Dad's chemo woes

tdowdy
tdowdy Member Posts: 11
edited March 2014 in Esophageal Cancer #1
Hello all, just looking for some advice/opinions. My dad Bill, was operated on by Dr. Luketich in Pittsburgh 6/14. He had the MIE surgery. They removed his entire esophogeous and constructed a new one out of his stomach. He recovered from his surgery w/ flying colors. He was staged as T2N1M0. After the op, Dr. L pronounced him 'cancer free' and recommended chemo as a preventative measure - just in case there were microsopic cancer cells floating around.

Now for him the chemo is a completely different story. He is in so much suffering. Dr. Gibson, an associate of Dr. L's, at the Hillman Cancer Center in Pittsburgh is dad's onco. Originally he recommended 4 rounds of chemo consisting of oxaliplatin (intravenously), epirubicin( intravenously),and capecitabine(orally). He's scheduled to have the IV treatment every 3 wks and takes the oral meds on the days after chemo. After his 1st session, he was so sick he was admitted to a local hospital to treat severe vommitting. 8 days after the treatment he seemed to bounce back. He had his 2nd treatment about 10 days ago and again had a horrible time w/ naseau, fatigue, etc. They had reduced his dose of chemo and even added additional meds to control the vomitting. Luckily, he is still on his feeding tube, so they have been able to keep nutrition in him that way.

When he went into to see his onco, Dr. Gibson last week, they sugested that he forgo the final 2 chemo treatments. From what I gather from them, the effects of vommitting counteract any of the benefits of his chemo. Is this common?

Have any of you encountered anything like this? I'm so afraid for him to stop the chemo. But it seems like they are understanding that his side effects are causing more harm than any good the chemo may be doing.

If you'd be so kind to share your opinions or experience w/ chemo, I sure would appreciate it! Thank you!

Tina (fl tina)

Comments

  • GerryS
    GerryS Member Posts: 227 Member
    #2
    chemo suspended...
    I too was suspended of my chemo, dx in feb and surgery in march'10 I also was Stage2N1M0.
    After 2 rounds of chemo (cispatin and 5FU) my chemo was stopped because my kidney fuction was compromised. The oncologists, my local and oncologist from Mayo, MN decided not enough would be gained contining chemo. There is no data I was told to support additional chemo treatment. I just had my first scan (CT) since going off chemo in June, it was clear. Don't worry, have faith, and best of luck and my prayers are with you.
    GerryS
  • sandy1943
    sandy1943 Member Posts: 824
    #3
    Hello, I had chemo before
    Hello, I had chemo before surgery-even thou I was sick sometimes, it was never severe. I still had cancer cells in one lymph node after surgery, so chemo was started again. Two weeks after it was started, I had a blood clot. the oncologist stopped all chemo because he said it was destroying my body. My ct scans show I am desease free since Oct. 2008. Praise the Lord for this. Like me, have faith--the chemo he has received might be enough!
    Sandra
  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
    #4
    sandy1943 said:

    Hello, I had chemo before
    Hello, I had chemo before surgery-even thou I was sick sometimes, it was never severe. I still had cancer cells in one lymph node after surgery, so chemo was started again. Two weeks after it was started, I had a blood clot. the oncologist stopped all chemo because he said it was destroying my body. My ct scans show I am desease free since Oct. 2008. Praise the Lord for this. Like me, have faith--the chemo he has received might be enough!
    Sandra

    Has he had Emend?
    It helps a lot with the nausea. Also, if he is on xeloda, that is MUCH harder than 5fu on those who have had the surgery as their tummy is so much smaller. Perhaps a change to the pump would help.

    Chemo affects everyone differently, but the stuff you are on made Layne very sick--there are other chemos out there that may not do that. Folfox and DFox weren't as bad on Layne.

    Talk to your doc about changes, not just stopping. There are alternatives. And an emend RX is very helpful.
  • tb7
    tb7 Member Posts: 52
    #5
    Anti-nausea medications . . .
    Hi Tina!

    Was your dad given anti-nausea medications as part of his treatment? My husband had chemo before surgery and also with a recurrence twenty-one months after surgery. He did not have any of the problems you are describing. Getting sick with the rearranged plumbing is certainly uncomfortable and best to avoid.

    My husband was given anti-nausea pills to take day before, day of, and day after treatment. He was also infused with something on the same day as treatment. I can look up what he received if you would like to know what it was. I would definitely inquire of the oncologist about the drugs your dad is getting and if they include something to prevent nausea.

    Having suggested this, chemo drugs are powerful and patients react quite differently to them. Sometimes different combinations are easier to tolerate than others. You might want to explore another chemo regime. Is Dr. Luketich involved in determining the chemo agents your dad is using? Might we worth following up with him as well.

    Best wishes going to you and your dad . . .

    Trisha
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • tdowdy
    tdowdy Member Posts: 11
    #7
    GerryS said:

    chemo suspended...
    I too was suspended of my chemo, dx in feb and surgery in march'10 I also was Stage2N1M0.
    After 2 rounds of chemo (cispatin and 5FU) my chemo was stopped because my kidney fuction was compromised. The oncologists, my local and oncologist from Mayo, MN decided not enough would be gained contining chemo. There is no data I was told to support additional chemo treatment. I just had my first scan (CT) since going off chemo in June, it was clear. Don't worry, have faith, and best of luck and my prayers are with you.
    GerryS

    Gerry S, glad to hear your
    Gerry S, glad to hear your scan was clear! I'm sure it was a hard decision to make to suspend your chemo, but it looks like it turned out all for the best for you. Dad's onco works with in his cancer doctors group, so I'm hoping that together they can decide what is the best option for dad.
  • tdowdy
    tdowdy Member Posts: 11
    #8
    sandy1943 said:

    Hello, I had chemo before
    Hello, I had chemo before surgery-even thou I was sick sometimes, it was never severe. I still had cancer cells in one lymph node after surgery, so chemo was started again. Two weeks after it was started, I had a blood clot. the oncologist stopped all chemo because he said it was destroying my body. My ct scans show I am desease free since Oct. 2008. Praise the Lord for this. Like me, have faith--the chemo he has received might be enough!
    Sandra

    Disease free for 2 years
    Disease free for 2 years sure is something to celebrate about! I'm trying to have faith, but sometimes it is so difficult.
  • tdowdy
    tdowdy Member Posts: 11
    #9
    tb7 said:

    Anti-nausea medications . . .
    Hi Tina!

    Was your dad given anti-nausea medications as part of his treatment? My husband had chemo before surgery and also with a recurrence twenty-one months after surgery. He did not have any of the problems you are describing. Getting sick with the rearranged plumbing is certainly uncomfortable and best to avoid.

    My husband was given anti-nausea pills to take day before, day of, and day after treatment. He was also infused with something on the same day as treatment. I can look up what he received if you would like to know what it was. I would definitely inquire of the oncologist about the drugs your dad is getting and if they include something to prevent nausea.

    Having suggested this, chemo drugs are powerful and patients react quite differently to them. Sometimes different combinations are easier to tolerate than others. You might want to explore another chemo regime. Is Dr. Luketich involved in determining the chemo agents your dad is using? Might we worth following up with him as well.

    Best wishes going to you and your dad . . .

    Trisha

    Hi -Trisha, yes my dad was
    Hi -Trisha, yes my dad was given a number of anti-nausea meds. Zofran was one, he was also given benadryl when he was in the hospital. For this second round he was given zofran and also had an anti-nausea patch.

    I'd really appreciate it if you could tell me the pills your husband had b4, during and after and the infusin meds. I have a feeling there are still things that he can try, but that he is just feeling so ill, that he'd rather just pass on the chemo if it's an option.

    I've got to admit I'm confused as to which dr makes which decisions and who to contact at this point. Dr. L did the surgery and now his associate Dr. Gibson is running the chemo portion of treatment.

    Also, I'm down in FL while my parents are in PA, so would I be able to contact one of these drs on my own? I'd just like to be able to hear their perspective on the treatment. I don't want to step on my parents toes, but like to be able to hear directly from the dr what his options are and what are the +s and -s of each one.

    Thanks again for your advice Trisha
  • tdowdy
    tdowdy Member Posts: 11
    #10
    unknown said:

    This comment has been removed by the Moderator

    William, thanks as always
    William, thanks as always for your input. I have read and reread so many of your posts on the site to try an get an understanding of this disease. My kids are going thru a Star Wars phase right now, - if you're familar w/ the movies I'd have to say you are the YODA of this group.

    My Dad has taken Zofran in conjuction w/ his treatment and I'll have to check about the Emend. It does seem like he has that gag reflex that seems like vommitting that you referred to in your post. How did you get past that?

    Also, I'll be sure to pass on to my mom Sherri's solution for hydration. My dad does have a port and since my mom has been working with his feeding tube, I'm sure she can handle hooking up and IV as well.

    Thank you as always for offering your help. You have such a weatlth of experience and such an open, great way of sharing it.

    Hope all is well with you and your family.

    Tina in FL
  • unclaw2002
    unclaw2002 Member Posts: 599
    #11
    tdowdy said:

    Hi -Trisha, yes my dad was
    Hi -Trisha, yes my dad was given a number of anti-nausea meds. Zofran was one, he was also given benadryl when he was in the hospital. For this second round he was given zofran and also had an anti-nausea patch.

    I'd really appreciate it if you could tell me the pills your husband had b4, during and after and the infusin meds. I have a feeling there are still things that he can try, but that he is just feeling so ill, that he'd rather just pass on the chemo if it's an option.

    I've got to admit I'm confused as to which dr makes which decisions and who to contact at this point. Dr. L did the surgery and now his associate Dr. Gibson is running the chemo portion of treatment.

    Also, I'm down in FL while my parents are in PA, so would I be able to contact one of these drs on my own? I'd just like to be able to hear their perspective on the treatment. I don't want to step on my parents toes, but like to be able to hear directly from the dr what his options are and what are the +s and -s of each one.

    Thanks again for your advice Trisha

    Trisha,
    If your father signs
    Trisha,

    If your father signs a release at the hospital to allow the doctors to speak with you they are able to share information with you. Because of the privacy HIPPA laws they can't discuss his information with you without a release.

    If he hasn't already done that ask him if he is willing to do that. I spoke to my dad and we discussed that there might be times that he or my mom wouldn't be in a position to speak with the doctors, insurance companies etc. so he went ahead and signed releases for me. I can tell you it has been a great help in just managing some of the issues related with trying to help with the paperwork, appointments and even payment issues. You can speak candidly to the doctors as well --- a blessing and a curse.

    I found though sometimes you need to be able to get the information directly from the doctor because often my father tries to minimize or filter the information about what is really going on --- or even worse he doesn't want to hear what is being said.

    Good luck getting those releases.

    best,
    Cindy
  • tb7
    tb7 Member Posts: 52
    #12
    tdowdy said:

    Hi -Trisha, yes my dad was
    Hi -Trisha, yes my dad was given a number of anti-nausea meds. Zofran was one, he was also given benadryl when he was in the hospital. For this second round he was given zofran and also had an anti-nausea patch.

    I'd really appreciate it if you could tell me the pills your husband had b4, during and after and the infusin meds. I have a feeling there are still things that he can try, but that he is just feeling so ill, that he'd rather just pass on the chemo if it's an option.

    I've got to admit I'm confused as to which dr makes which decisions and who to contact at this point. Dr. L did the surgery and now his associate Dr. Gibson is running the chemo portion of treatment.

    Also, I'm down in FL while my parents are in PA, so would I be able to contact one of these drs on my own? I'd just like to be able to hear their perspective on the treatment. I don't want to step on my parents toes, but like to be able to hear directly from the dr what his options are and what are the +s and -s of each one.

    Thanks again for your advice Trisha

    Medications . . .
    Hi Tina!

    The pill that my husband was given day before, day of, and day after was Decadron. In addition to the chemo infusions, he was also infused with Ondansetron (Zofran). And, he took Imodium as needed.

    Re talking to doctors, in addition to having your dad authorize you at the hospital and with his doctors, it might be good for you to have him execute a Health Care Power of Attorney if he feel he would want to do so. All of us in our family have this document for each other, just in case it is needed.

    Hope this helps!

    Trisha
  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
    #13
    tdowdy said:

    William, thanks as always
    William, thanks as always for your input. I have read and reread so many of your posts on the site to try an get an understanding of this disease. My kids are going thru a Star Wars phase right now, - if you're familar w/ the movies I'd have to say you are the YODA of this group.

    My Dad has taken Zofran in conjuction w/ his treatment and I'll have to check about the Emend. It does seem like he has that gag reflex that seems like vommitting that you referred to in your post. How did you get past that?

    Also, I'll be sure to pass on to my mom Sherri's solution for hydration. My dad does have a port and since my mom has been working with his feeding tube, I'm sure she can handle hooking up and IV as well.

    Thank you as always for offering your help. You have such a weatlth of experience and such an open, great way of sharing it.

    Hope all is well with you and your family.

    Tina in FL

    Only Zofran and Benadryl?
    That is where the help STARTS, not the end. EMEND is a miracle drug to Layne. Really knocks out the nausea. You take one the day of treatment and two more the two days after. Dexamethazone is helpful in between zofran tablets, too.

    I would be asking about EMEND. It is amazing.

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