Discontinuing Treament – Not Sure Why

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  • #48916
    lainy
    Spectator

    Dear Aida, I have been thinking about you and wanted to know if Dad was doing any better. While we are not Doctors or professionals we do have a good understanding of this disease and what to expect. You have done all the right things and the best move was to call in Hospice. If Dad was unable to walk about and is getting so frail he probably could not make a trip outside your city to visit a new Doctor or Clinic. As we always say, comfort is key and you have done it well. My prayers and best wishes are going out to you. Be strong.

    #48917
    tomlee5073
    Member

    Adida, it looks like you’re getting a lot of good (although somewhat mixed) advice on how to proceed. It’s a bit of a hike from Michigan, but I highly recommend the Mayo Clinic. Check with the insurance carrier to make sure they’ll cover the second opinion. You don’t need a doctor’s referral to get into Mayo. Go to their website and you’ll find a link to their self-referral page. I filled out the forms on a Thursday night and had a call from Mayo on Friday to set up an appointment – and had one within two weeks.

    I happended to like what they told me there – but even if I hadn’t I had the satisfaction and peace of mind of knowing that I’d “gone to the top” for treatment options.

    Best wishes for you and your dad.

    #48915
    lainy
    Spectator

    Aida, please ask Hospice to give Dad something for the swallowing. Is he on Oxygen? I found that when Teddy went on Oxygen he just felt better. Is Dad on enough pain meds? Comfort is now the key word here.

    #48914
    aida
    Spectator

    My dad hardly speaks now because its painful for him to speak and swallow. Anyone have any suggestions that might help with this?
    Thanks.

    #48913
    lainy
    Spectator

    Dear Aida, I am so very sorry to hear of your Father’s turn of events. Calling Hospice was a good thing to do and they will see to it that he is very comfortable. That is the bottom line for now. Try giving Dad Carnation Breakfast shake. Comes in different flavors and goes down easy. You can also blend it with fruit. It serves as a whole meal if he is not eating much else. Good luck on everything and please keep us advised on how he is doing.

    #48912
    aida
    Spectator

    Wanted to give s quick update on my dad…
    In mid-March fluid started to build up in his abdomen and his Oncologist wanted to discontinue chemo because he felt my dad wasn’t responding to the drugs. The oncologist changed his mind and suggested my dad try different chemo – 5-FU & Erlotinib. My dad did two cycles of these drugs and they have almost killed him. He has gone downhill fast since starting these drugs. Today we decided to discontinue all treatment and focus on comfort alone. My dad’s lost so much weight. He’s just skin and bones right now. He barely eats. Only leaves his bed to use the bathroom. He’s so weak and lifeless. We now see it was a big mistake to try more chemo. He has no quality of life.
    We have Hospice coming tomorrow to get him registered and all that.
    He’s been getting his belly drained every week and they’ve been taking out about 8 liters each time.

    #48911
    lainy
    Spectator

    Dear Aida, welcome to our wonderful family but sorry you had to join us. I feel also that 2nd or 3rd opinions are in order here. I agree with Nancy that unless Scans were taken how can the doctor know if the chemo worked or not!! On our Discussion Board page is a Category for Hospitals and you may want to look there to see if anyone gave some suggestions for Michigan. And at the top of every page is a search engine where typing in any word will pull up a lot of posts on the subject you are wondering about. Good luck and please keep us posted.

    #48910
    jathy1125
    Spectator

    Hi I was 52 when I was diagnosed. I am a cc survivor due to transplant. Like everyone says get to a major hospital and get more opinions.
    My miracle happenned because of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman helped develop the Mayo protocol. Since you are in the midwest Barnes and Mayo are two good options. You can read my story by going to my FB page-Catherine Sims Dunnagan and look for telegraph link.
    Lots of prayers-Cathy

    #48909
    pcl1029
    Member

    Hi,
    Your dad is only 54 years old,it is too young to give up for just trying the 1st-line regimen without considering other alternative treatment plans unless he is too weak or too advance into the disease. If I were you,I will do the following;

    1.Find out the CT Scan result(you should have one 3 month after the !st chemo and the last lab results,) eg.CEA,CA19-9,liver enzymes ;then compare them to the one in October,the one before the chemo starts. All these reports can be obtained through the hospital or his/her office where your oncologist practiced.
    2. google for the definitions to understand the medical terminology in the reports and therefore you will have a better picture about your dad’s condition
    when you talk to the doctors.
    3.obtain your dad’s permission and get medical records from the hospital to find out the reasons why the oncologist had to terminate the treatment and did not proceed with other treatment plans instead of hospice.(it should be appear on the” progress notes” on the date that the decision was made to your dad.);or you can ask the oncologist or your primary doctor politely and directly for the explanation.
    4.Ask your dad’s primary doctor or healthcare provider(insurance co,hospital) to refer him to hospitals which familar with CC (eg like Mayo or MD Anderson) for other treatment options even if you are satisfied with the primary and oncologist explanations.
    by the way,ascites or edema is not a reason for discontinuing chemo treatment;reaction to one chemo regimen does not mean your dad will react to all other regimens;and of course,besides systemic treatment(chemo) there are radiation therapy too.
    I hope the info. helps.

    #48908
    charlea
    Spectator

    I cannot understand why a doctor would not have come and discussed this decision with his patient. I hope you have good success in finding another oncologist who spends the time to share his reasoning and give support when giving such a hard prognosis.

    #48907
    nur1954
    Spectator

    Aida – Unless your Dad had a scan to see if his tumors are increasing or decreasing, how could the doctor say the chemo was not working? Since your Dad apparently had a reaction, perhaps the oncologist just wants him to take a break from chemo. I would question the oncologist about alternative chemo drugs, radiation, or surgery. Jim is right….try one of the larger cancer centers, even if it means a bit of a trip. Best wishes – Nancy

    #48906
    jim-wilde
    Member

    Welcome, Aida. A second or third opinion is warranted in my opinion. Has any other treatment been considered (I. E. surgery)? CC is a rare disease, and because of that, the best treatment is almost always found in big cities and hospitals that are NIH major cancer centers like Sloan Kettering, Johns Hopkins, etc. There are just too few cases for smaller facilities too have enough experience. In my own experience with CC, I had a resection done at NY Presbyterian by Dr. Tomoaki Kato, a very gifted surgeon.

    I wish you well in your search for alternate opinions and don’t let convenience weigh too heavily in where you seek it. I would zero in on the very best places, and don’t limit the direction the opinions may take you in the adventure.

    God bless you and good luck.

    #4904
    aida
    Spectator

    Hello,

    My name is Aida and I have been frequenting this site for several months now but this is my first post.

    My dad (54 years old) was diagnosed with CC in Sept 2010. He underwent a few weeks of radiation therapy shortly after his diagnosis. Since October he has undergone bi-weekly chemotherapy treatments (Gemzar & Oxyplatin). His last chemo treatment was this past Thursday & Friday, however during his Friday infusion my dad began to have a reaction to the chemo and they had to stop the infusion half way. After being admitted in hospital it was discovered that my dad had a lot of fluid in his abdomen (4.5 liters to be exact). To our shock while my dad was in the hospital awaiting the procedure to remove the fluid his medical oncologist sent word through the attending physician that he’s discontinuing his chemo treatments and referring my dad to Hospice because he feels he’s given him the best drugs and its not working. This seems like such a rash decision to us. We’re obviously going to be seeking a second opinion but was wondering if there are some factors that led the oncologist to this decision that we’re not aware of. Since he never came to see my dad to explain his decision we’re left confused as to why he’s stopping his treatments when no one even knows what caused this isolated reaction.

    Any thoughts from someone who has had more experience with this disease?

    Also, we live in Michigan and are in the process of searching for a new oncologist. Does anyone in the area have any suggestions? We’re even willing to go out of state if we found the right oncologist. Any and all input is greatly appreciated.

    Thanks in advance for your feedback.

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