his journey. Taking care of yourself is vital to this process….

    I am not sure if any of this helps.

    Michelle Pratt

    in reply to: Many Cancer Patients May Have Unrealistic Hopes #86159

    I commend you Marion on having info available regarding expectations. I have joined the ranks of the many folks on clinical trials. It is a phase 1 study and I am in the escalation phase. I had my first treatment yesterday. I have had to continually explain to friends and family that this trial is a way for me to take a break from chemo. That it is not mine or the investigators main aim to see my cancer ” cured”. The goal is for me to have more time with stable cancer and suffer less side effects than what I was having with chemo. A FANTASTIC perk could be shrinkage and just to throw caution to the wind,…. maybe I am the one that might have the cure…

    This is so hard for my love ones to understand. The expectations are like when you get that ” scratch off” lottery ticket and you just know you are going to be a winner. It never crosses your mind that you might not get at least the two dollars you spent on it back… With these trials there may not ever be a return on our personal investment. I know that sounds bleak but that is the hard truth. My new trial oncologist was really great explaining this to my husband when we had our initial meeting. He told him that less than 5% ever respond to trial medications especially a phase 1. I could see his look of disappointment and concern at the new risk. For him it made sense to stick with what we knew was holding the cancer…. a clinical trial served him no purpose if he could not expect a win…..

    Given that this is the reality of a phase 1 or 2 study it makes sense to be realistic in your expectations and know that not only are you possibly going to benefit from the study but that your involvement WILL ultimately help someone else. In addition you want to be careful and have a thoughtful discussion with your medical team regarding the aim of your participation in the study…. what expectation does the medical team have for you and how does your plan of care and personal hopes fit into that study protocol. We have to choose very wisely as so few of us make it into these trials.

    So with all this being said I am beyond grateful that I have this opportunity and the patient side of me is so hopeful that we will see some amazing results.

    With great Hope,

    “Never stop believing in Hope because Miracles happen every day!”

    in reply to: Gem/Cis – Weighing Options #93086

    Hi help with mom,

    My name is Michelle and I am a nurse practitioner and a patient. I have seen your posts about the chemo and others responses. I just wanted to send you my two cents worth….

    To date I have done 27 treatments with gem/cis and one treatment with gem/ox. I had a few weeks with gemzar only…. so I feel that I can share my symptoms. I have had moments of absolute despair with this chemo and many many moments of feeling like I can handle whatever it brings… Overall chemo is no joke no matter what type you are receiving at any age…. there are some things that make it easier and some that make it more difficult which that is of no surprise. I started out last September with a pretty hefty dose. First few cycles I though … easy peasy… no real notable side effects, still able to do some things after chemo, felt bad a few days after … nothing debilitating. Then I had to eat my words… all of a sudden things started really heating up.. figuratively and literally. I had a treatment that left behind tremendous hot flashes and whole body flushing. That cycle also had my hemoglobin plummeting for the first time since I started the stuff. My legs started swelling, i couldn’t get out of bed, I was hot and cold at the same time and somehow covered in sweat…. dripping with so much sweat…. I recovered and was able to have another cycle or two but it seemed that this was becoming my norm and I was starting to hit the wall pretty fast. I forgot one really important item when dealing with chemo….. IT IS CUMULATIVE!! I was going on vacation with my family for Christmas and I couldn’t believe that I was going to be so sick… I was devastated and finally got enough nerve to tell my doctor I needed a break. He was waiting of me to say it…. So I took a three week break and restarted with a 20 % dose reduction. I felt like I was on top of the world and then in about 3-4 months in I hit the wall again… same as before but I swear it felt even worse. I then took another 3 week break while I went on a cruise and visit to Universal Studios. I agreed to try oxaliplatin instead to give my body a bit of a rest…. Things did not work out quite as I planned. Oxaliplatin caused terrible side effects before I ever left the infusion center. At the end of my treatment I asked my mom if my face was drooped. I thought I was having a stroke as my vision became quite odd…. It was like I was looking through a tunnel.. I thought that I was just hypoglycemic until it kept happening. I then was home and couldn’t touch a thing bc of the cold intolerance nor could I drink anything as i instantly felt like glass was in my throat as it closed up. The final outcome was that I had damaged my optic disc and nerve. I am still under the watch of a neuropthamologist. The damage has improved tremendously but since I went back to cisplatin ( a platinum ) based therapy we agreed to monitor my eyes. I did have worsening neuropathy in my feet and had developed this electric shock feeling in my hands and arms. This went away a few weeks after i stopped the oxaliplatin. Our plan then was another 20 % reduction. I continued on a few more months with frequent blood transfusions and one cycle stopped due to a potential neutropenic fever. … I have now stopped my treatments for a few weeks to get ready to start a clinical trial. Through all of this I had minimal growth of my lung tumors sooooooo…. it has worked. I am fortunate that if there is any progression at all with the clinical trial I will have gem/cis in my back pocket. Literature has shown that there is no difference in outcomes if gem/oxali or gem/cis is used. It is noted in literature that gemzar alone is less effective than if used in combination. Platinum therapy is standard treatment for bile duct cancer.

    I am not sure if this is helpful but I wanted to share my experience. The main take away is that chemo is cumulative, side effects are very personal, and lastly cancer treatment is personal and needs to adapt to your life circumstance and bend when needed.

    ” Cancer may have started the fight but together we will finish it !”

    in reply to: FOURTEEN YEARS #69340

    Loraine So glad to provide a laugh because we certainly need them right. ha ha I know that I tend to do as much laughing as I can… I think it is good for our souls and provides some levity to our so serious lives.

    I look forward to hearing others stories so I too can have a good laugh and celebrate how we all are surviving this cancer one day at a time :)


    in reply to: Acupuncture – it has a role in cancer care #60003


    I have used acupuncture this past year to help manage pain and hot flashes. I did not see any effect in helping with the pain/neuropathy in my legs but i did have tremendous relief with my hot flashes. I highly recommend it. Our cancer center offers it at a reduced rate and does the acupuncture as a small group. The provider works on hands and feet. They do it in a small group so that it can be offered at a reduced cost. We were given headphones to listen to calming music and you would have never known there were three other people in the room.

    I am hoping to try another round in the next few weeks for overall stress reduction and to get my energy moving in a positive way. I will let you all know how it goes. I will also see if I can find any literature to support it :).

    in reply to: Chemotherapy – common side effects #93209

    This is a great and informative piece. I highly recommend it for anyone who is getting ready to start chemo. It is easy to read, succinct and so accurate.

    in reply to: ” Sally Toad” #93211

    Thanks everyone… I think each and everyone one of us should really think about how we are survivors. For me there is no thought of giving up…. and I am inspired by each and everyone of you who have shared. There are more long term survivors out there than we are aware of. I think this is because the medical literature has not caught up with what is the reality. People are living and succeeding in having a meaningful life with this awful disease. It is my vow to somehow put something out there in the literature that will demonstrate this. There is survivorship with this cancer and by sharing our stories we will hopefully encourage each other and maybe inspire medicine to start documenting that. Hugs to all my cca fighters!!

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