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FYI-Long term side effects after treatment

qv62
Posts: 341
Joined: Nov 2012

Forgive me if this link doesn't work, I am not all that technical, I am hoping to attend  and thought of all of you so I wanted to share it

http://www.mskcc.org/events/support-meeting/addressing-long-term-side-effects-after-treatment-anal?dtstart=1381354200&dtend=1381359600

Marynb
Posts: 1134
Joined: Aug 2012

It sounds like you will get some good information! I have never seen anything like this! I hope you can go and share the info with us!

pializ
Posts: 308
Joined: Nov 2012

I look forward to your update. It sounds as if it could be informative. I hope they are looking at how they can help those of us suffering from a range of side effects from the only treatment currently available.

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

Thank you SO much for posting this!  I hope you will get to go and then share the information with all of us here.  I am going to post this link on my other websites.  Thanks again!

eihtak
Posts: 887
Joined: Oct 2011

Thank you, I wish there were a way we could all go together! Hopefully it will go well and we will see more meetings addressing this throughout the country.

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I am planning to go to this event also and am so glad they are doing it. I don't know the other doctor but Dr. Carter is my Women's Health Psychologist and she is amazing.

Hope to see you there!

eihtak
Posts: 887
Joined: Oct 2011

This is so exciting, I can't wait for you both to up-date us!

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I'm so glad to hear you're attending and that you two will get to meet in person!  How exciting.  I hope this event will be very informative.

qv62
Posts: 341
Joined: Nov 2012

I am so glad you are attending, can't wait to see you again !

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I am so glad they are doing this. I wonder how many people will show up and if any of them even know about this board?

See you soon!

Sandy

qv62
Posts: 341
Joined: Nov 2012

It would be wonderful if everyone was close enough to attend but hopefully between Sandy and I we can report back the key facts of the lecture, I will take notes for sure, we need more of these type s of information seminars, @ Sandy, yes Dr. Carter is fabulous and I don't know the other physician either but I see she is a member of the radiological oncologists in the city, my radiological oncologist works out of the LI facility but meets with the city physicians weekly, she is the one that actually sent me to Dr. Carter

qv62
Posts: 341
Joined: Nov 2012

Don't know if ther will be a Q & A but if there is. let us know what we can inquire about for you

LaCh
Posts: 537
Joined: Dec 2012

Well, that'll show me!  Here I stayed away from this website for the last 7 months or so and managed to stumble back just in time to see this post.  Called and registered. Am now good to go.  As I posted elsewhere, my disease is cured but the cure is now the diesase.  Am looking forward to this talk.  Thanks for posting!!

Marynb
Posts: 1134
Joined: Aug 2012

Wow! Good for you that you are CURED!! That is really great!!!!

LaCh
Posts: 537
Joined: Dec 2012

Thank you... Laughing

qv62
Posts: 341
Joined: Nov 2012

So glad you saw the post and can attend ! That makes 3 of us from the board so far, hope these last month have been managable for you, hope we can meet up there.

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I'm glad to see you back here and even happier that you are going to the seminar!

LaCh
Posts: 537
Joined: Dec 2012

thanks mp but I'm not really back....  I just dropped in by chance, but I don't plan to stay. Check in from time to time.... maybe.... or maybe not....dunno.  I never planned to stay beyond my treatments; this was an experience like any other, but it's done, over and isn't who I am.  I'll check in maybe, but it's largely in my rear view mirror. In any case, I appreciate the sentiment.... so thank you.

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I received the following e-mail from the HPV and Anal Cancer Foundation regarding the upcoming seminar, which I wanted to pass on, especially those who are planning to attend. The informal gathering with the Almada's would be very interesting and I hope some or all of you can attend that as well.

We warmly invite all survivors to the first ever forum dedicated to addressing the side effects and quality-of-life concerns that occur after treatment for anal cancer. The Foundation is co-sponsoring this educational meeting with Memorial Sloan-Kettering Cancer Center (MSKCC). A panel of experts and survivors will focus on sexual function and management of long-term side effects resulting from radiation therapy.

Addressing Long-Term Side Effects After Treatment for Anal Cancer
Educational Support Meeting for Anal Cancer Survivors

Wednesday, October 9, 2013
5:30 PM

417 East 68th Street, Room ZRC-136
(between 1st & York Avenues), New York City

Leading the event will be Dr. Karyn A. Goodman, Associate Attending in the Radiation Oncology Department, and Dr. Jeanne Carter, Head of Female Sexual Medicine and Women’s Health programs, at MSKCC. The HPV and Anal Cancer Foundation’s Executive Director, Justine Almada, as well as three survivors will also speak at the event.

There will be an opportunity for questions following the panel discussion. The event is open to all anal cancer survivors and their families.

MSKCC has requested that all guests register beforehand. Please RSVP to 646-888-4740 or e-mail RLAC@mskcc.org.

We hope you can be part of this historic gathering of anal cancer survivors. After the program, the HPV and Anal Cancer Foundation will informally gather with survivors at a nearby café.

For a copy of a flyer to distribute, click here. We look forward to seeing you there!

Justine Almada
Executive Director

qv62
Posts: 341
Joined: Nov 2012

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 ?

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

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
Posts: 537
Joined: Dec 2012

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's picture
sephie
Posts: 544
Joined: Apr 2009

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 .....

LaCh
Posts: 537
Joined: Dec 2012

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

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

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

Lorikat's picture
Lorikat
Posts: 566
Joined: Jul 2011

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

 

qv62
Posts: 341
Joined: Nov 2012

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
Posts: 341
Joined: Nov 2012

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
Posts: 537
Joined: Dec 2012

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's picture
Lorikat
Posts: 566
Joined: Jul 2011

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

lorikat

LaCh
Posts: 537
Joined: Dec 2012

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
Posts: 341
Joined: Nov 2012

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
Posts: 341
Joined: Nov 2012

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
Posts: 887
Joined: Oct 2011

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
Posts: 341
Joined: Nov 2012

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's picture
Lorikat
Posts: 566
Joined: Jul 2011

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
Posts: 341
Joined: Nov 2012

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's picture
Lorikat
Posts: 566
Joined: Jul 2011

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

 

qv62
Posts: 341
Joined: Nov 2012

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's picture
Lorikat
Posts: 566
Joined: Jul 2011

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

thanks!

 

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

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

Lorikat's picture
Lorikat
Posts: 566
Joined: Jul 2011

I wish I lived closer too.  Or even better, had doctors here!  Oh well....

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