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Stage IV Hope

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

I haven't been on here for a while but came here when first diagnosed and loved the support.

I thought this might encourage others. I have been at it for 2 1/2 years. The discovered a recurrence 14 months ago which we treated aggressively with CRS and HIPEC and I am still NED. Quick knock on wood!

I had an MRI and a CT and those radiologists are unable to detect any cancer. I know there are lots of you struggling so I post this as an encouragement to you all to seek out the best therapies to remove the beast.

If it wasn't for the sites like these, I would never have discovered HIPEC or my big city doc.

As some of you can attest, even the best docs don't remember to tell you or know about the best treatments for you. You often have to bring it to them.

There is so much HOPE for stage IV cancer. Hoping to spread some here.

Nedhopesprays

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thank you for sharing your great news and for giving encouragement. :)
Many of us need to hear messages like this on down days. I know there are still options, but it does get tiring. Then your message today made me smile and get ready to start "kicking some cancer butt!"

Thank you and God bless with many more NED years ahead of you!

Lisa

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

Dr Lenz is one of my docs. If you want to chat. Email me at Jenfightscancer@gmail.c*o*m (take the *'s out of the link)

((((big hugs))))

Jennifer

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Jen,

Thanks for posting your great story; it offers hope to me, (+ others I am sure) still hoping to be NED. Congratulations on getting to NED. Your story reminds me of my surgeon's words early on, "you have to be patient". Take good care!

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Jen,

I think/hope I have already told you that you have inspired me in so many ways. Although my treatment has been unending, you provide light for the tunnel. You make it sound so easy, even after "the MOTHER of all surgeries". I know it hasn't been easy. I know you still struggle. Please know how many lives you've touched along the way. YOU are an inspiration.

Thank you for all that you do. Know that you are loved.

Outwit. Outplay. Outlast.

Kimby

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

Love you to Sweetie!

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Even those of us stage 4 folks that are NED need to here this. You make us even more confident that we can continue to beat it.

When I first was DX. I read that for us stage 4 people “the doctors will make you comfortable, but there is no cure.” That web site does not say that anymore. There are too damn many of us stubborn folks out there that just will not consider ourselves the walking dead.

Kerry

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I love youre pic and I see you have a lot to fight for. I'm so happy you won this fight and your story gives others strength to fight on. Keep up the good work..

"Million Cancer Survivors Walk" is on Facebook

Brooks

jams67's picture
jams67
Posts: 927
Joined: May 2006

Come help us hold up our Survivors sign at CP8 in Fort Worth Oct.13-16, probably Thursday night we will gather for dinner and picture.
Jo Ann

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Inspiration like this is always appreciated!

Hoping and praying too! Rob; in Vancouver

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

A friend passed your blog to me a long time ago.

You have been encouraging me too!

So how is that for coincidence.....

Jen

dorookie
Posts: 1736
Joined: Jul 2007

Thank you for sharing, and congradulations!! I just got an ALL CLEAR myself, stage 4 too. Its truly a blessing to be apart of this board..

Did you do the NED naked dance??

Beth

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

Beth,

Congrats yourself!

I did the nekid dance and the goofy, spontaneous giggles all day.

Fight for my love
Posts: 1530
Joined: Jun 2009

Thanks for sharing.Wish you all the best.

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi Jen, thanks for your encouraging words. I have an onc here in our small town and appreciate him for many reasons, one being he has told me he has done all he can do and that he knows what doc at UCSF he wants to see me now. As my son said, I'm moving on up to the big leagues! It is scary, yet I am excited to see what is ahead! I have never been NED but have been in a long holding pattern. Time to move on! You are an inspiration. Thank you. Jean

jenhopesprays's picture
jenhopesprays
Posts: 129
Joined: Sep 2007

Thanks Jean,

We just keep on keeping on.

I hear great things about UCSF. They are one of the best in the West.

I have a friend with metastatic disease who has been in a "holding pattern for 12 years". There is nothing wrong with that. New drugs come out all the time and maybe our silver bullet is just around the corner.

You wouldn't live in Chico would you? I have a sister there.

Wishing you the best!

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

Yes, they are encouraging and very helpful but you still have to part of the team. The are human and mistakes can be made so stay on top of your treatment. They are a wonderful group of caring dr and nurses. I'm glad you get to join the big league. God bless Jill

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

That's awesome! I'm so happy for you, and I know it's so encouraging for others who are struggling with reaching that NED status. Keep us posted!

*hugs*
Gail

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Jen, I think you and i have talked via email before. I am so glad to hear that you are still NED. You give me so much hope and I will go into a beautiful Saturday morning tomorrow and think about your story and just have an awesome day.Thank you so much, Patti

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Jen. Thanks for the post. Love the picture. My surgeon here at Wake Forest believes that I may be a candidate for cytoreductive surgery with HPIC. At this point he believes he can resect my liver, perform the debulking and HPIC, and resect my primary tumor in one surgery. I'd love to hear more about your experience with the cytoreductive surgery,
Roger

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Jen,
That is great that you are NED! My husband saw Dr. Lenz when he had surgery in LA a year ago. His onc in Hawaii now consults with Dr. Lenz. I was wondering if he recommended HIPEC? We like him very much but I did not know if he tended toward the things he was researching or if he recommends other institutions if their approach would benefit the person.

Thanks.

Aloha,
Kathleen

jams67's picture
jams67
Posts: 927
Joined: May 2006

Thanks for letting us know your great news!! I have been NED since '05 with stage 4. Everyday for all of us is a blessing.
Jo Ann

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Thanks so much for sharing your good news.

You are so right about the information, sharing and caring that comes from all the folks on this board. I am sure those things have made a significant difference in many lives.

Best wishes for many more NED days, months and years to come.

Marie

karafranny's picture
karafranny
Posts: 14
Joined: Jul 2009

Hi Jen,

Im stage 4 too. I dont know what you mean by CRS & HIPEC or even NED?? Could someone explain that too me. Sorry I geuss I have chemo brain!!!!
Was diagnosed a year ago. This is still a little new to me. Im restarting my chemo tx this tuesday cpt-11. was on folfox until Dec then CT scan revealed it wasnt working anymore. Have 3 lung lesions that have grown in size. Also have 1 in my liver but thats remained the same.I feel great cause I havent has chemo in 5wks. Im going to try bentyl for side effects hope it works was in alot of pain from 2 cycles.

mom_2_3
Posts: 965
Joined: Nov 2008

NED means "no evidence of disease" and is also known as "remission."

CRS is cytoreductive surgery. The surgery to remove as much of the cancer in the abdomen as possible, reducing the "bulk" of the cancer is called "debulking" or "cytoreduction" surgery

From http://www.lajollasurgical.com/html/oncology-hipec.html

HIPEC is "Hyperthermic Intraperitoneal Chemotherapy which is a procedure performed during the operation while the patient is still in the operating room. We circulate heated chemotherapy directly into the abdominal cavity, where it can penetrate and kill diseased tissue directly.

During the HIPEC treatment, a surgeon first removes as much visible cancer as possible in a procedure known as cyto-reduction. Then, the surgeon circulates heated chemotherapy throughout the abdomen to kill the remaining cancer cells that are too small to be manually removed. The heated chemotherapy is circulated for 90 to 120 minutes by a specialized FDA approved machine. When this step is complete, the chemotherapy is removed, the abdomen is flushed, and the circulating tubes are removed."

I hope that you tolerate the chemo well. I hope you do well with it.

All the best,
Amy

sheri22
Posts: 278
Joined: Jan 2009

That was a great post which I am happy for you that you are NED, could you tell me what HIPEC AND CRS IS , I just found out Thurs my CT scan looks like it grew so I am looking at all options to tell my DR about,

Thanks and congrats on NED

Sheri22

RickMurtagh's picture
RickMurtagh
Posts: 590
Joined: Feb 2010

PTL for NED!

Live long and prosper!

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