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How long have you survived

Silver02
Posts: 14
Joined: Apr 2021

I came across the original post in the head and neck cancer section so I thought I'd recreate it for our lymphoma community. Let us spread positively and hope. Do share your story

ShadyGuy
Posts: 703
Joined: Jan 2017

next October since my diagnosis. I probably had it about 2 or more years before diagnosis. I am very fortunate.

Max Former Hodg...
Posts: 3689
Joined: May 2012

Twelve years since my HL diagnosis, Silver.   Six years since my prostate, Stage 2.   There have not been a lot of members at this Board who have, to my knowledge, passed on, but most do leave contact after a time, so who knows.   I mostly remember DixieGirl, who had numerous relapses over more than a decade.  The most frequent writers here have been people with refractory, or relapsed disease, of which there are many.  Or their loved ones.

The Prostate Board is very different; members dying all the time.  Organ cancers in general are much tougher than the blood cancers, and Staging matters a lot more with the various organ cancers than it does with most lymphomas.  Many, if not all, organ cancers, if they are metastatic, are definitionally uncurable, and all treatments in those cases are pallative.  PCa is like that, but with hormonal treatments, some men have lived 20 years with metastatic disease, but the average is much less.

 

po18guy's picture
po18guy
Posts: 1213
Joined: Nov 2011

Peripheral T-Cell Lymphoma - Not Otherwise Specified X3. Stage IV twice.

Angioimmunoblastic T-Cell Lymphoma X1. Stage IV once.

20q deletion Myelodysplastic syndrome X1. 26% blast cells in marrow.

All three simultaneously in 2014-2015.

Sandy Ray's picture
Sandy Ray
Posts: 130
Joined: May 2017

Was diagnosed February 2017 with Hodgkins and NHL and had 6 treatments of RCHOP. Relapse December 2019 and Stem Cell 2020 stil NED. Next scan is 5/13/2021.

 

illead's picture
illead
Posts: 874
Joined: Aug 2012

My husband has Mantle Cell almost 10 yrs now.  He has had quite a few relapses but he is now in remission again.....so on we go!

Becky

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

I was diagnosed December 2014 with Folicular Lymphoma. Declared NED April 2016.  I have a scan next week.

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

Last week I had my 'every 6 month' cat scan. Today I saw my oncologist and she went over the results. It was very short, no change since previous scan. So now I go on the 1 year plan and won't see her until next year.  YEAH! 

Sandy Ray's picture
Sandy Ray
Posts: 130
Joined: May 2017

I am so happy for you. It always feels good when we get to extend those visits out.

Janet of Georgia
Posts: 2
Joined: Nov 2014

A wonderful feeling.  Yay!!

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tgyphilly
Posts: 22
Joined: Jan 2020

...not counting a relapse in 2018, and 2020, and probably again now.  Scan scheduled for Weds, but all signs, including return of really annoying itching, point to #4.   NLP Hodgkin's should be re-named Cockroach Hodgkin's, because it can withstand all sorts of chemical and radioactive abuse.  

So, that leads to my question -- how many relapses have people had?   

ShadyGuy
Posts: 703
Joined: Jan 2017

Two since my first treatments. Itching of my face, especially at night, is one symptom I have come to recognize. But also fatigue and dizziness. Scans on Monday next. No palpable (by me) nodes but my onc says he can feel them.

Max Former Hodg...
Posts: 3689
Joined: May 2012

SG, I underwent my 'autoimmune scare' last year, and it still is not resolved to my satisfaction.  I have constant itching, random, all over. And horrid fatigue, as well as moderately anemic results, despite taking OTC iron.  I also have a known, but un-common symptom of lymphoma:  a burning sensation all over after having any alcohol at all.  I do not drink much, but even one beer triggers this.   I feel confident that some form of hematologic disease is going to show itself soon; there are just too many coincidences occuring.

ShadyGuy
Posts: 703
Joined: Jan 2017

.... you are wrong. Best of luck my friend. You are a real fighter and an inspiration to people like me. Pls continue.

Max Former Hodg...
Posts: 3689
Joined: May 2012

We're too contrarian to ever go anywhere, my friend.....

 

Jloolee
Posts: 1
Joined: May 2021

Hi All,

New to this online forum but hoping to connect with other survivors. I feel like after your last treatment, there is no preparing you for living life again- what that will look like, how it will never feel like before cancer, and all around a lack of accesible means of finding and connecting with other survivors. Anyone else relate? Any good books anyone has read on life post treatment? Anyhow, i am 2 years in remission for HL. My oncologist is pretty anti-scan unless there is a concern, however I plan to push for one this Otober at my next check-up. 

marijoy07
Posts: 1
Joined: May 2021

Hi Jloolee! Congratulations on 2 years remission!

I'm new to CSN too. I've had no luck finding a local cancer survivor support group so giving this a try. 

I can related to what you said. Life after cancer has been an interesting. Understanding who I am now is my biggest challenge, even after 2.5 years of remission. I don't have any books for recommendation, but I have picked up some hobbies. They help calm me. What kind of struggles are you facing?

Hope to connect with you and/or others here. 

illead's picture
illead
Posts: 874
Joined: Aug 2012

Bill has had 5 starting Feb '14

Drevilmike's picture
Drevilmike
Posts: 1
Joined: May 2021

H have been cancer free since 1999. Hodgkins Lynphoma stage 3

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

I was diagnosed with lymphoma 9 years ago. I have not only survived, I have LIVED. I did not come out of my treatments unscathed but I am so grateful for all my blessings. I just got home from caring for my 94-year-old Mother and this past weekend, our 11-year-old granddaughter stayed with us for a few days. I loved on and spoiled each of them as much as I possibly could. Memories were created. And so my life continues . . .

Blessings,

Rocquie

 

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

I was diagnosed in 2010.

Marginal Zone nhl, stage 4.

Had Rituximab and 2 years later chemo.

In a partial remission ever since!

 

Nice to see some familiar names here!!

poppymann's picture
poppymann
Posts: 1
Joined: Jan 2010

Hodgkins Lymphoma Stage IIB. 

C-MOPP 

3.4gys of bunch of mantle radiation 

No recurrences, but a ton of after effects. 

Almost70now's picture
Almost70now
Posts: 37
Joined: May 2019

I was diagnosed with Follicular NHL on June 16 2010. Relapsed in 2013 and again in 2016. Last check up everything looked good! Never give up! Since 2010 I've been blessed with a granddaughter, grandson, and 3 great grandsons. Life is good! Love, Sue.

Janet of Georgia
Posts: 2
Joined: Nov 2014

I wasn't diagnosed until my second sinus surgery in 2013 and went through 6 months of intense treatment, including radiation.  The ENT after my first sinus surgery in 2012 missed where the pathologist suggested I be retested.  New ENT found out I had it from that biopsy from the second surgery.  I probably first had developed it with the first horrible sinus infection in 2011 and it took me a year to get myself to the ENT.  Its Stage 2 all contained in the sinuses by my nose.  Was in remission for 2 1/2 years.

Had a recurrence in 2017 and went through a year of infusion and pill treatment.  We couldn't get rid of it all and chemo caused me a lung blood clot, so we decided it was reduced enough and I went off of treatment.  I went for 6 month PET scans and MRIs for a while, but am now on an annual PET and MRI schedule unless or until something else turns up.  I try to tell myself it is as close to remission as is possible for me right now.  

So I deal with the pesky side effects but try to live life as fully as possible and as normally as possible.  Glad to have found you all here on the CSN site!!

RachelF
Posts: 7
Joined: Feb 2008

Hodgkin's Stage 2 nodular sclerosis. Splenectomy, laperatomy, tumor removed from my neck, and I had a softball sized mass next to my heart.

My souvenirs are a lengthy scar from breastbone to pubic bone and four tattoo dots for the RT alignment.

LOTS of radiation was the norm in those days: to my entire torso from jaw bone to hip bones.

Somehow thriving in spite of it. I don't visit this site often enough, but feel it's the only place I'll ever find folks who understand what this journey meant.

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