Not at Death's Door

beila
beila Member Posts: 97 Member
in Uterine/Endometrial Cancer #1

thank you to the ladies who responded to me. but most only referred to the Remeron issue

 Only one said "you are not at death's door"

Does that mean that the others think I am??

If the weekly Taxol doesnt work, might something else from the chemo armamentarium be effective?

I am afraid to ask my oncologist that question, as I have always come away with a negative vibe

 

Should I go to Sloan Kettering....the problem is my fatigue makes it difficult to go through that process

 

Beila

 

 

 

 

 

 

 

 

Comments

  • doe-sneak
    doe-sneak Member Posts: 2
    #2

    Hi Beila,

    This is my first post on here.  But I was curious about your post because something similar is going on with my mom.  My mom has stage IVB Uterine cancer.  She had a hysterectomy but then developed blood clots and they are now in her lungs and legs.  She's been in the hospital since a week after her surgery fighting for her life with these stupid clots.  The plan for cancer treatment was to get a pet scan, put in a port, start chemo - carbo/taxol.  Well, we never got the pet scan done until yesterday because the pulmonary embolism just about killed her.  And a whole month has gone by and we haven't even talked about cancer treatment.  She is now stable-ish.  Still has clots, blood counts are low, but still stable.  The dr's had my mom on marinol to help increase her appetite and it didn't work.  So they switched to remeron which dissolves under the tongue.  I'm sitting with my mom here in the hospital reading her some of these posts and I asked her what she thought about this new remeron they put her on.  She said it takes several days to start working.  She didn't like that it burned her mouth when she put the pill in (not sure if it's the pill or if it's the fact that she just finished 10 radiation treatments and that burned her mouth).  She just started it 3 days ago so I don't know if we have enough information on it yet to really comment on it.  I would like to keep tabs with you on the topic though.  My mom is super fatigued though but it's not from the remeron.  It's from the blood clots and the high doses of dilaudid for pain from the clots in her legs, and from the hysterectomy.  We just found out two hours ago that the cancer has spread to her bones and lymph nodes in her thoracic.  Not sure if we can even treat the cancer now.  

    As far as your "end of life" question, I don't know.  We have the same questions too.  Do you have any insight on this?  If it goes to the bones, is there anything that can be done?

     

    Danika

  • doe-sneak
    doe-sneak Member Posts: 2
    #3

    Hi Beila,

    This is my first post on here.  But I was curious about your post because something similar is going on with my mom.  My mom has stage IVB Uterine cancer.  She had a hysterectomy but then developed blood clots and they are now in her lungs and legs.  She's been in the hospital since a week after her surgery fighting for her life with these stupid clots.  The plan for cancer treatment was to get a pet scan, put in a port, start chemo - carbo/taxol.  Well, we never got the pet scan done until yesterday because the pulmonary embolism just about killed her.  And a whole month has gone by and we haven't even talked about cancer treatment.  She is now stable-ish.  Still has clots, blood counts are low, but still stable.  The dr's had my mom on marinol to help increase her appetite and it didn't work.  So they switched to remeron which dissolves under the tongue.  I'm sitting with my mom here in the hospital reading her some of these posts and I asked her what she thought about this new remeron they put her on.  She said it takes several days to start working.  She didn't like that it burned her mouth when she put the pill in (not sure if it's the pill or if it's the fact that she just finished 10 radiation treatments and that burned her mouth).  She just started it 3 days ago so I don't know if we have enough information on it yet to really comment on it.  I would like to keep tabs with you on the topic though.  My mom is super fatigued though but it's not from the remeron.  It's from the blood clots and the high doses of dilaudid for pain from the clots in her legs, and from the hysterectomy.  We just found out two hours ago that the cancer has spread to her bones and lymph nodes in her thoracic.  Not sure if we can even treat the cancer now.  

    As far as your "end of life" question, I don't know.  We have the same questions too.  Do you have any insight on this?  If it goes to the bones, is there anything that can be done?

     

    Danika

  • janh_in_ontario
    janh_in_ontario Member Posts: 151 Member
    #4
    We all are

    Beila

    I am so sorry you are going through all this crap... and being alone must double the pain.

    I have no idea what death's door looks like - and in some ways (not to sound cliche) we all are knocking on heaven's doors.  We just have been given a little more notice than some people get. BUT that being said, have you thought about stopping treatments and just enjoying whatever time is left - it might end up to be alot more than you think!  Just a thought... I know it is a touchy subject and all - but if the chemo is not working and you are too fatigued to go to Sloan - what if you took a couple of months to give your body some time to recuperate from the onslaught of chemo it has been through? With renewed strength and a better frame of mind (with the help of Remeron) maybe Sloan would be more successful.

     

    Just my 1 cent worth - and I know we haven't seen eye to eye on the healthcare system of Canada - but I really do hate to see you suffer and if I can help you please feel free to contact me. I am close to you geographically and can help you carry your load.

     

    JanH

  • Alexandra
    Alexandra Member Posts: 1,308
    #5
    janh_in_ontario said:

    We all are

    Beila

    I am so sorry you are going through all this crap... and being alone must double the pain.

    I have no idea what death's door looks like - and in some ways (not to sound cliche) we all are knocking on heaven's doors.  We just have been given a little more notice than some people get. BUT that being said, have you thought about stopping treatments and just enjoying whatever time is left - it might end up to be alot more than you think!  Just a thought... I know it is a touchy subject and all - but if the chemo is not working and you are too fatigued to go to Sloan - what if you took a couple of months to give your body some time to recuperate from the onslaught of chemo it has been through? With renewed strength and a better frame of mind (with the help of Remeron) maybe Sloan would be more successful.

     

    Just my 1 cent worth - and I know we haven't seen eye to eye on the healthcare system of Canada - but I really do hate to see you suffer and if I can help you please feel free to contact me. I am close to you geographically and can help you carry your load.

     

    JanH

    "Death Door"

    Beila - I think you're putting too much stock in what other people say and how they say it. And you let it get to you and upset you. Who cares how many strangers on the internet said or did not say something? They don't know you or your medical history. Who cares if psychiatrist mentioned "end of life"? No one lives forever. From what you're writing about yourself - you feel no symptoms, you swim, you plan a trip to Cuba; it does not sound like someone in late stages. I hope Remeron works for you and in a few weeks you get a more positive outlook.

    Jan - I like your comment about "a little more notice". I never thought of it that way and strangely it gives me the feeling of peace and control. I see from your profile that you go to Sunnybrook. So do I. If you want to compare notes, my number is (905) 960-8043. I live in Maple, ON.

  • Kathy G.
    Kathy G. Member Posts: 244 Member
    #6
    Alexandra said:

    "Death Door"

    Beila - I think you're putting too much stock in what other people say and how they say it. And you let it get to you and upset you. Who cares how many strangers on the internet said or did not say something? They don't know you or your medical history. Who cares if psychiatrist mentioned "end of life"? No one lives forever. From what you're writing about yourself - you feel no symptoms, you swim, you plan a trip to Cuba; it does not sound like someone in late stages. I hope Remeron works for you and in a few weeks you get a more positive outlook.

    Jan - I like your comment about "a little more notice". I never thought of it that way and strangely it gives me the feeling of peace and control. I see from your profile that you go to Sunnybrook. So do I. If you want to compare notes, my number is (905) 960-8043. I live in Maple, ON.

    Beila

    Sorry I overlooked your 2nd concern regarding the remark from the psychiatrist. I don't know how often you see her, but if you go weekly I would bring this up and get clarification of what she was saying. Let her know how YOU interpreted it and the effect it had on you.

    If you don't have an appointment to see her again soon I would call and see if you can discuss this over the phone or make another appointment soon.

    It is hard to determine why this was said (or you heard something like that said) when it is out of context to the rest of your session. Maybe if you were sharing your frustration and fear over your treaments not being successful she was responding to your feelings...not facts, and that is how the comment came about.

    I don't know....

    I don't have a half the experience most of the ladies on this board have to be able to comment on whether you are at death's door or not based on what you are reporting medically and 'socially.' I know it appears you...and some others on here could dance circles around me after or during radiation and chemo whereas I have not had those treatments. I feel good due to changing my diet, but I am still sluggish and require naps.

    And for cripe's sake I am only 56!

    It sounds to me like stress is the culprit here and cancer is in 2nd place.

    Best of luck!

    Kathy

  • NorahS
    NorahS Member Posts: 92
    #7
    Beila about that fatigue...

    I know you are a physician (ER?) and you likely already know this, but I did want to mention that sometimes a bout of extreme fatigue can be offset by a course of steriods.

    Of course, you can't be on daily steroids for too long - I was prescribed 4 mg of dexamethasone (decadron) for 2 weeks and then the dosage was cut to 2 mg for 6 weeks. Took it in the morning with breakfast.  If your oncologist will prescribe for you, then it might give you the energy to go to Sloan-Kettering. Just a thought. 

     

  • beila
    beila Member Posts: 97 Member
    #8
    NorahS said:

    Beila about that fatigue...

    I know you are a physician (ER?) and you likely already know this, but I did want to mention that sometimes a bout of extreme fatigue can be offset by a course of steriods.

    Of course, you can't be on daily steroids for too long - I was prescribed 4 mg of dexamethasone (decadron) for 2 weeks and then the dosage was cut to 2 mg for 6 weeks. Took it in the morning with breakfast.  If your oncologist will prescribe for you, then it might give you the energy to go to Sloan-Kettering. Just a thought. 

     

    Decadron

    Nora

    thank you for the excellent suggestion re decadron and fatigue, and moreover, Sloan Kettering.

    obviously when too fatigued to do important things ( like Sloan, go swimming, go to Cuba), this contributes to the depression, which contributes to the fatigue.

    Actually, at one point my oncologist did mention steroids and I was surprized ( this stuff is not in the purvue (spelling??) of Emergency Medicine!)

     

    Obviously it must have helped you, or you would not be mentioning it

    How about sleep?....I think Ativan would probably deal with that

     

    thanks alot....will keep you posted,

    Beila

     

  • Sisters three
    Sisters three Member Posts: 165 Member
    #9
    hey Beila check out this article

    it is about ways to combat chemo fatigue, there are some fairly easy to follow ideas. See if anything rings a bell with you. 

    www.lifescript.com/.../8_ways_to_fight_the_fatigue_of_chemotherapy_treatment.aspx

     

  • beila
    beila Member Posts: 97 Member
    #10
    janh_in_ontario said:

    We all are

    Beila

    I am so sorry you are going through all this crap... and being alone must double the pain.

    I have no idea what death's door looks like - and in some ways (not to sound cliche) we all are knocking on heaven's doors.  We just have been given a little more notice than some people get. BUT that being said, have you thought about stopping treatments and just enjoying whatever time is left - it might end up to be alot more than you think!  Just a thought... I know it is a touchy subject and all - but if the chemo is not working and you are too fatigued to go to Sloan - what if you took a couple of months to give your body some time to recuperate from the onslaught of chemo it has been through? With renewed strength and a better frame of mind (with the help of Remeron) maybe Sloan would be more successful.

     

    Just my 1 cent worth - and I know we haven't seen eye to eye on the healthcare system of Canada - but I really do hate to see you suffer and if I can help you please feel free to contact me. I am close to you geographically and can help you carry your load.

     

    JanH

    a break from chemo

    thanks JanH for the excellent suggestion....but I would make it a "break" from chemo, not stopping altogether

    The one I am doing now, weekly Taxol is really quite easy except for the increased fatigue

    I like the idea of incorporating this into Nora's suggestion of a course of steroids for the fatigue and then "with renewed strength and better frame of mind"  Sloan-Kettering

    I will not totally stop chemo without trying all options

    I am a doctor and a fighter and there must be SOMETHING that will work for me, if it has worked for others!!

    By the way, I contacted the psychiatrist and she said "end of life" was referring in general, and in no way to me specifically

     

    thanks again,

    Beila

  • beila
    beila Member Posts: 97 Member
    #11
    Sisters three said:

    hey Beila check out this article

    it is about ways to combat chemo fatigue, there are some fairly easy to follow ideas. See if anything rings a bell with you. 

    www.lifescript.com/.../8_ways_to_fight_the_fatigue_of_chemotherapy_treatment.aspx

     

    thanks alot Sisters three

    will check it out now

  • beila
    beila Member Posts: 97 Member
    #12
    beila said:

    thanks alot Sisters three

    will check it out now

    www.lifescript.com.........fatigue Sisters three

    cant find it

    am a dinasoar when it comes to computers

    but I entered it as you wrote it and it said something re wrong entry

    can you help me find it?

  • Sisters three
    Sisters three Member Posts: 165 Member
    #13
    beila said:

    www.lifescript.com.........fatigue Sisters three

    cant find it

    am a dinasoar when it comes to computers

    but I entered it as you wrote it and it said something re wrong entry

    can you help me find it?

    Try this....

    Just search on this website www.lifescript.com  Then when the website pops up type into their search engine  Chemo ffatigue there should be a list of articles below, as always before trying anything ask the good old doctor first but some of the items suggested came from MD Anderson and there are a lot of women on this site that go there.

    Lisa

  • NorahS
    NorahS Member Posts: 92
    #14
    beila said:

    Decadron

    Nora

    thank you for the excellent suggestion re decadron and fatigue, and moreover, Sloan Kettering.

    obviously when too fatigued to do important things ( like Sloan, go swimming, go to Cuba), this contributes to the depression, which contributes to the fatigue.

    Actually, at one point my oncologist did mention steroids and I was surprized ( this stuff is not in the purvue (spelling??) of Emergency Medicine!)

     

    Obviously it must have helped you, or you would not be mentioning it

    How about sleep?....I think Ativan would probably deal with that

     

    thanks alot....will keep you posted,

    Beila

     

    I had no problems sleeping when on steroids...

    ...however, I was advised to take my medication early in the day - at breakfast. This apparently allows sufficient time for the steroid med to 'wear off' before bedtime.  

  • sunflash
    sunflash Member Posts: 197 Member
    #15
    Sisters three said:

    Try this....

    Just search on this website www.lifescript.com  Then when the website pops up type into their search engine  Chemo ffatigue there should be a list of articles below, as always before trying anything ask the good old doctor first but some of the items suggested came from MD Anderson and there are a lot of women on this site that go there.

    Lisa

    Beila, I'm glad you got

    Beila, I'm glad you got clarification on the "end of life" statement. I know that I tend to read more into what my doctor says when I go in for checkups than she intends for me to do.........but knowing that doesn't help. I still try to read between the lines and interpret not only her words but body language and facial expressions too. Ugh!! Going through this is not for the weak!

    I know you're one strong lady and hope you get your fatigue under control. That was my worst side effect while I was going through treatment. Hope you can make it to both New York and a visit to your hubby!

    Hugs! 

  • soromer
    soromer Member Posts: 130
    #16
    CAUTION re steroid use

    The steroids can indeed help one's energy level, but please also keep in mind that they can also lead to terrible constipation. I was THISCLOSE to an obstructed bowel from having an extra day's dose of steroids when I was on chemo in 2011. So, know your body and take precautions to make sure that you don't get stopped up.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #17
    beila

    Happy to hear that you that you are not at deaths door and doing ok right now.  Putting postive thoughts out to the universe for you to respond well to the treatment you are getting. I am not responding to the drug because I do not know anything about it but if possible a second opion could help the fears.  trish

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