father got adenocarcinoma T4N0M1

jwookie
jwookie Member Posts: 14
Hello all,

I have very sad news to share and I just wanted to share this with all. My father (who is a doctor at 60+) has been diagnosed with adenocarcinoma and after PET scan they put it at T4N0M1. Then after lumbar-puncture they have found cancer cells in the CSF fluid. Cancer cells were found in femur, spine, brain and lungs. They also suspect some lymph involvement. He was having frequent headache and convulsions wherein he just looked blankly at you for sometime. He was also refusing to eat food or drink water.

Imagine the doctor was so rude and said we will not give chemo since its pointless. I am very frustrated and since then have changed the hospital and doctor. With the new setting he has responded well and has started to ingest food and even saw his patient today :)

I hate doctors who do not value human life. I will update all the details and keep the blog updated with the medicine he is on.

Hope to spread some hope.
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Comments

  • lekkerone
    lekkerone Member Posts: 199
    Sorry to hear
    about your dad and it's great that you are finally on the right track. Hope is always valued here.
  • sleepless in jersey
    sleepless in jersey Member Posts: 185
    Im so sorry that you are
    Im so sorry that your going through this. Im so glad you left that Doctor and have found the right one. Also very happy that he is eating now and wow seeing his patients.
    My Mom is 60 nsclc stage 4 similar to your Dad, she has it lung,brain,spine and pelvis. We are on 2nd line of TX (taxotere)
    Mom has a good attitude and im sure your Dad does as well.
    Keep the faith and continue to stay positive!!
  • jwookie
    jwookie Member Posts: 14

    Im so sorry that you are
    Im so sorry that your going through this. Im so glad you left that Doctor and have found the right one. Also very happy that he is eating now and wow seeing his patients.
    My Mom is 60 nsclc stage 4 similar to your Dad, she has it lung,brain,spine and pelvis. We are on 2nd line of TX (taxotere)
    Mom has a good attitude and im sure your Dad does as well.
    Keep the faith and continue to stay positive!!

    EGFR test positive
    He has been tested positive for EGFR receptors. This looks very hopeful cause there are drugs targeting this. Am finding out more on this.
  • stayingcalm
    stayingcalm Member Posts: 650
    jwookie said:

    EGFR test positive
    He has been tested positive for EGFR receptors. This looks very hopeful cause there are drugs targeting this. Am finding out more on this.

    That's great!
    Ask the doc about Tarceva!
    stayingcalm
  • Ex_Rock_n_Roller
    Ex_Rock_n_Roller Member Posts: 281
    "I hate doctors who do not value human life"
    You might be going a little too far there, but by the same token, it appears there are some docs who like to talk straight from the statistics, which can come out pretty cold. Seems like a recurring theme in the short time I've been on here.

    Maybe you don't bet on winning the lottery, but somebody will, and you definitely can't win if you don't play. Glad to hear you've found somebody who's willing to back you in this fight.
  • jwookie
    jwookie Member Posts: 14

    "I hate doctors who do not value human life"
    You might be going a little too far there, but by the same token, it appears there are some docs who like to talk straight from the statistics, which can come out pretty cold. Seems like a recurring theme in the short time I've been on here.

    Maybe you don't bet on winning the lottery, but somebody will, and you definitely can't win if you don't play. Glad to hear you've found somebody who's willing to back you in this fight.

    Gefitinib
    He has been started on Gefitinib http://en.wikipedia.org/wiki/Gefitinib and is been given Methotrexate injection for the past week or so. Looks like Gefitinib would work, will update with his progress in 3 - 4 days. Am hoping for taste to become better and convulsions to become less frequent and him to start liking food again.
  • grannylove
    grannylove Member Posts: 183
    HOPE
    Sorry to hear about your Dad but glad that you are being his advocate! Even though he too is a Dr., he needs to have someone in his corner to make sure all options are considered. Sounds like you found a team that is on the same page. This is a good support board where you can vent, share or seek info. Keep us posted on your Dad's tx. Stay strong and fight this monster! God bless and positive thoughts and prayers to you both.
    Cheryl
  • jwookie
    jwookie Member Posts: 14

    HOPE
    Sorry to hear about your Dad but glad that you are being his advocate! Even though he too is a Dr., he needs to have someone in his corner to make sure all options are considered. Sounds like you found a team that is on the same page. This is a good support board where you can vent, share or seek info. Keep us posted on your Dad's tx. Stay strong and fight this monster! God bless and positive thoughts and prayers to you both.
    Cheryl

    Medicine results
    He has lost around 25 pounds but is responding well to the medicine. He is slowly gaining his daily routine back
  • grannylove
    grannylove Member Posts: 183
    jwookie said:

    Medicine results
    He has lost around 25 pounds but is responding well to the medicine. He is slowly gaining his daily routine back

    Great news jwookie
    Sounds like positive strides! Make sure he is eating a well balanced diet with calories. I lost 25 lbs (which I couldn't afford to lose) and started drinking boost plus for weight gain. I have the dark chocolate flavor and mix it with ice cream for a shake. Pretty good and have been gaining a few pounds a week. You are a good son and are to be commended for taking on this responsibility of advocate. Take care of yourself also and know that you are not alone. Keep strong and I pray your father will kick cancer butt! God bless and prayers Cheryl
  • jwookie
    jwookie Member Posts: 14

    Great news jwookie
    Sounds like positive strides! Make sure he is eating a well balanced diet with calories. I lost 25 lbs (which I couldn't afford to lose) and started drinking boost plus for weight gain. I have the dark chocolate flavor and mix it with ice cream for a shake. Pretty good and have been gaining a few pounds a week. You are a good son and are to be commended for taking on this responsibility of advocate. Take care of yourself also and know that you are not alone. Keep strong and I pray your father will kick cancer butt! God bless and prayers Cheryl

    google doc with the prognosis till now
    https://docs.google.com/document/d/1wVkuSLRso6fh_79YMQ5uMaYELDKC8TqCO-gkGMAiFYY/edit?hl=en_US

    Please post if you cannot access it. It is the complete case and the way it has progessed
  • jwookie
    jwookie Member Posts: 14
    Hi,
    It's about quarter past

    Hi,
    It's about quarter past ten here in the west coast. We are going to have another PET and lumbar punctre for csf this weekend to see if tarceva/erlotinib has made any inroads. Was just feeling lonely and thought of sharing this.
  • stayingcalm
    stayingcalm Member Posts: 650
    jwookie said:

    Hi,
    It's about quarter past

    Hi,
    It's about quarter past ten here in the west coast. We are going to have another PET and lumbar punctre for csf this weekend to see if tarceva/erlotinib has made any inroads. Was just feeling lonely and thought of sharing this.

    So
    he did go on to Tarceva? (I'm the one always hounding people to "try Tarceva" and "ask the doc about Tarceva") Glad to hear it, it's been a good drug for me and I hope it's effective for your dad, too! Post anytime, sometimes people are here in the middle of the night. Here's hoping all goes well and the next scan is a good one!
    stayingcalm
  • jwookie
    jwookie Member Posts: 14

    So
    he did go on to Tarceva? (I'm the one always hounding people to "try Tarceva" and "ask the doc about Tarceva") Glad to hear it, it's been a good drug for me and I hope it's effective for your dad, too! Post anytime, sometimes people are here in the middle of the night. Here's hoping all goes well and the next scan is a good one!
    stayingcalm

    update
    Sorry folks that I did not update this for a while.

    Just an update: He is being treated with erlotinib which is a tarceva equivalent. He has responded well to it. Apart from the rashes, he has gotten back to looking at his patients and is now focussing on meditation and continuing treatment. This particular EGFR mutation looks like has caused him to respond and he has not been getting migraines.

    The PET scan shows reduced presence of lesions on hips and spine (but still present) and the size of lung lesion has reduced.

    While standing, sometimes he feels legs are paralyzed and no sensation in legs for a fraction of time, then he holds on to something near him and then regains balance and sensation.

    Will post from time to time with significant updates.

    Thanks all for the help and support.
  • jwookie
    jwookie Member Posts: 14

    "I hate doctors who do not value human life"
    You might be going a little too far there, but by the same token, it appears there are some docs who like to talk straight from the statistics, which can come out pretty cold. Seems like a recurring theme in the short time I've been on here.

    Maybe you don't bet on winning the lottery, but somebody will, and you definitely can't win if you don't play. Glad to hear you've found somebody who's willing to back you in this fight.

    "I hate doctors who do not value human life"
    Also the doctor he is seeing now is much nicer. He regularly visits in house for a quick chat.

    Somehow the earlier hospital was big, famous and institutionalized.
  • jwookie
    jwookie Member Posts: 14
    soursop fruit
    Has anyone tried out soursop fruit and it's benefits. I read that its leaves and stem have benefits. It is to be taken 3 times a day in the form of tea. The soursop fruit seeds also has some benefits. The stem, leaves and seeds are more potent than the fruit itself.

    http://www.soursopgraviola.com/

    Other google searches also suggest long term benefits. Any inputs on this or has anyone tried it. Thanks.
  • dennycee
    dennycee Member Posts: 842
    jwookie said:

    update
    Sorry folks that I did not update this for a while.

    Just an update: He is being treated with erlotinib which is a tarceva equivalent. He has responded well to it. Apart from the rashes, he has gotten back to looking at his patients and is now focussing on meditation and continuing treatment. This particular EGFR mutation looks like has caused him to respond and he has not been getting migraines.

    The PET scan shows reduced presence of lesions on hips and spine (but still present) and the size of lung lesion has reduced.

    While standing, sometimes he feels legs are paralyzed and no sensation in legs for a fraction of time, then he holds on to something near him and then regains balance and sensation.

    Will post from time to time with significant updates.

    Thanks all for the help and support.

    Is he taking gabapentin for
    Is he taking gabapentin for the neuropathy? It was formerly used for seizure disorders but I have found it to help my neuropathy. As a doc he probably knows but I felt a compulsion to put it out there for others. I was frustrated myself this year when a doc didn't want to do a procedure because I am a lung cancer patient. My oncologist gets several calls a week from docs who ask why bother.
  • jwookie
    jwookie Member Posts: 14
    dennycee said:

    Is he taking gabapentin for
    Is he taking gabapentin for the neuropathy? It was formerly used for seizure disorders but I have found it to help my neuropathy. As a doc he probably knows but I felt a compulsion to put it out there for others. I was frustrated myself this year when a doc didn't want to do a procedure because I am a lung cancer patient. My oncologist gets several calls a week from docs who ask why bother.

    Thanks for the input. We will bring this up in the coming doctor visit.

    father was off methotrexate some 3 months back. He is taking erlotinib to which he has responded barring the above. In the past few weeks he is getting very bad headaches. Brain MRI last week did not show up anything. We are going to get CSF done to see if there are any cancer cells there. If not, then doctors say it could be a side effect of erlotinib.
  • jwookie
    jwookie Member Posts: 14
    dennycee said:

    Is he taking gabapentin for
    Is he taking gabapentin for the neuropathy? It was formerly used for seizure disorders but I have found it to help my neuropathy. As a doc he probably knows but I felt a compulsion to put it out there for others. I was frustrated myself this year when a doc didn't want to do a procedure because I am a lung cancer patient. My oncologist gets several calls a week from docs who ask why bother.

    ommaya reservoir
    Following on this thread.

    As I mentioned before, father was getting seizures again. He had stopped methotrexate 3 months back and was on erlotinib(tarceva) only. There was nothing in initial MRI and CSF. We got CSF testing again and the cancer cells have shown up again :(

    So he was immediately given a shot of methotrexate from his spine and he is feeling better (almost like a switch being turned on).

    The area where they inject methotrexate in the lower spine has become rock hard and it takes multiple attempts for the injection to reach the CSF channel. It also causes him severe pain and is understandably causes pain radiating to his legs.

    So tomorrow he is undergoing operation to get "ommaya reservoir" inserted in his scalp. From this they can inject the medicine directly in his brain in controlled amount. This would alleviate the spinal injection problems he is facing and doctors would be able to administer the drug better. These are names I did not know a few months back and now all this is quite overwhelming.

    We are hoping the surgery goes well, cause with all surgeries under a general anesthesia is a big risk, specially to father who is under such strong medication.
  • dennycee
    dennycee Member Posts: 842
    jwookie said:

    ommaya reservoir
    Following on this thread.

    As I mentioned before, father was getting seizures again. He had stopped methotrexate 3 months back and was on erlotinib(tarceva) only. There was nothing in initial MRI and CSF. We got CSF testing again and the cancer cells have shown up again :(

    So he was immediately given a shot of methotrexate from his spine and he is feeling better (almost like a switch being turned on).

    The area where they inject methotrexate in the lower spine has become rock hard and it takes multiple attempts for the injection to reach the CSF channel. It also causes him severe pain and is understandably causes pain radiating to his legs.

    So tomorrow he is undergoing operation to get "ommaya reservoir" inserted in his scalp. From this they can inject the medicine directly in his brain in controlled amount. This would alleviate the spinal injection problems he is facing and doctors would be able to administer the drug better. These are names I did not know a few months back and now all this is quite overwhelming.

    We are hoping the surgery goes well, cause with all surgeries under a general anesthesia is a big risk, specially to father who is under such strong medication.

    Thank you for the update.
    You have certainly been on an amazing journey.
  • jwookie
    jwookie Member Posts: 14
    dennycee said:

    Thank you for the update.
    You have certainly been on an amazing journey.

    tumor fever?
    He is having fever for the past 2 weeks. It has been on a slow progression up from 99 to 101.5 over a period of two weeks.
    After the ommaya reservoir was placed he has gotten 3 injections of methotrexate and there is no bacterial infections in the CSF fluid. Currently he is admitted to the hospital for observation until the fever comes down. Last PET showed lesions in the lung and spine reducing further.

    I searched around in the net and it looks like tumor fever. The doctors are not saying much as in they are not able to give an explanation. Any advice on what I should be asking the doctor. I also read instances where one has fever (lor grade sometimes spiking) for several months. Anyone had such experience..