Tarceva and Exhaustion

vvvccc41
vvvccc41 Member Posts: 13
My wife is a Stage 4 Lung Cancer survivor. She has had chemo and radiation since 2009. She had a clot develop this past August. She started on Tarceva about two months ago and has had one Pet Scan that suggests that the drug is working -- some slight improvement but also a small area that worsened. After consultation with the oncologist, we decided to continue the treatment. But now, less than a week later, she is totally exhausted. She has difficuluty walking without support -- I am worried that it is the Tarceva. Has anyone else had this sode effect? If so, what is the answer.

Her palliative care doctor will come to us tomorrow. And on Friday we see her oncologist to monitor her blodd (after the clot).

Any thoughts and/or suggestions would be appreciated. Here is my email.

Vic C.
[email protected]
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Comments

  • myparentsdaughter
    myparentsdaughter Member Posts: 18
    Hi Vic,
    I'm so sorry to

    Hi Vic,

    I'm so sorry to hear about your wife. My dad who was diagnosed with stage iv nscl
    in April has had about 4 cycles of chemo and he's been on tarceva for 2 months as well. The first month went very well for him other than the oral thrush, but recently he's been very fatique. His fatique seems to be lasting longer and longer...he normally feels extreme weakness for a few days in a week and he's back to his normal self. However since 2 weeks ago, his tiredness seems to last for about 5 days. I don't know what to do but to suggest maybe he gets the fluid in his lung drained. Pleural effusion may contribute to his chest pain and feeling of fatique. My dad is also taking Chinese herbs to help prevent the side effects and other symtoms. I hope your wife's continue will improve soon.

    Nix
  • vvvccc41
    vvvccc41 Member Posts: 13

    Hi Vic,
    I'm so sorry to

    Hi Vic,

    I'm so sorry to hear about your wife. My dad who was diagnosed with stage iv nscl
    in April has had about 4 cycles of chemo and he's been on tarceva for 2 months as well. The first month went very well for him other than the oral thrush, but recently he's been very fatique. His fatique seems to be lasting longer and longer...he normally feels extreme weakness for a few days in a week and he's back to his normal self. However since 2 weeks ago, his tiredness seems to last for about 5 days. I don't know what to do but to suggest maybe he gets the fluid in his lung drained. Pleural effusion may contribute to his chest pain and feeling of fatique. My dad is also taking Chinese herbs to help prevent the side effects and other symtoms. I hope your wife's continue will improve soon.

    Nix

    Hi Nix,
    Thanks for your

    Hi Nix,

    Thanks for your note.

    She had fluid drained almost two weeks ago (1200 ml) -- felt much better for the next several days. Last saturday we even walked along the local greenway (about a half mile or so), beathing was good -- the wheezing she had been experiencing was gone.

    The exhaustion started three days ago. The Palliative Care doctor comes out today. And I will call her oncologist this morning. She just finished two months on Tarceva -- she has had the various skin rashes (forehead mostly) so the Tarceva appears to be working.

    Vic
  • myparentsdaughter
    myparentsdaughter Member Posts: 18
    vvvccc41 said:

    Hi Nix,
    Thanks for your

    Hi Nix,

    Thanks for your note.

    She had fluid drained almost two weeks ago (1200 ml) -- felt much better for the next several days. Last saturday we even walked along the local greenway (about a half mile or so), beathing was good -- the wheezing she had been experiencing was gone.

    The exhaustion started three days ago. The Palliative Care doctor comes out today. And I will call her oncologist this morning. She just finished two months on Tarceva -- she has had the various skin rashes (forehead mostly) so the Tarceva appears to be working.

    Vic

    Hi vic,
    I'm glad the

    Hi vic,

    I'm glad the tarceva is working on your wife. I hope tarceva continues to work its magic on your wife so she can live a long comfortable life. I know there are some people out there who's been on tarceva for years. How is your wife's appetite? My dad has lost his taste but is still forcing himself to eat. He's been feeling extremely tired lately. Hopefully once he gets his fluid drained, he will have his energy back.

    Nix
  • vvvccc41
    vvvccc41 Member Posts: 13

    Hi vic,
    I'm glad the

    Hi vic,

    I'm glad the tarceva is working on your wife. I hope tarceva continues to work its magic on your wife so she can live a long comfortable life. I know there are some people out there who's been on tarceva for years. How is your wife's appetite? My dad has lost his taste but is still forcing himself to eat. He's been feeling extremely tired lately. Hopefully once he gets his fluid drained, he will have his energy back.

    Nix

    Hi Nix,
    the fluid build-up

    Hi Nix,

    the fluid build-up is a continuing problem. She gets it drained then feels great for about a week at which time the fluid begins to build quickly. Then the congestion and wheezin return. We saw the pulomonologist who suggested a drain -- they insert a hose in the side and you can drain the fluid avery few days -- either by a care giver coming out to the home or having the spouse trained to be able to do it (it sounds pretty straight forward so I would be trained for it). The one sticking point right now is that Margaret woud have to come off coumadin to have the procedure done -- that will be up to her onclologist -- it has been almost two full months since the clot so it may be too soon.

    You asked about aappetite -- it has been another ongoing struggle. Margaret has lost 27 lbs since radiation in June -- she is in a weakened state. But the doctor prescribed a couple of appetite stimulants, Regace and Decradon. It seems to be working -- her appetitie has been great the past three days -- she has gained a pound so I am encouraged. We also do ensure Plus shakes with ice cream between meals and b-12 bitamins to increase energy. She is much more alert ths week and I am encouraged. Tomorrow we will work onwalking more than she has been ableto do. her energy levelis up slightly so I hope she will be able to extend herself a bit.

    Vic
  • myparentsdaughter
    myparentsdaughter Member Posts: 18
    vvvccc41 said:

    Hi Nix,
    the fluid build-up

    Hi Nix,

    the fluid build-up is a continuing problem. She gets it drained then feels great for about a week at which time the fluid begins to build quickly. Then the congestion and wheezin return. We saw the pulomonologist who suggested a drain -- they insert a hose in the side and you can drain the fluid avery few days -- either by a care giver coming out to the home or having the spouse trained to be able to do it (it sounds pretty straight forward so I would be trained for it). The one sticking point right now is that Margaret woud have to come off coumadin to have the procedure done -- that will be up to her onclologist -- it has been almost two full months since the clot so it may be too soon.

    You asked about aappetite -- it has been another ongoing struggle. Margaret has lost 27 lbs since radiation in June -- she is in a weakened state. But the doctor prescribed a couple of appetite stimulants, Regace and Decradon. It seems to be working -- her appetitie has been great the past three days -- she has gained a pound so I am encouraged. We also do ensure Plus shakes with ice cream between meals and b-12 bitamins to increase energy. She is much more alert ths week and I am encouraged. Tomorrow we will work onwalking more than she has been ableto do. her energy levelis up slightly so I hope she will be able to extend herself a bit.

    Vic

    They suggested my dad gets a
    They suggested my dad gets a drain put in as well. He's scheduled to do that next week.. But he doesn't want a device attached to him. I don't blame him. The thought of having a device attached to you just makes the desease even more serious. He saw how my mom's health deterioted last year from cancer. She had a needle on her skin so we could administer morphine through her vein. My poor dad was basically her soul caretaker as she only wanted him to do the job and we didn't even know that he was living with lung cancer.

    So I think emotionally he's not ready to have a drain that could be permanently attached to him. It is a lot more convenient than having to go into to the hospital everytime to get the procedure done. My dad's herbalist said that the more he drains the fluid, more will build up. So he is reluctant to
    drain too much fluid. Sorry, what is comoudin? I must have missed the part you wrote about your wife's blood clotting.

    It's great she got her appetite back. Maybe we'll suggest that to his onc next time. He also has difficulty sleeping. Eventhough he feels extremely fatique, he can still be up and about, running errands. I just wish my dad can live comfortably for a long time even if it means living with cancer. My thoughts are with you and your wife.

    Nix
  • vvvccc41
    vvvccc41 Member Posts: 13

    They suggested my dad gets a
    They suggested my dad gets a drain put in as well. He's scheduled to do that next week.. But he doesn't want a device attached to him. I don't blame him. The thought of having a device attached to you just makes the desease even more serious. He saw how my mom's health deterioted last year from cancer. She had a needle on her skin so we could administer morphine through her vein. My poor dad was basically her soul caretaker as she only wanted him to do the job and we didn't even know that he was living with lung cancer.

    So I think emotionally he's not ready to have a drain that could be permanently attached to him. It is a lot more convenient than having to go into to the hospital everytime to get the procedure done. My dad's herbalist said that the more he drains the fluid, more will build up. So he is reluctant to
    drain too much fluid. Sorry, what is comoudin? I must have missed the part you wrote about your wife's blood clotting.

    It's great she got her appetite back. Maybe we'll suggest that to his onc next time. He also has difficulty sleeping. Eventhough he feels extremely fatique, he can still be up and about, running errands. I just wish my dad can live comfortably for a long time even if it means living with cancer. My thoughts are with you and your wife.

    Nix

    Hi Nix,
    Thanks for your

    Hi Nix,

    Thanks for your reply.

    Coumadin (warfarin) is the major bloodthiner they give to prevent clots.

    I agree about the part of attaching something -- makes it more a constant reminder that the disease is with you.

    I had not thought about "the more you drain, the more fluid you build-up" -- I will ask her oncologist and pulmonologist about that. It is true that each time she has had the drain, there has been more taken out (from 750 to 800 to 900 to 1200). But that could also just be the advancing of the cancer -- I do not know. This last time she had the fluid drained, she felt great for a full week. That is the longest post draining period of good health.. The other three times, it was a minor improvement for only a day or so.

    We did not hear back from the pulmonologist about her readiness ofr the drain -- so it could be that when he spoke with the oncologist, the oncologist vetoed the procedure for now due to the clot and the chances of it reforming.

    We will keep your Dad in our thoughts as he gets ready for the drain. Please let us know how it goes.

    Vic

    By the way, we are now on day 5 of a reduced dosage of tarceva -- my wife's strength is returning, slowly but surely --- she has gained 2 lbs this week --- and her system is back up and running (good appetite and regular BMs the last 2 days) -- hopefully she is on a good pattern. But as I have learned with cancer, things can change in a hurry.

    Take care.
  • vvvccc41
    vvvccc41 Member Posts: 13

    They suggested my dad gets a
    They suggested my dad gets a drain put in as well. He's scheduled to do that next week.. But he doesn't want a device attached to him. I don't blame him. The thought of having a device attached to you just makes the desease even more serious. He saw how my mom's health deterioted last year from cancer. She had a needle on her skin so we could administer morphine through her vein. My poor dad was basically her soul caretaker as she only wanted him to do the job and we didn't even know that he was living with lung cancer.

    So I think emotionally he's not ready to have a drain that could be permanently attached to him. It is a lot more convenient than having to go into to the hospital everytime to get the procedure done. My dad's herbalist said that the more he drains the fluid, more will build up. So he is reluctant to
    drain too much fluid. Sorry, what is comoudin? I must have missed the part you wrote about your wife's blood clotting.

    It's great she got her appetite back. Maybe we'll suggest that to his onc next time. He also has difficulty sleeping. Eventhough he feels extremely fatique, he can still be up and about, running errands. I just wish my dad can live comfortably for a long time even if it means living with cancer. My thoughts are with you and your wife.

    Nix

    Hi Nix,
    Thanks for your

    Hi Nix,

    Thanks for your reply.

    Coumadin (warfarin) is the major bloodthiner they give to prevent clots.

    I agree about the part of attaching something -- makes it more a constant reminder that the disease is with you.

    I had not thought about "the more you drain, the more fluid you build-up" -- I will ask her oncologist and pulmonologist about that. It is true that each time she has had the drain, there has been more taken out (from 750 to 800 to 900 to 1200). But that could also just be the advancing of the cancer -- I do not know. This last time she had the fluid drained, she felt great for a full week. That is the longest post draining period of good health.. The other three times, it was a minor improvement for only a day or so.

    We did not hear back from the pulmonologist about her readiness ofr the drain -- so it could be that when he spoke with the oncologist, the oncologist vetoed the procedure for now due to the clot and the chances of it reforming.

    We will keep your Dad in our thoughts as he gets ready for the drain. Please let us know how it goes.

    Vic

    By the way, we are now on day 5 of a reduced dosage of tarceva -- my wife's strength is returning, slowly but surely --- she has gained 2 lbs this week --- and her system is back up and running (good appetite and regular BMs the last 2 days) -- hopefully she is on a good pattern. But as I have learned with cancer, things can change in a hurry.

    Take care.
  • tjerunner262
    tjerunner262 Member Posts: 6
    tarceva and exhaustion
    Hope and pray the best for your wife.

    My wife was on Tarceva for 4 years; fortunately she was not exhausted from it. Her dosage was only 75mg.

    Two key points with Tarceva:

    1. Get tested for EGFR. Tarceva targets this gene mutation. If your wife does not have the gene mutation targeted for Tarceva, you might ask your oncologist about it.

    2. The cancer will develop resistance to Tarceva after awhile, when this happens a different chemo is needed.
  • vvvccc41
    vvvccc41 Member Posts: 13

    tarceva and exhaustion
    Hope and pray the best for your wife.

    My wife was on Tarceva for 4 years; fortunately she was not exhausted from it. Her dosage was only 75mg.

    Two key points with Tarceva:

    1. Get tested for EGFR. Tarceva targets this gene mutation. If your wife does not have the gene mutation targeted for Tarceva, you might ask your oncologist about it.

    2. The cancer will develop resistance to Tarceva after awhile, when this happens a different chemo is needed.

    She does have EGFR mutation.
    She does have EGFR mutation. They had initially tested her for mutation for critinib. Hope that the Tarcevea works for a while -- the first Pet Scan was encouraging -- some big improvement, but also one worsening area.

    Vic
  • vvvccc41 said:

    She does have EGFR mutation.
    She does have EGFR mutation. They had initially tested her for mutation for critinib. Hope that the Tarcevea works for a while -- the first Pet Scan was encouraging -- some big improvement, but also one worsening area.

    Vic

    Hi Vic,
    my dad had a

    Hi Vic,

    my dad had a drainage put in last Friday. I don't know the exact name as I live about 1500 km away from him. The surgery took 45 mins but he had to stay there overnight to make he was doing ok before they discharge him. According to what my dad and sibblings told
    me, he only needs to have it drain when the fluid builds up, thus causing exhaustion. He sems
    to be regaining his energy back and is back to his normal
    self. I speak to him everyday and it's so reassuring to hear him
    that he feels good and is able to run errands and be up and about. Now my only hope is that tarceva is working and is keeping the cancer under controlled or better yet shrink the tumours.

    How is your wife doing? Did she have a drain put in? I hope she is doing wellsnf reacting well to tarceva.

    Niki
  • zinnhuff
    zinnhuff Member Posts: 2
    Tarceva doseage
    Hi. I developed the extreme exhaustion over time. They reduced my doseage a bit and that helped. Also, staying well hydrated seems to help a lot. I drink a lot of water and Gatoraid really helps pick me up when I am down. Dare to dream . . . zinn
  • zinnhuff
    zinnhuff Member Posts: 2
    Tarceva doseage
    Hi. I developed the extreme exhaustion over time. They reduced my doseage a bit and that helped. Also, staying well hydrated seems to help a lot. I drink a lot of water and Gatoraid really helps pick me up when I am down. Dare to dream . . . zinn
  • zinnhuff said:

    Tarceva doseage
    Hi. I developed the extreme exhaustion over time. They reduced my doseage a bit and that helped. Also, staying well hydrated seems to help a lot. I drink a lot of water and Gatoraid really helps pick me up when I am down. Dare to dream . . . zinn

    Hi Zinnhuff!
    I'm so glad you found something to help ease the exhaustion. Does reducing the dosage of your tarceva affect it's effectiveness? If not, I think I will suggest that to my dad so he can get his oncologist to do the same for him.

    Thanks for your feedback!

    Nix
  • vvvccc41
    vvvccc41 Member Posts: 13

    Hi Zinnhuff!
    I'm so glad you found something to help ease the exhaustion. Does reducing the dosage of your tarceva affect it's effectiveness? If not, I think I will suggest that to my dad so he can get his oncologist to do the same for him.

    Thanks for your feedback!

    Nix

    Thank you to all who
    Thank you to all who replied. My wife's situation deteriorated from the time of the initial post. She has continued to get weaker and lose more weight. The shortness of breath attacks had gotten more frequent and severe -- last week she was admitted to the hospital after several such attacks -- she was drained of the fluid again -- this time the fluid was blood red and not nearly ar as clear as before. Her oncologist recommended ceasing all treatment -- the Tarceva has not provided the benefit we had hoped for -- and he also recommended admittance to a hospice house as an inpatient. We are now in an excellent hospice facility in Huntersville (Levine-Dickson) where she is getting first-rate care. Today we renewed our wedding vows (28 years!) with friends and family. Please keep us in your thoughts and prayers.

    Vic
  • grannylove
    grannylove Member Posts: 183
    vvvccc41 said:

    Thank you to all who
    Thank you to all who replied. My wife's situation deteriorated from the time of the initial post. She has continued to get weaker and lose more weight. The shortness of breath attacks had gotten more frequent and severe -- last week she was admitted to the hospital after several such attacks -- she was drained of the fluid again -- this time the fluid was blood red and not nearly ar as clear as before. Her oncologist recommended ceasing all treatment -- the Tarceva has not provided the benefit we had hoped for -- and he also recommended admittance to a hospice house as an inpatient. We are now in an excellent hospice facility in Huntersville (Levine-Dickson) where she is getting first-rate care. Today we renewed our wedding vows (28 years!) with friends and family. Please keep us in your thoughts and prayers.

    Vic

    You got it Vic!!
    So sorry to hear that your wife's condition has deteriorated. Sad news to be sure. I am so glad that you have gotten to renew your vows with this strong and wonderful woman. Please give her a congratulatory hug for me. I will be praying for peace and acceptance for you and family. May your time together be blessed and a source of renewal. I place you and yours in the loving arms of God. Cheryl
  • Glenna M
    Glenna M Member Posts: 1,576
    vvvccc41 said:

    Thank you to all who
    Thank you to all who replied. My wife's situation deteriorated from the time of the initial post. She has continued to get weaker and lose more weight. The shortness of breath attacks had gotten more frequent and severe -- last week she was admitted to the hospital after several such attacks -- she was drained of the fluid again -- this time the fluid was blood red and not nearly ar as clear as before. Her oncologist recommended ceasing all treatment -- the Tarceva has not provided the benefit we had hoped for -- and he also recommended admittance to a hospice house as an inpatient. We are now in an excellent hospice facility in Huntersville (Levine-Dickson) where she is getting first-rate care. Today we renewed our wedding vows (28 years!) with friends and family. Please keep us in your thoughts and prayers.

    Vic

    Vic....
    It breaks my heart to hear of you wife's situation. Please know that I will keep you both in my prayers.

    May God Bless you both,
    Glenna
  • vvvccc41 said:

    Thank you to all who
    Thank you to all who replied. My wife's situation deteriorated from the time of the initial post. She has continued to get weaker and lose more weight. The shortness of breath attacks had gotten more frequent and severe -- last week she was admitted to the hospital after several such attacks -- she was drained of the fluid again -- this time the fluid was blood red and not nearly ar as clear as before. Her oncologist recommended ceasing all treatment -- the Tarceva has not provided the benefit we had hoped for -- and he also recommended admittance to a hospice house as an inpatient. We are now in an excellent hospice facility in Huntersville (Levine-Dickson) where she is getting first-rate care. Today we renewed our wedding vows (28 years!) with friends and family. Please keep us in your thoughts and prayers.

    Vic

    Hi Vic,
    It breaks my heart

    Hi Vic,

    It breaks my heart to hear that ur wife's condition has deterioted. I've read about so many good things about tarceva and hoped that it would on all the cancer patients who are put on it. My dad is also not doing so well. He was in a better shape while on chemo until the 2 nd month into taking tarceva. He's having his lung fluid drained about every 2 week and the colour is red as well. His onc is starting him on altima next week. I wish and hope this will work and my dad will get his strength back.

    Please know that your wife are in my thoughts. Congratulations in the renewal of your vow!
  • kado4
    kado4 Member Posts: 80
    vvvccc41 said:

    Thank you to all who
    Thank you to all who replied. My wife's situation deteriorated from the time of the initial post. She has continued to get weaker and lose more weight. The shortness of breath attacks had gotten more frequent and severe -- last week she was admitted to the hospital after several such attacks -- she was drained of the fluid again -- this time the fluid was blood red and not nearly ar as clear as before. Her oncologist recommended ceasing all treatment -- the Tarceva has not provided the benefit we had hoped for -- and he also recommended admittance to a hospice house as an inpatient. We are now in an excellent hospice facility in Huntersville (Levine-Dickson) where she is getting first-rate care. Today we renewed our wedding vows (28 years!) with friends and family. Please keep us in your thoughts and prayers.

    Vic

    My prayers are with you and your wife.
    Hello.I just wanted to say I am sorry to hear about your wife and her deteriorating condition.I pray for peace for your wife, that she will be comfortable, and not in pain.Hospice care is a wonderful thing.You are not alone.We pray for you.

    Sincerely,Kado.
  • vvvccc41
    vvvccc41 Member Posts: 13
    kado4 said:

    My prayers are with you and your wife.
    Hello.I just wanted to say I am sorry to hear about your wife and her deteriorating condition.I pray for peace for your wife, that she will be comfortable, and not in pain.Hospice care is a wonderful thing.You are not alone.We pray for you.

    Sincerely,Kado.

    Margaret died on Tuesday,
    Margaret died on Tuesday, November 22 at 6:14PM. She was kept cpmfportable during the final days -- thankfully she is no longer in pain.
    Her obituary (Margaret Cifarelli) is at the following link. Thanks you for all of your kind thoughts. Victor Cifarelli
    http://www.raymerfh.com/
  • Glenna M
    Glenna M Member Posts: 1,576
    vvvccc41 said:

    Margaret died on Tuesday,
    Margaret died on Tuesday, November 22 at 6:14PM. She was kept cpmfportable during the final days -- thankfully she is no longer in pain.
    Her obituary (Margaret Cifarelli) is at the following link. Thanks you for all of your kind thoughts. Victor Cifarelli
    http://www.raymerfh.com/

    At times like these I never
    At times like these I never know what to say as nothing seems appropriate and most of the usual responses seem trivial. I am truly sorry your wife lost her battle, it breaks my heart a little more each time someone is taken by this horrible disease.

    Please know that she is always with you and remember all the good memories.

    My deepest sympathy,
    Glenna