Long term Nexavar users

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  • Luckyliver
    Luckyliver Member Posts: 1
    edited January 2018 #42
    long term nexavar user

    I have been on nexavar for about seven years, with about a 15month break because of misunderstood or just plain bad advice from a Dr.  Side effects were worse at first, from painful stomach aches and nausea , minor hair loss, calouses on hands and feet, sweating and general debillitating fatigue.  Now, I only deal with occasional tiredness, and calouses on my feet.

  • cruze12
    cruze12 Member Posts: 2
    edited January 2018 #43
    mom, may get nexavar, Opdivo, or Keytruda

    My name is Edward, my mom's regimen of chemo was a milder chemo, delivered by TACE.  Transarterial chemoembolization.  Her AFP has climbed to 2304, and her new oncologist is advising either nexavar, or opdivo, or keytruda.  I read nexavar has some serious side effects, just as probably all of them.  My mom's TACE also may have had that side-effect 'chemo-brain', as was confused after her first 2 of 3 doses.  I'm concerned that any of these 3 new chemo agent (systemic) will have more demonstrative effects on my mom.  I appreciate the testimonies on this site.  Thank you

  • Liver cancer
    Liver cancer Member Posts: 52 Member
    #44
    LIGHTCRUISER said:

    ONE YEAR INTO THE JOURNEY

    I was diagnosised with HCC last December 2015, and have no other liver problems,  All of my liver test are norman, and have never had chirosis or Hepititis. The Drs said it was rare for this to happen.  Oh well it did,  had three tumors that showed up on a Scan that was a followup to a bladder problem.  Tumor board agreed due to my age, ( over 65) that they would do an ablation to two of the smaller tumors and then do a Y-90 TACE on the largest one.  Follow up after three months, showed no new tumors and also shrinkage of orginal sites.  Latest CAT scan ( after 6 months from TACE) now shows some small spots, -2mm, but about 10 spread out.  Angio mapping showed that the left lobe is ok, and right has about 5 ,  So will redo the TACE 90 next week than start Nexavar to hold the line on the residual.  The agressive appoach to introduce the drug at this stage is in my opinion a intersting move.  hopefully it will put things in prespective. Just had to post this, sort of letting it our.  we are one year into this and I feel fine, hope I can tolerate the drug in a reasonable quality of life.   thanks for reading.  

    close to my story

    I would like to relocate to an area where the doctors office is located in the same town, you sound like you have a great doctor and I would like to know what part of the country you live in.

  • Mike5072
    Mike5072 Member Posts: 12
    #45
    cruze12 said:

    mom, may get nexavar, Opdivo, or Keytruda

    My name is Edward, my mom's regimen of chemo was a milder chemo, delivered by TACE.  Transarterial chemoembolization.  Her AFP has climbed to 2304, and her new oncologist is advising either nexavar, or opdivo, or keytruda.  I read nexavar has some serious side effects, just as probably all of them.  My mom's TACE also may have had that side-effect 'chemo-brain', as was confused after her first 2 of 3 doses.  I'm concerned that any of these 3 new chemo agent (systemic) will have more demonstrative effects on my mom.  I appreciate the testimonies on this site.  Thank you

    Opdivo side effects

    c9mpared to nexavar Opdivo is a walk in the park .  I had to quit nexavar I after ten months due to many side effects, it’s very debilitating.  I’ve been on Opdivo now for ten months and diarrhea and colitis have been the prime side effects for me.  I’ll have a three to five bad days per fourteen day cycle.  It’s success coupled with ablation treatments has been good.  AFP went from 623 to 4.  No residual signs of lesions.  Good luck.

  • Liver cancer
    Liver cancer Member Posts: 52 Member
    #46
    mperez02 said:

    Nexavar

    For those on it or who have taken it: I know it's a daily pill but do you take it in terms of rounds or do you take it for weeks/months at a time until told otherwise?

    Thanks!

    How to take it

    My doctors make the decisions for me. Every new bottle, is 100-120 pills, they have a dosage decision. One of my pills actually comes in gummy form, sometimes. They have me switch to another pill in another color or shape, keeping the old pills bcz when the current pill drill is complete the next rotation will be either the round or the oblong or the orange or the pink. I haven't finished a bottle of pills in almost a year. Good thing about the shelf life. I'm experiencing the rash. It really flares up if I eat too close to my pill. So doctor had to prescribe a topical.

  • Liver cancer
    Liver cancer Member Posts: 52 Member
    edited February 2018 #47
    cruze12 said:

    mom, may get nexavar, Opdivo, or Keytruda

    My name is Edward, my mom's regimen of chemo was a milder chemo, delivered by TACE.  Transarterial chemoembolization.  Her AFP has climbed to 2304, and her new oncologist is advising either nexavar, or opdivo, or keytruda.  I read nexavar has some serious side effects, just as probably all of them.  My mom's TACE also may have had that side-effect 'chemo-brain', as was confused after her first 2 of 3 doses.  I'm concerned that any of these 3 new chemo agent (systemic) will have more demonstrative effects on my mom.  I appreciate the testimonies on this site.  Thank you

    Chemo Brain

    No matter what kind of Chemo your Mom gets she will have chemo brain. Some tips on dealing with this, jot comprehensive notes when you think of something, be it for a grocery list, store list, a tv show you want to see. You will forget it, yet remember enough that it nags you. Chalkboard and chalk saves having little bits of paper all over the place. And it's good to jot and then find the actual list. It's normal and doc says its temporary. Some days I am lucky to remember my name. Other days I have excellent memory retention and my attention span is incredible. Other days are normal. I don't drive or go out if my chemo brain is really bad. I notice my chemo brain is worse when my diet is bad or I just can't sleep. Then I find a brain interactive something to do and even if I don't do it well it helps. And when she really can't sleep, do something else until you are tired. Don't fight sleep. Take it when you can get it. I never used to day nap, maybe sleep in, but not day nap. Now if I am tired I nap. Sometimes my brain gets rid of conventional hours. Not a good idea to make it a regular schedule, the body needs a regular conventional schedule. Interesting things and brain interactive (even if you don't do it well) games/books/bingo/hobbies. It all helps. It helps to try to stay clear headed, but I think they may be slipping pain meds into the chemotherapy. People and conversation (even if you don't do it well) are important and beneficial for relieving chemo brain. That headache along the side temples is from chemo brain, the head tenses up. Fresh air, a walk even just a little walk clears the head. Just a few suggestions. I can still drive. I give my driving my full concentration bcz my shopping list is written down.

    Another good chemo brain hint, if you have the instructions to the coffee maker/ popcorn popper, what have you, keep them near your appliance in case you forget. : ) I have only forgotten if I hadn't used it for months and months or it's new.

  • Liver cancer
    Liver cancer Member Posts: 52 Member
    #48
    Over a year on chemo pills

    Cold chest and back, slightly rashy from 'eating around my pill ', taking food too close to my pill time and too early in the morning. Legs cramping not as much but still cramping. Nausea finally ended or almost gone. : ) Really, the nausea is much better now, not just bcz I am used to it. Still have the sore in the throat but it is not as painful or all of the time. Still have mouth pressure sores, but the facial swelling is not as frequent oras painful.

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