mixed bag on crizotinib results

NayPaul
NayPaul Member Posts: 230
My wife had her six week scans today. The good news is that thhere has been at least a 30% redction in the tumors/lymph nodes/ lesion we were watchinng. Bad news is that hher lver has several lesions. Onc said that this is not uncommon and as her liver functions are xtill remarably normal, that we shoul stick with the med.

The larger concern is that my wife throws up daily, rarely eats and is always naseous. The onc also said that due to her stomach emptying disease called gastoperisis, she believs my wife is not gettin the drugs out of her stomach, and into the intestions where it can be absorbed. So for the next three weeks, I will be working on that.

Comments

  • sleepless in jersey
    sleepless in jersey Member Posts: 185
    sweet and sour?
    Theres good news, happy for you both! Silly question is she taking the anti nausea meds daily and if so maybe there not working and they could switch it up?
  • Glenna M
    Glenna M Member Posts: 1,576
    Mixed bag
    Great news on the 30 percent reduction!! Is there anything they can do to help get these drugs out of her stomach and into her intestines??

    Praying for continued success.
    Glenna
  • trspaw
    trspaw Member Posts: 73
    Good news - 30% reduction.
    Good news - 30% reduction. Praying that other concerns improve for her.

    God Bless
    Teresa
  • laynie11
    laynie11 Member Posts: 36
    Hi NayPaul,

    Have you considered speaking with an herbalist to help combat your wife's nausea/vomiting? My mom has not needed to as of yet, however, I have had multiple friends with & without cancer, suggest a local Chinese Herbalist in our area, Dr. Han, if/when my Mom needs help controlling negative side effects from chemo (I approved Dr. Han out with my Mom's oncologist to ensure it was/is safe and also that he is legit).

    A friend of a friend with pancreatic CA was experiencing extremely painful ulcers in his stomach due to chemo. He was told by his doctors it was something he had to tolerate. He saw Dr. Han - he prescribed him some herbal concoction which has helped with the pain a great deal and he is doing much better. (Also, your insurance may cover part of the treatment - my Mom's does, by reimbursement). I figure it's worth a try - I will forward Dr. Han's link and perhaps you could find another qualified Herbalist in your area and give it a try. Perhaps Dr. Han's office could even refer you to someone in your area.

    Also, My Mom is experiencing loss of appetite and I just found a wonderful cookbook called The Cancer-Fighting Kitchen by Rebecca Katz. I just made some "Magic Mineral Broth" for my Mom - this way, on days when she can't eat at all, she can at least sip on a very nutritional & rejuvenating broth. It's actually pretty good, I saved some of the broth for use in making soup (going to make broccoli soup from it tonight).

    Here is the link from for Dr. Han - perhaps it's worth a look.

    http://drhenryhan.com/files/about/about-henryhan/index.html
  • laynie11
    laynie11 Member Posts: 36
    Hi NayPaul,

    Have you considered speaking with an herbalist to help combat your wife's nausea/vomiting? My mom has not needed to as of yet, however, I have had multiple friends with & without cancer, suggest a local Chinese Herbalist in our area, Dr. Han, if/when my Mom needs help controlling negative side effects from chemo (I approved Dr. Han out with my Mom's oncologist to ensure it was/is safe and also that he is legit).

    A friend of a friend with pancreatic CA was experiencing extremely painful ulcers in his stomach due to chemo. He was told by his doctors it was something he had to tolerate. He saw Dr. Han - he prescribed him some herbal concoction which has helped with the pain a great deal and he is doing much better. (Also, your insurance may cover part of the treatment - my Mom's does, by reimbursement). I figure it's worth a try - I will forward Dr. Han's link and perhaps you could find another qualified Herbalist in your area and give it a try. Perhaps Dr. Han's office could even refer you to someone in your area.

    Also, My Mom is experiencing loss of appetite and I just found a wonderful cookbook called The Cancer-Fighting Kitchen by Rebecca Katz. I just made some "Magic Mineral Broth" for my Mom - this way, on days when she can't eat at all, she can at least sip on a very nutritional & rejuvenating broth. It's actually pretty good, I saved some of the broth for use in making soup (going to make broccoli soup from it tonight).

    Here is the link from for Dr. Han - perhaps it's worth a look.

    http://drhenryhan.com/files/about/about-henryhan/index.html
  • P-pop
    P-pop Member Posts: 10
    some good news
    Some good new is better than none. The onc can keep and eye on her liver. I can relate with the not eating issue as my wife will only take 1 or 2 bites of something and be done.
  • NayPaul
    NayPaul Member Posts: 230
    P-pop said:

    some good news
    Some good new is better than none. The onc can keep and eye on her liver. I can relate with the not eating issue as my wife will only take 1 or 2 bites of something and be done.

    finally a small turn around.
    The changes in meds we did with the onc maybe working! My wife has not gotten sick for four days, has a much better energy level. That included staying up all day, everyday this week, and walking a fair amount. In fact she had to take vicadin this am because she had such sore muscles from walking and swimming this week. She ate regularly all week and drank lots of water, pop and milk. Enough that she gained five pounds this week. This is the first time she has gained weight since july.

    I dont know what all this means, but it cant be bad. At the very minimim her quality of life is improving, evsn if the quanity does not.
  • lekkerone
    lekkerone Member Posts: 199
    NayPaul said:

    finally a small turn around.
    The changes in meds we did with the onc maybe working! My wife has not gotten sick for four days, has a much better energy level. That included staying up all day, everyday this week, and walking a fair amount. In fact she had to take vicadin this am because she had such sore muscles from walking and swimming this week. She ate regularly all week and drank lots of water, pop and milk. Enough that she gained five pounds this week. This is the first time she has gained weight since july.

    I dont know what all this means, but it cant be bad. At the very minimim her quality of life is improving, evsn if the quanity does not.

    Awesome
    That is an incredible turnaround Paul. It surely does seem as though the meds are working. How wonderful she must feel and how great it must be for you to see her eating, drinking and moving around lots. May it continue to be so.
  • Glenna M
    Glenna M Member Posts: 1,576
    NayPaul said:

    finally a small turn around.
    The changes in meds we did with the onc maybe working! My wife has not gotten sick for four days, has a much better energy level. That included staying up all day, everyday this week, and walking a fair amount. In fact she had to take vicadin this am because she had such sore muscles from walking and swimming this week. She ate regularly all week and drank lots of water, pop and milk. Enough that she gained five pounds this week. This is the first time she has gained weight since july.

    I dont know what all this means, but it cant be bad. At the very minimim her quality of life is improving, evsn if the quanity does not.

    It all sounds wonderful!!!
    The change in meds sound like they are helping and I will pray that her condition continues to improve.

    My best to you and your wife,
    Glenna
  • NayPaul said:

    finally a small turn around.
    The changes in meds we did with the onc maybe working! My wife has not gotten sick for four days, has a much better energy level. That included staying up all day, everyday this week, and walking a fair amount. In fact she had to take vicadin this am because she had such sore muscles from walking and swimming this week. She ate regularly all week and drank lots of water, pop and milk. Enough that she gained five pounds this week. This is the first time she has gained weight since july.

    I dont know what all this means, but it cant be bad. At the very minimim her quality of life is improving, evsn if the quanity does not.

    awsome news
    Thats TERRRRIFIC...
    Im so happy to hear of your news. I agree its been sad on here lately that its great to see this!
    Cheers...
  • Dan620
    Dan620 Member Posts: 220
    Glenna M said:

    It all sounds wonderful!!!
    The change in meds sound like they are helping and I will pray that her condition continues to improve.

    My best to you and your wife,
    Glenna

    Great News
    NayPaul, Nice to hear some good news, been so much sad news lately. Keep the GOOD news coming....... Best wishes for you, your wife and family..... Dan
  • grannylove
    grannylove Member Posts: 183
    NayPaul said:

    finally a small turn around.
    The changes in meds we did with the onc maybe working! My wife has not gotten sick for four days, has a much better energy level. That included staying up all day, everyday this week, and walking a fair amount. In fact she had to take vicadin this am because she had such sore muscles from walking and swimming this week. She ate regularly all week and drank lots of water, pop and milk. Enough that she gained five pounds this week. This is the first time she has gained weight since july.

    I dont know what all this means, but it cant be bad. At the very minimim her quality of life is improving, evsn if the quanity does not.

    Yippeeee
    NayPaul, What uplifting news! So glad you shared it with us. Whatever you and the docs are doing....keep on keeping on! My heart is overjoyed with the positive results. I will keep you both in my prayers and thoughts and look forward to even more good news! Cheryl
  • NayPaul
    NayPaul Member Posts: 230

    Yippeeee
    NayPaul, What uplifting news! So glad you shared it with us. Whatever you and the docs are doing....keep on keeping on! My heart is overjoyed with the positive results. I will keep you both in my prayers and thoughts and look forward to even more good news! Cheryl

    it keeps getting better
    .....I've pretty well determined that my wifes delayed stomach emptying prolem (gastroparesis) has been the main culprit. Now that I have her regularly taking reglan to empty her stomach she is making incredible daily gains. I took her off the steroids she started last week, have cut back her marinol and will discontinue it, we just don't want to cut too many things too quickly.

    She no longer gets sick, is now eating and snacking regularly. We've been to the gym twice this week.... she said she can now tell how week she has gotten. She takes vicadin only for leg muscle pain as she continues to increase her activity her leg muscles are constantly being used. Her voice is back to full strength and her slur that started with wbr is gone. I cannot believe how quickly and to the extent of this turnaround. But I am 100% convinced it was the gastroparesis causing the stomach issues as the drug just sat in her stomach and tore it up. Im just as convinved that. As she is. Now getting the crizotinib into her intestines where it can be absorbed into the blood stream that she is getting much higer doses of crizotinib figting the cancer.

    My big concern now is the reglan... I've heard nasty things about its long term use, and it does make my wife depressed. I did find a drug called domperidone which is not approvedin the us, is in others, and in many it is an otc drug. It supposedly does not effect the central nervous system so ithas very few side effects. I ordered some from a pharmacy where it is an otc. Will run it by the dr, but plan to switch wife to it when it arrives.
  • Glenna M
    Glenna M Member Posts: 1,576
    NayPaul said:

    it keeps getting better
    .....I've pretty well determined that my wifes delayed stomach emptying prolem (gastroparesis) has been the main culprit. Now that I have her regularly taking reglan to empty her stomach she is making incredible daily gains. I took her off the steroids she started last week, have cut back her marinol and will discontinue it, we just don't want to cut too many things too quickly.

    She no longer gets sick, is now eating and snacking regularly. We've been to the gym twice this week.... she said she can now tell how week she has gotten. She takes vicadin only for leg muscle pain as she continues to increase her activity her leg muscles are constantly being used. Her voice is back to full strength and her slur that started with wbr is gone. I cannot believe how quickly and to the extent of this turnaround. But I am 100% convinced it was the gastroparesis causing the stomach issues as the drug just sat in her stomach and tore it up. Im just as convinved that. As she is. Now getting the crizotinib into her intestines where it can be absorbed into the blood stream that she is getting much higer doses of crizotinib figting the cancer.

    My big concern now is the reglan... I've heard nasty things about its long term use, and it does make my wife depressed. I did find a drug called domperidone which is not approvedin the us, is in others, and in many it is an otc drug. It supposedly does not effect the central nervous system so ithas very few side effects. I ordered some from a pharmacy where it is an otc. Will run it by the dr, but plan to switch wife to it when it arrives.

    Tears of joy....
    Your post brought tears of joy to my eyes. You and your wife are amazing people, together you can not fail. I can feel the love you share just from reading your posts.

    This is wonderful news and I will continue to pray for your wife daily.

    My best to both of you always,
    Glenna
  • ViewSonic
    ViewSonic Member Posts: 17
    NayPaul said:

    it keeps getting better
    .....I've pretty well determined that my wifes delayed stomach emptying prolem (gastroparesis) has been the main culprit. Now that I have her regularly taking reglan to empty her stomach she is making incredible daily gains. I took her off the steroids she started last week, have cut back her marinol and will discontinue it, we just don't want to cut too many things too quickly.

    She no longer gets sick, is now eating and snacking regularly. We've been to the gym twice this week.... she said she can now tell how week she has gotten. She takes vicadin only for leg muscle pain as she continues to increase her activity her leg muscles are constantly being used. Her voice is back to full strength and her slur that started with wbr is gone. I cannot believe how quickly and to the extent of this turnaround. But I am 100% convinced it was the gastroparesis causing the stomach issues as the drug just sat in her stomach and tore it up. Im just as convinved that. As she is. Now getting the crizotinib into her intestines where it can be absorbed into the blood stream that she is getting much higer doses of crizotinib figting the cancer.

    My big concern now is the reglan... I've heard nasty things about its long term use, and it does make my wife depressed. I did find a drug called domperidone which is not approvedin the us, is in others, and in many it is an otc drug. It supposedly does not effect the central nervous system so ithas very few side effects. I ordered some from a pharmacy where it is an otc. Will run it by the dr, but plan to switch wife to it when it arrives.

    That's Great News!
    That is great news. I am glad that your wife is seeing great results from Crizotinib. My wife has been on it since the summer, and she is improving daily. I give my wife Compazine or Zolfran 30 minutes before her dosage of Crizotinib, and she has not vomitted since the first week of being on it.

    My wife goes back for scans 1st week of November. Docs have been greatly pleased with the results thus far.
  • mamacita5
    mamacita5 Member Posts: 254
    NayPaul said:

    it keeps getting better
    .....I've pretty well determined that my wifes delayed stomach emptying prolem (gastroparesis) has been the main culprit. Now that I have her regularly taking reglan to empty her stomach she is making incredible daily gains. I took her off the steroids she started last week, have cut back her marinol and will discontinue it, we just don't want to cut too many things too quickly.

    She no longer gets sick, is now eating and snacking regularly. We've been to the gym twice this week.... she said she can now tell how week she has gotten. She takes vicadin only for leg muscle pain as she continues to increase her activity her leg muscles are constantly being used. Her voice is back to full strength and her slur that started with wbr is gone. I cannot believe how quickly and to the extent of this turnaround. But I am 100% convinced it was the gastroparesis causing the stomach issues as the drug just sat in her stomach and tore it up. Im just as convinved that. As she is. Now getting the crizotinib into her intestines where it can be absorbed into the blood stream that she is getting much higer doses of crizotinib figting the cancer.

    My big concern now is the reglan... I've heard nasty things about its long term use, and it does make my wife depressed. I did find a drug called domperidone which is not approvedin the us, is in others, and in many it is an otc drug. It supposedly does not effect the central nervous system so ithas very few side effects. I ordered some from a pharmacy where it is an otc. Will run it by the dr, but plan to switch wife to it when it arrives.

    I'm keeping my fingers and
    I'm keeping my fingers and toes crossed that your sweet wife's progress continues to improve. She is a fighter and is extremely lucky to have you in her corner!