Met with the surgeon

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #22
    bailee2012 said:

    Thanks for askin

    Honestly we have just been tryin to get it under control since his dx.  We havent really asked whats later just jumped in and started treatment immediately. At dx stage 4 with numerous mets to liver and lungs and tumor too large to remove so he needed colostomy, his cea was 3600 and we got it down as low as 20 in December then he was fighting a cold so chemo got pushed back couple weeks and then the arterial bleeding ended him in hospital twice in January so chemo was interrupted and all this caused cea back up to 97. So we really just tryin to get things under control still.  I hope everything works for you guys.  Sounds like they are going to be able to remove your husbands tumor which is great!  If he ends up with colostomy you guys will adjust just fine.  It's weird what we all find ourselves able to deal with just to stay in the fight against this mess.  Keep us posted on how things are going. Sending prayers up!

    I hope they get his cea back

    I hope they get his cea back down soon.  Sounds like you guys have been through a lot in the last few months - I hope things improve for you soon. 

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #23
    Chelsea71 said:

    Tans, Ann, Jen,
    Wondering
    Tans, Ann, Jen,

    Wondering what you guys think about Steve taking cimetidine before his upcoming liver surgery (may or may not happen)? Steves onc mentioned that there is not usually a lot of bleeding during liver surgery, unlike his HIPEC surgery. I can't help but think that cimetidine can't hurt. The surgery MAY happen mid to late June. How far in advance should he begin taking it? What dosage should he take? (weighs 205 lbs.). How long after surgery? If you guys could give me your opinions and then I will ask the pharmacist at chemo to make sure there are no interactions.

    Thanks a lot

    Chels - I figure if it can't

    Chels - I figure if it can't hurt, why not try it?   Still waiting to hear if the pharmacist says okay.

    So this is annoying and good at the same time....after meeting with the surgeon and him mentioning the bone lesions, I emailed the onc.   Surgeon hadn't looked at the pet scan recently and couldn't remember if there were new spots or just the same old ones .. grrr.  So I asked the onc that question - her response was none of the bone lesions were positive on the most recent scan; so nothing clearly new.   

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #24
    PhillieG said:

    There Should be a Law

    Where any Dr who tells a patient they have X years to live should have their license revoked unless they are planning on "whacking" the patient on a certain date....
    They don't know so why lie and needlessly upset people?

    I hear you Phil and I was

    I hear you Phil and I was upset with her for a while.  But I have come to like and appreciate her.  She is really good about answering emails and is very patient with my many questions and concerned about me and the kids, along with my husband.   She is young and was referred by a doctor friend of ours.  Her youngest child was born the month before our little guy.  She was so obviously nervous and uncomfortable at that first visit - like she really didn't want to break the news.  She got emotional telling us.   I know that all sounds unprofessional, but I do appreciate a doctor with a human side and I'm not really upset with her about it anymore, though I may mention it to her in the future that it's very overwhelming to hear on that first visit.    

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #25
    jen2012 said:

    Chels - I figure if it can't

    Chels - I figure if it can't hurt, why not try it?   Still waiting to hear if the pharmacist says okay.

    So this is annoying and good at the same time....after meeting with the surgeon and him mentioning the bone lesions, I emailed the onc.   Surgeon hadn't looked at the pet scan recently and couldn't remember if there were new spots or just the same old ones .. grrr.  So I asked the onc that question - her response was none of the bone lesions were positive on the most recent scan; so nothing clearly new.   

    Hey Jen. That's very
    Hey Jen. That's very annoying. We had something similar happen. I'm guessing these bone lesions are a big worry for you. I really don't think it's metastasis. It just doesnt make sense. It would be weird for the cancer to go there this early on in his diagnosis. Bone mets are very painful. Everyone says it. He is not in pain. Right? Two biopsis have been negative. It could be so many other things. The chemo has been working for him. The tumor has shrunk. I think it would be unlikely for the chemo to work in one area area while the "bone mets" progressed. I think it's just a non cancer flukey thing. It's so frustrating. We just met with the surgeon a couple weeks ago. Went over the ct scan. He mentioned that the radiologist commented on some possible swollen lymph nodes in the chest cavity. I had a fit. Said that this is the first that we have ever been told of anything going on in the chest cavity. He assured me that it could be nothing. They had no baseline to compare it to. It wasn't even a scan of the chest. Just pelvis/abdomen. The scan just caught a glimpse of these nodes that seemed big to the radiologist. Said not to worry. Sure. No problem. Months ago it was retroperitoneal lymph nodes that were a concern. That seemed to die down. There just always seems to be some area of uncertainty to stress over. If I were you I would focus on the 30 year comment. That must have been music to your ears.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #26
    Chelsea71 said:

    Hey Jen. That's very
    Hey Jen. That's very annoying. We had something similar happen. I'm guessing these bone lesions are a big worry for you. I really don't think it's metastasis. It just doesnt make sense. It would be weird for the cancer to go there this early on in his diagnosis. Bone mets are very painful. Everyone says it. He is not in pain. Right? Two biopsis have been negative. It could be so many other things. The chemo has been working for him. The tumor has shrunk. I think it would be unlikely for the chemo to work in one area area while the "bone mets" progressed. I think it's just a non cancer flukey thing. It's so frustrating. We just met with the surgeon a couple weeks ago. Went over the ct scan. He mentioned that the radiologist commented on some possible swollen lymph nodes in the chest cavity. I had a fit. Said that this is the first that we have ever been told of anything going on in the chest cavity. He assured me that it could be nothing. They had no baseline to compare it to. It wasn't even a scan of the chest. Just pelvis/abdomen. The scan just caught a glimpse of these nodes that seemed big to the radiologist. Said not to worry. Sure. No problem. Months ago it was retroperitoneal lymph nodes that were a concern. That seemed to die down. There just always seems to be some area of uncertainty to stress over. If I were you I would focus on the 30 year comment. That must have been music to your ears.

    No pain..besides the typical
    No pain..besides the typical body aches! We need to not worry..easier after getting the email from the onc. They dont understand how we grab every comment they make...good or bad! I dwell on things and analyze everything they say and how they say it...not good!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #27
    Annabelle41415 said:

    Ostomy

    Mine was a temporary ilostomy but there are days that I'd wish it was still there.  Agree with the doctor 30 years vs. 2 sounds like a lot more living to do.  My husband was never put off by it either.  Hope that all continues to go well and he doesn't stress about the ostomy - it's just a new normal.

    Kim

    Tans, my oncologist gave me

    Tans, my oncologist gave me the script for cimitidine (we have to have prescription for it in Canada.   When he put me on Avastin he never brought up the cimitidine, I didn't either .... he doesn't really know much about the cc/cimetidine research.   Anyhow,  I've noticed if I take above the prescribed dose I get achey muscles in my shoulders,  one day it literally felt like I had done a workout with bench press the day before .... has your wife ever experienced anything like this, muscle or joint pain from high doses of cimitidine?

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #28
    smokeyjoe said:

    Tans, my oncologist gave me

    Tans, my oncologist gave me the script for cimitidine (we have to have prescription for it in Canada.   When he put me on Avastin he never brought up the cimitidine, I didn't either .... he doesn't really know much about the cc/cimetidine research.   Anyhow,  I've noticed if I take above the prescribed dose I get achey muscles in my shoulders,  one day it literally felt like I had done a workout with bench press the day before .... has your wife ever experienced anything like this, muscle or joint pain from high doses of cimitidine?

    What dosage are you on?
    What dosage are you on?
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #29
    Chelsea71 said:

    What dosage are you on?
    What dosage are you on?

    If you're asking me 800

    If you're asking me 800 mg/day  .... two in the morning and two at night ....  I thought I'd just up it by one pill for a couple of days and that's when I noticed that pain....dropped back  and pain went away .... weird/ don't know if it's a connection or just a co-incidence. 

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #30
    smokeyjoe said:

    If you're asking me 800

    If you're asking me 800 mg/day  .... two in the morning and two at night ....  I thought I'd just up it by one pill for a couple of days and that's when I noticed that pain....dropped back  and pain went away .... weird/ don't know if it's a connection or just a co-incidence. 

    I would like Steve to take
    I would like Steve to take it. Crossed the border and purchased some in New York State. The back of the bottle made mention about telling your doctor if you are on blood thinners prior to taking it. (must thin the blood, as well). Steve has had such a time of it lately with blood clots etc. He developed a spontaneous hematoma due to his blood being too thin. The last thing we want is another hematoma. If I mention it to the onc I know she will tell me that it's not worth the risk. Am very reluctant to try it. He may have surgery in June. Not sure what to do.

    Chelsea
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #31
    Chelsea71 said:

    I would like Steve to take
    I would like Steve to take it. Crossed the border and purchased some in New York State. The back of the bottle made mention about telling your doctor if you are on blood thinners prior to taking it. (must thin the blood, as well). Steve has had such a time of it lately with blood clots etc. He developed a spontaneous hematoma due to his blood being too thin. The last thing we want is another hematoma. If I mention it to the onc I know she will tell me that it's not worth the risk. Am very reluctant to try it. He may have surgery in June. Not sure what to do.

    Chelsea

    Hmmm! Well I assume they
    Hmmm! Well I assume they stop the blood thinners before surgery? Im going to ask our doc about it and will post her reply! Thanks chelsea!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #32
    jen2012 said:

    Hmmm! Well I assume they
    Hmmm! Well I assume they stop the blood thinners before surgery? Im going to ask our doc about it and will post her reply! Thanks chelsea!

    I'm on lovenox, have been for

    I'm on lovenox, have been for over two years ......   it may have an effect on oral blood thinners, I don't know.     I find it so odd that you can walk into Walmart and buy cimitidine on the shelf  but in Canada you need a prescription for it.   

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #33
    Chelsea71 said:

    I would like Steve to take
    I would like Steve to take it. Crossed the border and purchased some in New York State. The back of the bottle made mention about telling your doctor if you are on blood thinners prior to taking it. (must thin the blood, as well). Steve has had such a time of it lately with blood clots etc. He developed a spontaneous hematoma due to his blood being too thin. The last thing we want is another hematoma. If I mention it to the onc I know she will tell me that it's not worth the risk. Am very reluctant to try it. He may have surgery in June. Not sure what to do.

    Chelsea

    Onc just emailed back and

    Onc just emailed back and said the pharmacist wants to look over the chart further, but her first reaction is that she doesn't see a problem.  Maybe you can just ask Steve's doctor about it...without bringing up the warning.    Thinking about it, I would guess that most medications (in the US anyhow!) say to talk to your doctor before taking if you are on blood thinners, blood pressure meds, have diabetes, heart disease, ever stubbed a toe, etc!  We are really sue happy here so they want to make sure to cover all bases.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #34
    smokeyjoe said:

    I'm on lovenox, have been for

    I'm on lovenox, have been for over two years ......   it may have an effect on oral blood thinners, I don't know.     I find it so odd that you can walk into Walmart and buy cimitidine on the shelf  but in Canada you need a prescription for it.   

    It is weird. That's exactly
    It is weird. That's exactly what I did, got it at good old Walmart. You wouldn't believe how much cheaper prescription meds are over there. We save a fortune on groceries and gas, as well.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #35
    smokeyjoe said:

    I'm on lovenox, have been for

    I'm on lovenox, have been for over two years ......   it may have an effect on oral blood thinners, I don't know.     I find it so odd that you can walk into Walmart and buy cimitidine on the shelf  but in Canada you need a prescription for it.   

    It is weird. That's exactly
    It is weird. That's exactly what I did, got it at good old Walmart. You wouldn't believe how much cheaper prescription meds are over there. We save a fortune on groceries and gas, as well.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #36
    jen2012 said:

    Onc just emailed back and

    Onc just emailed back and said the pharmacist wants to look over the chart further, but her first reaction is that she doesn't see a problem.  Maybe you can just ask Steve's doctor about it...without bringing up the warning.    Thinking about it, I would guess that most medications (in the US anyhow!) say to talk to your doctor before taking if you are on blood thinners, blood pressure meds, have diabetes, heart disease, ever stubbed a toe, etc!  We are really sue happy here so they want to make sure to cover all bases.

    Thanks for the info. Yeah,
    Thanks for the info. Yeah, they are likely just being overly cautious and covering their ****. However, Steve has the craziest things go wrong with him. If someone was going to have an unusual side affect it would be him. If a hematoma developed before surgery, I'm sure he would not end up getting surgery. I'll ask the onc and weigh out the risks vs. benefits.

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