"NED"?

[Lise Nadeau]

Hi  I have a question about when people say NED ( no evidence of cancer).  I understand that it "means" cancer is not found on the ctscan...but I guess I am wondering how many of you have gotten tthere with:

 

* NED with treatment, no surgery

* NED with surgery only

* NED with surgery and Treatment?

 

 If I could ask what was the course of thereapy ( protocols)  that got you to that awesome stage of NED?!!)

My question might shed some light for my own knowldege and to absorbe some information I received as a 2nd opinion.

I am not giving up... but I think I need to take my head ouf of the sand and take a reality check and assess my situation to modify some lifestyle choices.

There are allot of things I want to do and Travelling is one.  So I need to decide if going live in a city I don't know to undergo "clinical trials" is something I want to spend "time" doing.  Or do I want to "enjoy" my life fully still not giving hope.. everything is possible.

I am keeping my positive outlook that I will laugh at this medical anomalie called LMS one day in the face...but with a pinch of realism that I need to live my life and not "wait" for the "miracle of life to happen".... I have to live to life to make it called a miracle.

If that makes sense?

I hope I don't offend anyone with this email.  I would VERY MUCH appreciate feedback in regards to the 3 posibilities of NED.

 

All I know for sure.... is that yes ONE day I too shall leave this planet.  Just not ready for it to be in the time frame "they" have given me.

I am telling "cancer to F-OFF.... and  choosing life.

 

Lise surgery- undergoing all protocols treatment and Not NED YET!!!

[Holly Starks]

I can tell you my deal. I was diagonsed with LMS in 2008...totally unbelievable when they told me. I had hi-grade tumor 6lbs in my uterus....go figure,, well I had a radical hyster....oh I forgot,,,they did not tell me that I had LMS until two weeks after the operation.....AND I AM A VETERAN....SO...anyways let me be nice....had the operation at the VAMC in Los Angeles....so.....after two weeks...they told me LMS....stuck me in a room with a tape and machine and told me to watch the movie about chemo and radiation....well I did alot of research and could not believe I had this LMS...the more I did research the more I was trippin.....so I figure if they got the tumor out...why do I need radiation and chemo...your going to sap my good cells,,,,so I refuse the treatment and decided to have a sit and wait deal and not think about it and not claim it.....so I resume my exercise and juicing....so I am still in remission or NED.....I just dont think about it in my mind...and if it should return..well then I will deal with it....I know that may be harsh..but that is what I did.......and so far I do have my Cscans and PScans but I need to find a LMS cancer clinic here in Florida and I am a Veteran so thank God I do not have to pay for anything...my Veteran  benefits cover it.....

Holly

---

From: Lise Nadeau <lbad...@gmail.com>
To: nlmsf <nl...@googlegroups.com>
Sent: Saturday, September 22, 2012 8:35 AM
Subject: [NLMSF] "NED"?

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[Bonnie]

Holly, My story is much like many other women's. I went in for a "routine" hysterectomy for other health issues. I was very lucky because my surgeon didn't cut into my uterus but took it out in 1 piece. I was also very lucky because my pathologist knew exactly what she was looking at & diagnosed me correctly. My blessings continued because my tumor was only 2.8 cms & fully encapsulated in a tennis ball size fibroid tumor. It had not touched the uterine wall & had no blood supply. The reasons my oncologist gave for recommending chemo was that my tumor had necrotic margins & had a high cell count. I had 2 rounds of chemo (1 round =week 1 gemzar, week 2 gemzar/taxotere, week 3 no meds). I had to stop because the chemo was too toxic for my body to withstand. The chemo, in my case, was done as "a just in case" type measure. Just in case there are a few cancer cells floating around in your body we will kill them now before they have a chance to take hold & grow. Hind sight is 20/20, so I can't say if I had to do it over again if I would do the chemo again or not. I don't know if the chemo killed off a free floating cancer cell or not. All I can do is continue to get my scans & pray I stay dancing with NED. There are many protocols & it seems like each oncologist seems to have their preferences. I can only suggest you find the best LMS or sarcoma specialist in your area. One you like & trust. And work with them. Keep talking to us, cause I've heard of protocols on here that I haven't heard of anywhere else.  Prayers & hugs, LaVon      

[Holly Starks]

Hi Bonnie.

Great story I will be my sword high and ready to do the dragon in Bonnie...I will keep plugging forward...praying for you as well as the others with LMS on this site

---

From: Bonnie <les...@gmail.com>
To: nl...@googlegroups.com
Sent: Saturday, September 22, 2012 10:22 PM
Subject: [NLMSF] Re: "NED"?

Holly, My story is much like many other women's. I went in for a "routine" hysterectomy for other health issues. I was very lucky because my surgeon didn't cut into my uterus but took it out in 1 piece. I was also very lucky because my pathologist knew exactly what she was looking at & diagnosed me correctly. My blessings continued because my tumor was only 2.8 cms & fully encapsulated in a tennis ball size fibroid tumor. It had not touched the uterine wall & had no blood supply. The reasons my oncologist gave for recommending chemo was that my tumor had necrotic margins & had a high cell count. I had 2 rounds of chemo (1 round =week 1 gemzar, week 2 gemzar/taxotere, week 3 no meds). I had to stop because the chemo was too toxic for my body to withstand. The chemo, in my case, was done as "a just in case" type measure. Just in case there are a few cancer cells floating around in your body we will kill them now before they have a chance to take hold & grow. Hind sight is 20/20, so I can't say if I had to do it over again if I would do the chemo again or not. I don't know if the chemo killed off a free floating cancer cell or not. All I can do is continue to get my scans & pray I stay dancing with NED. There are many protocols & it seems like each oncologist seems to have their preferences. I can only suggest you find the best LMS or sarcoma specialist in your area. One you like & trust. And work with them. Keep talking to us, cause I've heard of protocols on here that I haven't heard of anywhere else.  Prayers & hugs, LaVon      

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[Jane Moulds]

My 7 cm tumor was on my left pelvic side wall and wrapped around my ureter.  I had surgery, and radiation 13 1/2 years ago.  NED ever since.  Several scares, but clear.  I decided to travel and start cruising, I had never been on a cruise, but had always wanted to go, now I have been on 15 and loved every minute of it.  Remember one day at a time and enjoy each one!

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Love Hugs Thoughts and Prayers

Jane AL

13 Year LMS Survivor


 

[Paula Zmuda]

Hi, Lise,    My story is similar to others...had total hysterectomy and there were fibroids in the uterus which upon examination at least one had LMS. I wasnt told how many fibroids had the LMS, only that it was present. Found out about two weeks after surgery, maybe because the surgeon sent my slides to Massachusetts General for second opinion, which was confirmed. I did not undergo chemo nor radiation at that time because the fibroids were all in the uterus, but I wish I had done it then because about two years later (when I thought I was NED) a tumor showed up where the uterus had been. That tumor was removed, but within a month another tumor in the same place was growing. By the time the surgeon and the radiation doc finished fighting about who was going (or not going) to do something about it, the tumor had grown to 17 cm. I found a different surgeon on my own, and had another surgery. After 6 weeks, I had 35 radiation treatments (25 and 10 boosts), and then last February began chemo. I had many major side effects from the chemo, the neulasta shot for "prevention" was the first bad one. I could hardly take 20 steps at a time before i had to sit down, and there was alot of bone pain in my hips and upper thighs. Chemo was suspended for two months, then started up again for round 4,5 and 6...I never made round six because I began to have blood issues (low hemoglobin counts) and kidney failure. I was in the hospital for 10 days in July, had plasma apharesis because it was felt that I had developed a rare blood disorder called TTP. So I had a temporary catheter installed in my neck, then when it was decided that I would need to continue the apharesis treatments, a more permanent (Quentin) catheter was installed into my upper left chest area. My numbers have improved enough that I dont at the present time need the apharesis, but the doctors are just now deciding what they want me to do for now...weekly blood tests to monitor kidney and blood performance, and weekly flushing of the catheter.    So it looks like I fall into the "surgery and treatments" category, but as for NED, not certain, tho they tell me my ct scans look good, at the same time they can't be certain because I cant have the IV contrast (because my kidneys are still in a healing lprocess and they shouldn't be strained unless absolutely necessary at the present time) so the radiologists are stating that they cant get a good picture without the contrast.  Also, have a new nodule at the base of right lung, so they are watching that to see if it gets bigger. don't even know if that is LMS or not, but probably is...so no NED for me yet. Take Care, Paula ULMS 09 --- On Sun, 9/23/12, Jane Moulds <djmo...@gmail.com> wrote:

[caroline pastor]

Hi Holly, It is so refreshing to hear of a positive case.  In all my time on this site, I have only heard of two semi long time survivors.  Kind of makes you depressed.  My oncologist said that it usually comes back within 2-5 years.  Hopeing for longevity.  It really is depressing, yet knowledgeable to hear of all the reocurrences with this dragon.  Is research getting anywhere?  I try to have such a positive attitude but it is so hard sometimes.  Every little ache or pain, you wonder, is this it?  I would like to hear more positive things, but know the reality.  Hope that makes sense.  I'm going for my 6 month ctscan next week and then to Sloan to hear the results.  It is true that the doctor can usually know the results in a day.  Glad to hear you are doing well.  It just never leaves you though, does it? Linda --- On Sat, 9/22/12, Holly Starks <starks...@yahoo.com> wrote:

From: Holly Starks <starks...@yahoo.com> Subject: Re: [NLMSF] "NED"?

[KAY B.]

My NED came to me after surgery to remove the vaginal tumor in January, 2012. i have had one MRI and 4 CT scans claiming NED.

[Theresa Miller]

YOU GO GIRL!!

Hope - Always,

Theresa

8 year ULMS survivor

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[LaVon Esswein]

Yahoo!!!!!! Time to party!!!!!  Congratulations!!!

On Oct 27, 2012 12:33 PM, "KAY B." <kay.br...@gmail.com> wrote:

My NED came to me after surgery to remove the vaginal tumor in January, 2012. i have had one MRI and 4 CT scans claiming NED.

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[Jane Moulds]

Raise your glass and dance, dance, dance!

[vicky peters]

We pray your dance with NED goes on forever and forever and forever ....... you get the picture, right!

 

God Bless you,

Love, Hope and Prayers,

 

George & Vicky Peters

(NLMSF Chaplain) &( LMS Fight Song singer and co-author)

---

From: KAY B. <kay.br...@gmail.com>
To: nl...@googlegroups.com

Sent: Sat, October 27, 2012 12:33:41 PM
Subject: [NLMSF] "NED"?

My NED came to me after surgery to remove the vaginal tumor in January, 2012. i have had one MRI and 4 CT scans claiming NED.

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[starks...@yahoo.com]

Yoooohooooo our swords will continue to slay

Sent from my HTC smartphone on the Now Network from Sprint!

----- Reply message -----
From: "LaVon Esswein" <les...@gmail.com>
To: <nl...@googlegroups.com>
Subject: [NLMSF] "NED"?
Date: Sat, Oct 27, 2012 2:27 pm

Yahoo!!!!!! Time to party!!!!!  Congratulations!!!

On Oct 27, 2012 12:33 PM, "KAY B." <kay.br...@gmail.com> wrote:

My NED came to me after surgery to remove the vaginal tumor in January, 2012. i have had one MRI and 4 CT scans claiming NED.

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[Annette Atkisson]

Hi Kay,

That is amazing news! Thanks for sharing! We love to hear good things!!! God Bless.

Sincerely,

Annette Atkisson

annette...@gmail.com

 

 

 

 

 

On Sat, Oct 27, 2012 at 9:33 AM, KAY B. <kay.br...@gmail.com> wrote:

My NED came to me after surgery to remove the vaginal tumor in January, 2012. i have had one MRI and 4 CT scans claiming NED.

[Tina Rasmusson]

 

 

Holly,  39 yrs old I was diagnosed with LMS on 8-24-12 that metasized to my lungs, 1st lung biopsy 8-28-12, had Uterine artery embolizm 9-29-11 to shrink the fibroid, anywho, had a jet ski accident this summer and they found multiple nodules on my right lung, a few they could see on the left lung,2nd lung biopsy confirmed Oct 1st LMS had a full hysterectomy and another fibroid was in my uterus, no pathology results from the uterus as it was dead. I am doing Gemcitabine and Docetaxel now, only round 2 and it is kicking my Butt... I was told I could live 1yr to 5 yrs depending on treatment, No Lung Transplant for me or surgery not an option in my case? HELP what is Juicing and honestly does this really really work... what do i do.. I trust my oncologist with my life we have a great relationship, had gotten a 2nd Opinion? NEED ADVICE!!!! PLEASE

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[Adria B]

Hi Everyone,

 

I don't normally reply all the time, but, I read all of your comments and pray for each of you.

 

I am NED with surgery only.  We shall hope it stays that way, I go back to MD Anderson on 12/4 for my 6 month check up.

 

Most of ya'll know my story...I had LMS in the upper abdomen area, no Uterus to attack!  It was apparently predicted to be "attached" to my pancreas, liver, kidney, aorta and stretching to the vena cava.  It ended up not being attached.

 

I highly recommend MD Anderson to all LMS patients.  I know it may be hard for you to travel to Houston, but, it's worth it.  I give God all the glory, but, He guided the physicians.

 

The more research I do on LMS, the more confused I get...it's just not a cancer that we can say "I know what caused this".  

 

Eat lots of spicy food, green foods, be careful with sugar (even in fruit).  That's my belief.

 

Stay strong, keep up your faith, write about your experience, share it with everyone.  Open a Caringbridge, it's the BEST way to journal and heal.

 

Adria Boyd

https://www.caringbridge.org/visit/adriaboyd

 

Love ya'll! 

-----Original Message-----
From: nl...@googlegroups.com [mailto:nl...@googlegroups.com] On Behalf Of Tina Rasmusson
Sent: Friday, November 09, 2012 10:22 PM
To: nl...@googlegroups.com
Cc: nl...@googlegroups.com; lbad...@gmail.com
Subject: Re: [NLMSF] "NED"?

 

 

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