FYI-Long term side effects after treatment

2

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #22
    qv62 said:

    mp327

    I recieved the same e-mail today, this is the seminar that both Sandy and I are attending, from a previous post it appears LaCh will also be there, anyone else that you know of ?

    qv62

    I am not aware of anyone else attending other than you three, but we will be well-represented!  I wish I could be there!

  • LaCh
    LaCh Member Posts: 557
    #23
    mp327 said:

    qv62

    I am not aware of anyone else attending other than you three, but we will be well-represented!  I wish I could be there!

    dunno

    I'm registered to go but need to ascertain if the panel is primarily going to discuss women's sexual function post treatment, in which case, I'd not attend since this isn't relevant for me. (The flyer is unclear). I'll find out before next week.

  • sephie
    sephie Member Posts: 650 Member
    #24
    LaCh said:

    dunno

    I'm registered to go but need to ascertain if the panel is primarily going to discuss women's sexual function post treatment, in which case, I'd not attend since this isn't relevant for me. (The flyer is unclear). I'll find out before next week.

    side effects

    lach,,,  i can not go but would love to.... i feel pretty sure that they would discuss bleeding and pain after radiation , not just the fact that the vagina closes up.....hip pain, etc.....   go anyway, so we can hear your synopsis of the info......sephie.....give your dog a big hug .....

  • Lorikat
    Lorikat Member Posts: 681 Member
    #25
    sandysp said:

    Great

    I hope you recognize me. Please, if you do and you feel like it, come up to me. I would love to meet you.

    Sincerely,

    Sandy

    Sandy...

    I would hop a plane and attend myself if I were not such a chicken!  I've never been to New York, wouldn't know where to stay or how to get around!  Is the seminar in a hotel where I could stay?  Out here in the "bad lands" of New Mexico, we all drive our own cars and traffic is easily manipulated...  I've been in and through Dallas, Houston, Los Angeles, Chicago but New York intimidates me!

    lorikat

     

  • LaCh
    LaCh Member Posts: 557
    #26
    sephie said:

    side effects

    lach,,,  i can not go but would love to.... i feel pretty sure that they would discuss bleeding and pain after radiation , not just the fact that the vagina closes up.....hip pain, etc.....   go anyway, so we can hear your synopsis of the info......sephie.....give your dog a big hug .....

    <smile> yeah, no, whatever it is, it wouldn't apply. I'm hoping it's a more general talk.

  • qv62
    qv62 Member Posts: 434 Member
    #27
    Lorikat said:

    Sandy...

    I would hop a plane and attend myself if I were not such a chicken!  I've never been to New York, wouldn't know where to stay or how to get around!  Is the seminar in a hotel where I could stay?  Out here in the "bad lands" of New Mexico, we all drive our own cars and traffic is easily manipulated...  I've been in and through Dallas, Houston, Los Angeles, Chicago but New York intimidates me!

    lorikat

     

    Lorikat

    The seminar is being held at one of the MSKCC offices, it is the upper eas side a very desirable and safe area, there are plenty of hotels as well, don't let NYC intimidate you, it is one of the friendliest and easy to navigate cities ever, I have not been to LA or Dallas but have been to Houston and Chicago and can assure you you would love it here, I hope you think about it, Sandy and I apre both patients of one of the key speakers and can tel you is not only very good at what she does but she is also a wealth of information, please don't hesitate to ask any other questions, I am happy to help

  • qv62
    qv62 Member Posts: 434 Member
    #28
    Lorikat said:

    Sandy...

    I would hop a plane and attend myself if I were not such a chicken!  I've never been to New York, wouldn't know where to stay or how to get around!  Is the seminar in a hotel where I could stay?  Out here in the "bad lands" of New Mexico, we all drive our own cars and traffic is easily manipulated...  I've been in and through Dallas, Houston, Los Angeles, Chicago but New York intimidates me!

    lorikat

     

    Lorikat

    The seminar is being held at one of the MSKCC offices, it is the upper eas side a very desirable and safe area, there are plenty of hotels as well, don't let NYC intimidate you, it is one of the friendliest and easy to navigate cities ever, I have not been to LA or Dallas but have been to Houston and Chicago and can assure you you would love it here, I hope you think about it, Sandy and I apre both patients of one of the key speakers and can tel you is not only very good at what she does but she is also a wealth of information, please don't hesitate to ask any other questions, I am happy to help

  • LaCh
    LaCh Member Posts: 557
    #29
    Lorikat said:

    Sandy...

    I would hop a plane and attend myself if I were not such a chicken!  I've never been to New York, wouldn't know where to stay or how to get around!  Is the seminar in a hotel where I could stay?  Out here in the "bad lands" of New Mexico, we all drive our own cars and traffic is easily manipulated...  I've been in and through Dallas, Houston, Los Angeles, Chicago but New York intimidates me!

    lorikat

     

    Lorikat...dunno but

    You can catch a flight to LaGuardia; the cab or shuttle bus ride is very fast (because it's very close). As far as hotels go, NYC is notoriously expensive and this time of year, there are a lot of tourists that snatch up the rooms. There's a Ronald McDonald House very close to Sloan Kettering. I don't know what their policy is, or they'd be willing to help you out, but you can call them if you want. Maybe if they have room for you, you can ask them if they'd be willig to let you stay, even though it's not primarily what they do.




    • Ronald McDonald House New York

      405 East 73 Street

      NY, NY 10021

      (212) 639-0100


       



     

     
  • Lorikat
    Lorikat Member Posts: 681 Member
    #30
    LaCh said:

    Lorikat...dunno but

    You can catch a flight to LaGuardia; the cab or shuttle bus ride is very fast (because it's very close). As far as hotels go, NYC is notoriously expensive and this time of year, there are a lot of tourists that snatch up the rooms. There's a Ronald McDonald House very close to Sloan Kettering. I don't know what their policy is, or they'd be willing to help you out, but you can call them if you want. Maybe if they have room for you, you can ask them if they'd be willig to let you stay, even though it's not primarily what they do.




    • Ronald McDonald House New York

      405 East 73 Street

      NY, NY 10021

      (212) 639-0100


       



     

     
    Ok...  I'm registered!  If I

    Ok...  I'm registered!  If I get lost I'm calling for help!

    lorikat

  • LaCh
    LaCh Member Posts: 557
    #31
    Lorikat said:

    Ok...  I'm registered!  If I

    Ok...  I'm registered!  If I get lost I'm calling for help!

    lorikat

    it's big but

    It's New York, it's big but extremely hard to get lost, in Manhattan anyway which is where you'll be.  Sloan Kettering is on York Avenue. If you're already in Manhattan and you get in a cab, tell the driver Sloan Kettering, and if that doesn't work, just tell im York Avenue and 68th Street.  There are several hospitals all in a small, 5 block area, so it's swarming with people; there's no way you won't find it, or find someone to ask for directions.  I tip my hat to you. I wouldn't go even if it were in Brooklyn; I'm going because I live a few blocks up; a five-minute walk, but otherwise? Never. I'd never be that motivated.  Anyway, I guess you'll get to see New Yawk, if that's yer cuppa tea. 

  • qv62
    qv62 Member Posts: 434 Member
    #32
    Lorikat said:

    Ok...  I'm registered!  If I

    Ok...  I'm registered!  If I get lost I'm calling for help!

    lorikat

    Lorikat

    Hope you are attending, just want to make sure you know the address is 417 E 68th st between York and 1st, it is considered th Zuckerman Research Center of MSKCC, if you are looking for a hotel try hotwire or hotels.com as they often have last minute discounts on rooms that are not filled, your best bet may be a Marriott (there are many) but let us know what you find, happy to help with any info, keep us posted

  • qv62
    qv62 Member Posts: 434 Member
    #33
    change of location

    Hoffman Auditorium

    1275 York Ave (bet. 67th & 68th Street)

    Room C-186

     


    Please call 646-888-4740 or email RLAC@mskcc.org to register
    please note the location has been changed again
  • eihtak
    eihtak Member Posts: 1,473 Member
    #34
    qv62 said:

    change of location

    Hoffman Auditorium

    1275 York Ave (bet. 67th & 68th Street)

    Room C-186

     


    Please call 646-888-4740 or email RLAC@mskcc.org to register
    please note the location has been changed again
    I'm jealous.....

    You guys are all making me jealous right now. Not only would I LOVE to see New York, I'd like to attend the meeting, but between school, family, and the fact that I'm pretty broke right now it's not an option at this time. Hope its well worth it and maybe you can connect with each other.

    Travel safe, if it pertains!!

  • qv62
    qv62 Member Posts: 434 Member
    #35
    eihtak said:

    I'm jealous.....

    You guys are all making me jealous right now. Not only would I LOVE to see New York, I'd like to attend the meeting, but between school, family, and the fact that I'm pretty broke right now it's not an option at this time. Hope its well worth it and maybe you can connect with each other.

    Travel safe, if it pertains!!

    eihtak

    we wish you could come too, we will keep you posted and informed, if we hear of another one  we will let you know !

  • Lorikat
    Lorikat Member Posts: 681 Member
    #36
    qv62 said:

    change of location

    Hoffman Auditorium

    1275 York Ave (bet. 67th & 68th Street)

    Room C-186

     


    Please call 646-888-4740 or email RLAC@mskcc.org to register
    please note the location has been changed again
    Chicken!!

    Ok.  I'm a chicken.  Afraid to travel that far alone.  I thought maybe my daughter could go with me, forgetting this is the first of he fiscal year...   Too many residual side effects from chemo/radiation.  I am sad because I would love to ask if there a time the Neuropothy goes away and I can sleep without burning feet!  If I will ever be able to comfortably travel again without fear of the "poo sneak attact".....   Y'all know what I mean!  Please let us know what you find out.  I would love to see New York...

     

  • qv62
    qv62 Member Posts: 434 Member
    #37
    Lorikat said:

    Chicken!!

    Ok.  I'm a chicken.  Afraid to travel that far alone.  I thought maybe my daughter could go with me, forgetting this is the first of he fiscal year...   Too many residual side effects from chemo/radiation.  I am sad because I would love to ask if there a time the Neuropothy goes away and I can sleep without burning feet!  If I will ever be able to comfortably travel again without fear of the "poo sneak attact".....   Y'all know what I mean!  Please let us know what you find out.  I would love to see New York...

     

    Lorikat

    Sorry you won't be joining us, we will do our best to gather as much info as we can, as for the sneak attacks, have you had any PT for pelvic floor strengthening ?

  • Lorikat
    Lorikat Member Posts: 681 Member
    #38
    qv62 said:

    Lorikat

    Sorry you won't be joining us, we will do our best to gather as much info as we can, as for the sneak attacks, have you had any PT for pelvic floor strengthening ?

    No I havent.  Not sure I

    No I havent.  Not sure I could find such around here.

     

  • qv62
    qv62 Member Posts: 434 Member
    #39
    Lorikat said:

    No I havent.  Not sure I

    No I havent.  Not sure I could find such around here.

     

    Lorikat

    I was recommended to go after multiple surgeries since my sphincter was not cooperating, I was at my wits end until I did the PT, I did have to go 3x a week for a while and then 2x s week, I was in PT for three months but the results were amazing. It was like looking for a needle in a haystack unless I wanted to commute to the city, which would be a big trip  for several times a week. I did some networking and found one about 15 minutes away, it was a life changing experience, don't rule it out

  • Lorikat
    Lorikat Member Posts: 681 Member
    #40
    qv62 said:

    Lorikat

    I was recommended to go after multiple surgeries since my sphincter was not cooperating, I was at my wits end until I did the PT, I did have to go 3x a week for a while and then 2x s week, I was in PT for three months but the results were amazing. It was like looking for a needle in a haystack unless I wanted to commute to the city, which would be a big trip  for several times a week. I did some networking and found one about 15 minutes away, it was a life changing experience, don't rule it out

    Ok, I won't rule out and I'll

    Ok, I won't rule out and I'll start researching!

    thanks!

     

  • sandysp
    sandysp Member Posts: 868 Member
    #41
    Lorikat said:

    Ok, I won't rule out and I'll

    Ok, I won't rule out and I'll start researching!

    thanks!

     

    QV62 is right on

    The PT for Pelvic Floor Strenghtening was a life savor for me.

    Naproxen (Aleve) helps me when I have the burning feet syndrome but I also take Lyrica which is pefect for Neuropathy issues like burning and tingling.

    Good luck. Remember that a lot of these issues are normal for cancer survivors such as ourselves. We have to ask for help until we find it.

    I wish you lived closer to MD Anderson.

    All the best,

    Sandy

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