Gem/Cis – Weighing Options

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  • #93084

    Wow Michelle! I feel like I could have written that as well, about mom. Minus the vision impairment (that sounds awful) – but the dizziness is there.

    This last infusion- her 3rd – was unlike any other. Yes, the cumulative part is apparent now.
    She was in poor condition as we left the hospital freezing then burning up. Sweating. Shaking.
    She feels flu-like as well. Thankfully, even with recovering this time at my house- with my 3 kids she has remained well. -no fever, etc. She is coughing quite a bit with so much mucus it chokes her.
    Her LFTs are elevated – triple what they were pre-chemo so I wonder if that is contributing to how bad she feels.

    Mom had Mets to bones show up in just 6 weeks between scans before we were cleared for chemo. I am anxious to see the scan he is ordering next week- to see where we stand and what the plan will be moving forward.
    I think a break for a few weeks will be a good idea regardless of the scan results.

    Im actually trying to plan a weekend to take her some where in between chemo – or after we stop – or…whatever the plan is, when she is having a few good days. Having a hard time determining what would be a good fit for us given that she cant do too much physically for any length of time. She suffers from fibromyalgia and has neck pain from surgeries past. So my thinking cap is on….well, does it ever come off? No. :)

    I appreciate the time you took to write all of that to me. To us. <3

    #93085
    bgmat48
    Participant

    Hi, I am on Gemzar only since July. I was on Gemzar/Cis. since January with shrinkage of lesions. My CC is localised to my liver only. A recurrence 6 months after the left lobe of my liver was cut out and no chemo was prescribed. I can’t help wonder if they had done chemo after surgery, would that have prevented a recurrence,which makes me wonder about my doctor and what questions I should ask him. So far, after each scan, he says that I am doing fine. My next scan is on the 18th of Oct.

    #93086
    mvpratt
    Member

    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 !”

    #93087

    She went with Gem/Oxaliplatin instead of Cisplatin
    She has done 3 rounds now. Her panel is elevated so we will be doing a CT scan before her next treatment to see if we will continue with Gem/Ox or switch.

    Her side effects are extreme fatigue- some nausea and no interest in eating for the first 3-8 days.
    She is getting some neuropathy in her hands and feet and her cold tolerance is pretty bad.

    She drinks Ensure shakes, whey protein blended with milk blueberries and metamucil. Room temp for the first week or so. For her dense is preferred. She nibbles here and there.

    I will say after her 2nd round there has not been as much “bounce back” afterwards. And this 3rd round is pretty bad. For as little as she is capable of doing I hope this damn chemo has made a difference. I selfishly want her to stop so she can enjoy being here but we will have to see.

    #93089
    whatnow
    Member

    Your mom probably heard the horror stories from 30 years ago. My mom did and absolutely refused to do chemo but that was over 20 years ago.

    I’ve chosen to fight and this is what my kids want. After second cycle of chemo I still feel the same as before. I know they had hydration with steroids, then nausea bag followed by gemz last the cis along with more hydration.

    I know I’ve only been through 2 rounds and 1 of the 3rd, but whatever happens I say bring it on. And it did help having my kids tell me what they wanted.

    Get the power port. So nice. Had it done in hospital under twilight sleep. Easy peesy.

    This is just my opinion. It is up to your mom, but your opinion should also be known. You can always stop, so why not try.

    #93088
    deadlift
    Participant

    just saw the response. Seriously. I have 10 lbs of whey on top of the fridge and probably 30 lbs from a sale in our long term food storage. After my wife’s diagnosis i switched jobs for way better health insurance and a pay bump so i bought a rogue rack and bar for the basement. when the wife is resting I can still be in the house and get the lifts in. i’m working with. squat and deadlifts keep me sane through all of this. best part is when the kiddo comes downstairs and i have him count reps. nice to have a cheer leader.

    good luck with your mom!

    #93105

    We dont have an issue with fat intake since hers is ICC at the top posterior right lobe. Thankfully we have no interference with her major duct at this time. She has no jaundice or symptoms other than some abdominal pain and of course the mets to her bones. I will definitely keep this in mind though as we trot along. She is able to eat all macros equally- when she is hungry. She likes Ensure so thats good. Flavorless whey may be a good idea to add to foods.
    Im so sorry for the struggles you and your family are facing. When I see the whey on top of my fridge Ill think of you guys. :) And also wish I was in my garage doing Stronglifts and not nursing my busted knee!

    – thank you so much for your insight.

    #93104
    deadlift
    Participant
    HelpForMom2016 wrote:
    Thank you Deadlift. She feels better when things coat her stomach but maybe not while on chemo.
    By dense I mean with calories, not necessarily the consistency. But very good point. Protein is the macro she needs the most. Her meals will remain few but they need to count. She doesnt drink tea, hates drinking water. It will be interesting to see how this goes.

    Cold sensitivity due to Oxaliplatin will actually nix the smoothies idea I had….. hot soups I guess. Not sure how long that lasts. Going in blind it feels like- hope I do well.

    :) Yes Marions. I have a bag packed. We will have our private room with TV, fridge, microwave.
    We will be there all day so I brought dominos, cards, our adult coloring books, snacks, warm socks for her. She may sleep if shes not too anxious so Ill bring her best pillow.

    understood via calories. problem is, fat is the most dense, but typically not a good idea on the diets that work for CC. That’s why whey and fairlife skim milk are great. loaded with protein, and no fat. Not thick either. sometimes I would even just mix with water for the wife, cause of the cold sensitivity. 8oz milk with the whey at room temperature also wasn’t very cold.
    good luck. Food is very tricky for my wife so I understand the feels.

    #93103

    Thank you Deadlift. She feels better when things coat her stomach but maybe not while on chemo.
    By dense I mean with calories, not necessarily the consistency. But very good point. Protein is the macro she needs the most. Her meals will remain few but they need to count. She doesnt drink tea, hates drinking water. It will be interesting to see how this goes.

    Cold sensitivity due to Oxaliplatin will actually nix the smoothies idea I had….. hot soups I guess. Not sure how long that lasts. Going in blind it feels like- hope I do well.

    :) Yes Marions. I have a bag packed. We will have our private room with TV, fridge, microwave.
    We will be there all day so I brought dominos, cards, our adult coloring books, snacks, warm socks for her. She may sleep if shes not too anxious so Ill bring her best pillow.

    #93102
    marions
    Moderator

    helpformom…….what are your Mom’s favorite foods? I would try to get in as many calories as possible with whatever she can handle. We used TPN with my husband and he took in by mouth whatever suited him.

    It’s normal to be anxious with the first treatment, but it gets easier with each time. Is there something you could take along for the session that could occupy your Mom’s mind?

    I will be thinking of you and wish for everything to work out in the best possible way.

    Hugs,
    Marion

    #93101
    debnorcal
    Moderator

    The drinks are actually thin, such as “cinnamon ginger tea, ginger ale with frozen grapes, ginger tea spritzer. Easy on the stomach.

    #93100
    deadlift
    Participant
    HelpForMom2016 wrote:
    Thank you Deb! Nutritiously dense smoothies are a great idea.
    Ill check it out!

    Careful with dense, depending on what the calorie macros are. My wife has super issues with fat and fiber, which makes it harder to get dense food.

    also this summer is a discount at myprotein.com ; I get the unflavored whey isolate which is very very easy to digest for myself and my wife, and mix it with fat free fairlife milk(which is also no fat, not much sugar but extra protein. We add ripe banana or herseys powder or syrup. My wife lived on that during chemo.

    I say myprotein as they have wild discounts and it’s the cheapest high quality whey i’ve found (i have eaten a LOT of whey trust me) .

    fwiw isolate is also ok for people with dairy issues as it is lactose free.

    #93099

    Thank you Deb! Nutritiously dense smoothies are a great idea.
    Ill check it out!

    #93098
    debnorcal
    Moderator

    When my husband was undergoing chemo, I got a cookbook titled “The Cancer-Fighting Kitchen” by Rebecca Katz. It has healthy, good tasting recipes. I liked that I could look up recipes based on the symptoms they were good for. There is a section that has soup and drinks that are nutritious and tolerable when a patient has nausea. You might want to check it out.

    #93097

    Thank you all for the replies.
    We met with her ONC who discussed the side effects of the 2 chemo options.
    Moms major fear/ anxiety with chemo is the nausea as she is already a weak stomach person, suffers gastritis and cant take many oral meds due to how sick they make her feel.

    GEM/CIS is her option. Her ONC cautioned her about kidney issues and nausea.
    GEM/OX is her 2nd option. He cautioned her about extreme cold sensitivity for the first few days, greater rick of neuropathy but less nausea.

    Choosing the lesser of two evils here. She is going with GEMOX every other Wednesday for 4 treatments. Then we will reassess.

    She has stopped the Harvoni due to how fatigued but insomniatic she is. the nausea, and confusion it causes her. She is so wiped out she cant even go to the grocery store.
    Her HepC viral load was undetectable at 4 weeks. Shes done 8 weeks of treatment. She cant possibly tolerate anything on top of the Harvoni. Her ONC, when I mentioned her stopping said “thats like a lady asking me if she should have a mammogram when she has stage 4 pancreatic cancer” – a little gruff but he shared my sentiment.

    My main concern is her food intake.
    She already eats like a bird, well, less than a bird, so that is my goal – feed her.
    The thought of eating often makes her not want to eat.
    Her body cant possibly have any energy or function properly without adequate nutrition or substantial calories. This is my stress and I fear it will only get worse.

    We go on Wednesday for her first treatment and as Im sure many of you remember the anxiety and gut turning anticipation that it brings.
    12 weeks after mass detected and 4 weeks after mets detected we start treatment. I just hope its not too little too late

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