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Podcast: May 11, 2011: Update on Follicular Lymphoma

CountryGal7557
Posts: 165
Joined: Feb 2011

To Register Go To: http://www.cancercare.org/get_help/tew_calendar.php

there are several podcast to register for.

p.s. tried to make a copy for the Discussion Board "Long-Term Survivors" but it moved the entire post there. oops

allmost60's picture
allmost60
Posts: 3099
Joined: Jul 2010

Wow..I so appreciate this information! I went to the web site and registered and very much looking forward to this event. I added the website to my favorites and will keep checking back for future podcasts they have listed. Everyone here should check this information out! It covers more than just follicular...many subtypes of Lymphoma are listed for podcasts. You are a doll Janelle!!! Love ya...Sue (FNHL-2-3A-6/10)

allmost60's picture
allmost60
Posts: 3099
Joined: Jul 2010

Received this back already...cool! I'm ready to rockin-roll come May 11th!

Dear Susan,

You have registered 1 participant(s) for the following Connect Education Workshop(s):

Wed, May 11, 2011, 1:30 - 2:30 pm ET: Update on Follicular Lymphoma
One week prior to the CancerCare Connect® Connect Education Workshop, you will receive information and instructions on how to join the call. The instructions will include both a toll-free dial-in number that you can use to join the call by phone and a link to live streaming for international participants and others who prefer to listen to the call online. If you do not receive this information one week prior to the program, please email the CancerCare Education Department at: connect@cancercare.org.

Sincerely,

CancerCare Staff

CancerCare, Inc.
275 Seventh Avenue
New York, NY 10001
212-712-8400 or 1-800-813-HOPE (4673)

CancerCare is a 501(c)(3) non-profit organization

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Please post what you learn. I will be at work. Thanks Joanie

CountryGal7557
Posts: 165
Joined: Feb 2011

Sue, So what did you think of the podcast? I tried to write everything down, but I know I missed some things.

overall it felt uplifting to hear the positive enthusiasm that Treanda & Rituxan are very effective together & improve the prolonged life, more than Rituan alone. and to hear again Follicular Lymphoma is being treated as a Chronic Disease, similar to Diabetes and High Blood Pressure. it's treatable.

the only take-away that was new to me, was to ask my oncologist "What is my Flippi score?" and that LDH is used to measure this Flippi score. Did I hear this right?

It was interesting that there were 779 participants on the call. wish they were on this discussion board!

Janelle

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Janelle,
I listened to the pod cast and it was pretty good all in all. Don't be surprised if most of those people that were listening read the post but never post anything.We have had a few respond and say they read the post daily,but have never posted anything.They ask a question and get a lot of answers. We never hear from them again. I have been here a year this month and seen so many come and go. The Bentamustine(sp) thing was interesting in that they made it sound like they were going with that more and more along with the Rituxan and gradually phasing out the Chop. The chop is a harsh thing to have to deal with.I had the R-CVP and that was no picnic either. John(FNHL-1-4A-5/10)

CountryGal7557
Posts: 165
Joined: Feb 2011

Hi John, My oncologist told me that he wanted to move away from CHOP because they NOW know how hard that treatment is on the heart. From today's Podcast they also confirmed, if you had CHOP for First Line Treatment (FIT) than you can't have CHOP for a relasp. With Rituxan and Treanda, you can use it a 2nd and 3rd, etc. I know of someone who had CHOP 9 years ago and when it came back one year ago, there was just this one lump and it wasn't anywhere else in his body! so his Oncologist had it surgically removed and he has been on a watch-and-wait ever since. isn't it amazing how different this stuff is for each of us. When I heard about his situation, I asked my Oncologist about this decision as I thought NHL wasn't surgical but he said in this patient's situation it was the best option.

and that is something they also said in today's Podcast, that we must take charge of our own disease. know our options and not be pushed around.

Janelle
(FNHL-1-4A-3/10)

allmost60's picture
allmost60
Posts: 3099
Joined: Jul 2010

Hi Janelle,
I had to go to the hospital this morning at 9:00, so I missed the pod-cast since it came on here at 10:00 a.m. pacific time. My daughter-in-law got discharged this morning so I helped my son with getting mama, Lizzy and all of their flowers and baby stuff home. I'm hoping I can review the pod-cast from archives if they post it on their web site. Haven't had a chance to check into it yet. Love...Sue (FNHL-2-3A-6/10)

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Janelle - can't believe I missed the tele-conference today - had it on my calendar and was home all day so could have listened - bummer! Chemo brain is not kind!

Having just finished Treanda/Rituxan for 6 months, I read with interest all the posts and really wish I'd heard it. Can't ****aine CHOP being any more brutal than T/R was for me but glad to hear they're phasing it out. I was told this year that CHOP's a one time only treatment because of the heart, so good to hear that was confirmed. Hope and pray I never have to do that one- have heard it's more difficult than CVP-R and did that last June - Nov. with little success but few side effects.

Please let us know if there's any way to rehear or read today's Podcast on Follicular - would love to do so. Fran

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Fran,
I have heard the same thing about CHOP being rougher than CVP. I have no doubts it is rough. I was scheduled to take it,but it was changed at the last minute. As a matter of fact it was changed the day I went in for my 1st treatment. I was told because my heart was in the low normal range. I was assured my heart was fine but the chop could cause future problems. The cvp was tough and can only imagine how rough the chop would have been. I did listen to the podcast and felt it pretty good all in all. It would be nice to have it rebroadcast for those that did miss it. John

miss maggie
Posts: 929
Joined: Mar 2010

Hello Fran,

I believe in one month you will be able to hear or read the text at he Lymphoma
site. I usually read it, and save the text to my documents.

I send you my love and prayers always. Maggie

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