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A Surprise, 3rd Chemo, LONSURF, is Working. 5-1/2 Years into this. (Stage IV)

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

I have not been around awhile.  Saw some people passed away, a couple hit hard because I was friendly and was in contact with them, so took a bit of time off.I poke my head in now and again.  Been dealing with hiding from the virus and trying to keep on going.  

 The quick recap for those who do not know - DX in 2015 with cancer.  Had surgery, 12 rounds of FOLFOX.  More surgery in 2016 to remove part of lung.  Cancer came back everywhere a year later.  Spine, muscles, lungs.  They stopped counting lung tumors long ago. At that time I started exercising a lot.  Had to go on FOLFORI when it was no longer plausiable to watch and wait (late 2018).  FOLFORI stopped working in late 2019.  Was told Lonsurf or get into a trial.  

 Trials were closed, though I had conversations with doctors.  Decided to try Lonsurf to see if it could slow things down until I could get into a trial.  Found out this week the Lonsurf is working.  Not just slowing things down, but everything is shrinking.  I am shocked.

 People go back and forth about chemo and other treatments.  I understand the reasoning why.  The effects and other things, including support around you.  I have been fortunate in being able to deal with all the effects.  But when I was first put on FOLFORI, before the dosage got dialed in, I got violently ill.  If it was like that each time, there would have been no way to continue.

 And I lost some people I know here who decided not to go with treatment.  Their decision, but a couple were particularly frustrating in that they seemed to handle it well, though the support around them seemed to let them down.

 So with that said, please find support if you need it.  Come here and speak with others.  No matter how bad this all is, try to hang onto hope.  Obviously I had a ton of real s--ty days in these years.  But I have tried to do my best to be positive.  And to do my best to be physically strong.

 I am still in shock.  When I was told FOLFORI was no longer working, and that the other couple of options are not the greatest (one my oncologist said was so nasty they preferred for me to not even bother because of quality of life would be so bad that it really was not worth it) I was a bit thrown off.  But kept on going.  

 The above is not meant to criticize any decision regarding going on chemo, or surgery or radiation.  It is more that there may be something around the corner in all of this.  I know my next scan can deliver bad news.  But until then I will keep on pushing on.

 

 

 

JmcDmc
Posts: 8
Joined: Jul 2020

Congratulations. I wish you all the best. And it sounds like you have that in the support department. Bless them.

i'm new here, not as a survivor of cancer, but as a survivor of caregiving.

I've screwed up a lot since my wife's diagnosis (Duke's C; IIIB/C) of rectal cancer in November 1995.

Most recently, I kept her home for a week between December 26, 2018 and January 2, 2019 with a small bowel obstruction following abdominal surgery. And weve done the SBO thing SO many times since 1995. I knew better than the docs did. 

We've never had the people you speak of, but I sure wish we did. 
Her chronic sickness following treatments in 1996 led to a life of isolation. She did a lot of bed, bathroom, couch. I did a lot of bucket duty.

She always had good meds; I could afford all the alcohol I wanted (or needed, as I saw things).

After exploratory laparotomy in January 2019, and removal of many surgical adhesions and most of her irradiated small bowel, 2020 has been our best year in decades.

That and I can now say 'Hi. I'm Jim and I'm an alcoholic.'

I'm also a caregiver. 

And 25 years later, WE are still here and together.

Jim

 

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

Jim

Being a caregiver is tough.  25 years shows how strong you and your wife are in all of this.

Best wishes for nothing but good things from here on out for both of you.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

This is good news, indeed.  You've made my day. 

May this continue, and everything shrinks to the point of non-existence - or close to it. 

It is great to see your fish face here on the forum. 

Tru

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

I am chuffed beyond belief !

You know how much I love that word.  It always seems like I am saying something bad.  And my little four year old inside smiles devilishy and jumps up and down.

Ummm, did I use it right?  

LOL

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

and thankfully it is not a naughty word, but I am sure I could share a few English ones with you. 

Tru

NewHere's picture
NewHere
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Joined: Feb 2015

What a good day Laughing

SandiaBuddy's picture
SandiaBuddy
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Joined: Apr 2017

Great news.  Congratulations.  May the improvements continue.

NewHere's picture
NewHere
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Joined: Feb 2015

I am keeping my fingers crossed.  Did a 2 mile run yesterday and will get on the bike trainer today to see how far I can get.  I know I am really preaching to the choir on this one with you, but the exercise has been a big part of things for me in maintaining a pretty good quality of life in all of this.  Actually very good.   Like the new avatar as always.

SandiaBuddy's picture
SandiaBuddy
Posts: 1093
Joined: Apr 2017

The pandemic shut-down has kind-of frozen my hiking for the Summer.  Hopefully Autumn will be better and I can do some avatar changes.  That is from a late Spring hike.  From my perspective, "exercise helps with everything."  I did try to start running again this Summer, but hurt my hamstring, which I think I am finally getting over.  Cheers.

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abita
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Joined: Dec 2017

Was the one they said the quality of life would be too bad was stivarga? I a asking because my oncologist had mentioned that and after reading about it, I said no, and am now on erbutix. Which leads to my second point, thank you for letting us know how well the lonsurf is working. I didn't realize it could work so well.

NewHere's picture
NewHere
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Joined: Feb 2015

Stivarga was the other drug.  Basically when the FOLFORI stopped in December my Oncologist said to me to go find a trial.   She had those two drugs in the wings if needed, but before starting anything wanted to go trial route and/or see what was out there.  Depending on the trial, certain treatments within a certain period of time before the trial (or at all) could exclude you from the trial.

When bloodwork excluded me from one trial at MSK early January, we considered going back on FOLFOX until a trial opened up.  I checked with Dana-Faber, there was nothing.  Yale had some possibilities, but the FOLFOX may or may have not excluded me based on the trials.  When that finally got sorted out, I was going to hold off on treatment and just keep on getting scanned.  Not that I was stopping treatment, but hold off as much as possible in order not to interfere with a trial.

In May a couple of things happened - first a scan showed that one of the tumors in my lungs was getting close to interfering with my airway.  It was close to having to have radiation.  My doctor was kind of shocked, kept on asking me "Seriously?  You are not having problems breathing?"  I really didn't.  But obviously this was going to need to be addressed at some point.  The tumors were growing pretty quickly.

The second was I got an appointment at Yale.  Trials were still closed, but it was part of the intake process.  The doctor there also was impressed with my general health and condition.  He said I should go on Lonsurf to try to slow things down and make sure I was in good condiiton by the time trials opened up.  He also said some people respond. well to it. Lastly he said he was pretty sure I would tolerate it well. He reiterated that one of the reasons Lonsurf is considered "tough" is that it is a third line drug.  By the time someone is put on it, they have gone through different chemos and surgeries, etc.  In other words, most people are already in bad shape by this point.  I am not (other than cancer everywhere ;) ).  And he was right.  It is not been bad at all.  I have been so lucky with all the chemo like that.  My wife says it is tougher than I think it is when looking at me, but there is nothing in any of the things I am on that would remotely have caused me to want to stop.  (The neuroapthy from FOLFOX was an issue at the end and the first round of FOLFORI.)

 So I went on Lonsurf.  About three weeks before my scan, I also found out I have a marker for a drug trial at Yale which is real promising.  I got lucky, about 25% of CRC patients have what they are looking for.

So we pushed up the scan.  If the Lonsurf was stabilizing things, or slowing it down, we would have delayed the study.  With it working so well, I am not going in the trial.  Going to ride out Lonsurf.

I have not been doing anything special.  I am exercising a lot as you know.  I do semi Keto thing - really meaning the occasional 16:8 fast.  More so just some days if I slept longer and not hungry.  Nothing special on the diet, though in general I eat healthy with not much junk food.  I have always liked vegtables and fruits.  And my wife cooks a lot of chicken, turkey, fish.  Not much red meat.  

I wish I could figure out exactly how I lucked out this time, would pass it on.

But I can say for me Lonsurf has been great.  Was a bit scared beforehand.  Maybe because I actually read the warnings and hearing the general thing that it is tougher.

Hope that helps a bit.  If there is anything else I can help with, information or otherwise, please let me know.  Post here or DM if you like.

 

abita's picture
abita
Posts: 815
Joined: Dec 2017

Thank you for tthe information. You confirmed my distrust of stivarga. And hopefully have inspired me to get on that elliptical to FINALLY start getting some exercise, which I happen to really believe would help me in the cancer fight, but the longer I have been putting it off, the more tired I get and harder it is to start.I appreciate the insight into 3rd lin treatments being harder for those who are not as in good health otherwise. I am vegan, but living alone and being tired and dejected, haven't been eating as well as I should. So much easier to pop something in the microwave than cook up some veggies or prep some fruit. 

I am glad you are doing so well. And I appreciate you helping me see that there is hope for me.

abita's picture
abita
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nd so glad to hear you are doing well!

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

That is wonderful news that you have something that is working.  It's important for others to hear your story because some don't know that there are other treatments out there that might just work.  Thanks for the update.

Kim

NewHere's picture
NewHere
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Joined: Feb 2015

I am so happily shocked.

Cosette24
Posts: 14
Joined: Jun 2020

Wonderful news. Crossing my fingers for good news on the next scan. 

NewHere's picture
NewHere
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Joined: Feb 2015

Keeping my fingers crossed too (and for everyone else).

Getting this news 5-1/2 years in really is a big lift.  

Canadian Sandy's picture
Canadian Sandy
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Joined: Jul 2016

Fantastic news! I'm so glad to hear from you and to know something is working. Keep the faith!

NewHere's picture
NewHere
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Joined: Feb 2015

You know what I have been saying, I am stubborn so I keep on going forward :)  

feckcancer
Posts: 118
Joined: Jun 2018

I am so very happy for you. Thank you for letting us know your great news. I was so glad to see your message. Fantastic news Laughing

NewHere's picture
NewHere
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Joined: Feb 2015

Biding my time with the treatments has paid off for sure.

worriedson714
Posts: 71
Joined: Dec 2019

My dad is waiting to see if they can do his second surgery and having a hard time with things . I just told him your story to show him there is hope . So thank you for reminding him and me of that good luck hope it keeps shrinking them . 

NewHere's picture
NewHere
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Joined: Feb 2015

If there is anything I can do in adding other information or helping with questions, please ask away here or DM.  There are definate times where it is tough.  I have found that to the extent that I can push the down thoughts away it helps.  Would drag me down I think otherwise.  I am not saying I never have the "Oh man WTH?" thing happening. But I try to get past it quickly.  Watching a comedy/movie I like is one thing that works for me if something is bothering me.  

worriedson714
Posts: 71
Joined: Dec 2019

Will do thanks and your right about that its tough and I feel like the doctors literally aren't helping as much as they could which makes it harder.  And my dad is getting more and depressed so this is really good advice for him and me both thank you .

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PamRav
Posts: 281
Joined: Jan 2017

To see your post. Congrats on your success with Lonsurf. Great news  I'm currently on my third, maybe fourth reoccurence.  They used Folfori previously, but decidedit was best to switch me to Folfox to see if it would work better.  I have my 4th tx on Monday. So far so good.  Neuropsthy is slight. My doctor mentioned using  lonsurf and stivarga. I told him that i thought those were end of the road drugs, he said , with his very dry humor... they're all end of road drugs. Ugh.  Anyway he had the same opinion as your docs , that often those drugs are used when your body is at its lowest and if you give them when youre still in good shape they work well   
your post gives me hope. so much hope  Thanks for sharing

 

 

 

 

 

NewHere's picture
NewHere
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Joined: Feb 2015

I sometimes make some bit of dark humor about all of this, but I am not sure I want my doctor to. (Though after being with them for years, they do laugh at my jokes that are a bit off.)

I am on my third recurrance.  Inoperable since 2017.  Glad to hear FOLFOX is going well for you.  Make sure to keep track of the neuropathy.  One thing, if I could go back and consider, is my oncologist had me off the Oxi for an extra week, could I have gotten another treatment or two.  Lonsurf and Stivaga were the last two options for me.  Lonsurf has been really okay to deal with, though I do get real tired late Friday into Sunday (drugs Monday through Friday).  But if I have a tried Friday through Sunday two weeks in a row (I am talking sleeping some days 16 hours, more just going with it and not fighting it, binge comedies I know so I don't miss anything or drift in and out of a ballgame), with the results I would sign up any day for it.  And I like the pills as compared to the pump.  Had about 40 treatments of FOLFOX and FOLFORI.  

 

Good luck with the FOLFOX.  It did knock my tumor down when I was on it.  

 

Hager220
Posts: 6
Joined: May 2020

This is such amazing news. Thank you for sharing. Your story is inspriing. My father is stage 4 with agressive form. Folfox was working after only three rounds we saw a huge decrease in all tumors except one. He went in for sugery friday to remove liver tumors and unfortunatley doctors said they didnt want to remove them as they have found spread to the abdominal wall, assuming it may be other places as well but all other organs look clean in scans. Colon tumor was removed. Surgical team told him he would be on chemo for rest of his life and said he had about 2 good years left. This is devastating news and almost seems unfair as He is very health otherwise and I wants to fight. Im so devastated that they did this but I also understand they want to be realistic. Any advice for me that you can offer would be great? You are a survivor and living life! thank you 

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

I wish I could bundle things up with what I am doing.

 

1.)  Try to stay as positive as possible.  My comment to many is I have a healthy dose of disconnect with reality.  Meaning I know what the stat says and all the rest.  Chemo and surgery stinks.  But I have been going with enjoying the good days, and making the best of the bad days.  Try to avoid thinking too much of the "what may happen" and the dark thoughts.  Not to say they don't happen, but try to shake them.

 

2.)  Try to find normalcy.  It is a little more difficult with COVID.  But when I was on chemo (FOLFOX and FOLFORI) about 40 plus rounds I would do little things.  There is a diner that I have been going to for years.  Sort of like home.  I would try to go grab a cup of coffee and a sandwich, salad or something.  Getting out for even a bit when I was tired made me feel good.

 

3.)  It is okay to be a bit selfish.  Meaning, binging TV shows when you are feeling tired is okay.  Not saying not to get off the couch (which I am a firm believer in, as I will discuss), but if there is something that needs to be down - wash dishes, run errands, whatever - and you need a bit of a mental break, take time to do something you want to do that makes you happy. 

 

The corollary to this is knowing when you should get up and do something when you have the strength, the TV or the other things will be there.  There are times where I know I am not capable of doing things but couch surf.  Along those lines (and I am going through this now) as the chemo may be bringing you down, try to remember this is how you always feel at the stage of treatment, but then you will come out of it.  This week Lonsurf REALLY kicked my butt.  Tired.  I knew I had to sleep.  I knew I was not going to do what I wanted to do.  Obviously this leads to frustration and feeling a bit bleak.  But I kept on repeating in my head I know it ends by Monday and I can do things.  And it is like someone throws a switch.  I have 5 days now again on it.  It always is after Friday it hits.  It is not bad M-F.  I guess that is why they give you a 2 day break, probably 5 days is where it peaks. 

 

4.)  Try to reduce stress.  There is a correlation between stress and health.  Obviously meditation or yoga is not going to cure cancer.  But it can help the body generally.  They have done studies about how stress affects you in many ways.

 

5.)  Try to eat properly.  There are a million things out there about diets and the rest.  I have always liked fruits and vegetables.  I eat red meat, but not often.  I have desserts when I go out to eat (which is not very often, my wife is a very good cook and much prefers cooking as opposed to going out, despite me always offering to take her out :) ).  I have been doing 16:8 fasting for about three years a few times a week.  Not really intentionally, but more that it happens, if I sleep a little longer, not hungry etc.  There are things about sugar and cancer, so if this helps at all (though I am not sold on the science) I wound up doing it.  There seems to be overall health benefits, though it is not for everyone.  I have always had the ability to go without eating for awhile.  But I do eat if I am hungry. 

 

6.) Exercise.  When my cancer came back third time inoperable I started exercising heavily.  Cardio.  Swim/Bike/Run.  Work different parts of the body, helps prevent getting too bogged down in one thing (possible boredom?), they counteract things (for instance people who only bike can have issues with bone density in parts of their bodies, the running counteracts it).  But anything that gets you moving is fine.  There were days I could just walk on a treadmill.  So I did.  I have over 80 tumors in my lungs and had part of my left lung removed in 2016.  I still am biking 25-30 miles a week on a trainer, running 3-5 miles a week and swimming about a mile.  This is actually dialed down since all races cancelled this year and I am just maintaining.  My doctors call me the unicorn and are convinced that me working like this has my cardiovascular system compensating for the cancer.  And mentally, after each workout, even if it is a "bad" one (I am very slow.  LOL) it is a serious boost.  Some days it is very tough to do, and more so as treatments build up, but getting up and doing anything is great.

 

7.)  Talk about the cancer, but not too much.  I did not want to be "that guy" with the cancer.  I think many of us are like that.  If I meet someone who was just diagnosed I will talk to them and about what I have gone through.  On this board I talk about it.  I will fill my friends in about updates.  But I don't dwell on it and stay positive.  I get comments all the time about me being positive.  And it makes everyone around me positive and even more supportive.  I don't get pity.  Which is great.  Thought once in awhile, I could catch a break from family when I want to rest and they forget I have these things going on ;)  By the same token, avoid people who are negative/not helpful.  I have been fortunate in that everyone of my friends have offered to help me –rides, getting food, whatever – throughout this.  And my family has been there the entire time.  There are people who have been on the board who have not been as fortunate and have run into situations where they were not only not getting support, but seemed to be getting pushback and/or undermined in dealing with this.  And I cannot help but feel that in some instances it led to negative outcomes that may not have otherwise occurred.  Use this board and the people here.

 

8.)  Ask any and all questions of the doctors.  If you do not like/understand the answer, ask again until you understand it.  The person who cares the most is the patient, no matter how great the doctor is.  Get genetic testing.  Look at trials.  I am at MSk and they do a ton of genetic testing.  They are leaders in cancer.  But I also went to Yale for studies when MSK suggested it when there were no trials available.  (They said try Yale, Dana, etc.)  And Yale had a couple of things they spotted that may work with drugs.

 

9.)  Do not get bogged down in stats too much.  When I was diagnosed, the 5 year survival rate was 10% (now 13% or so.)  The stats cover a lot of people, those with other issues, those who may be older and the rest.  It will play in your head a bit, try not to bog down.

 

10.)  Be careful of all the cancer "cures" out there.  It is easy to get caught up in things and feeling like you are ignoring something that can save your life.  Some things are EXTREME.  I am not against supplements, TCM (Traditional Chinese Medicine), acupuncture and the rest.  In fact I have used them from time-to-time, though when on chemo check to make sure there are no contraindications.  But there is a whole cottage industry of miracle cures and attacking "big pharma" for hiding cures.  And it is difficult sometimes not to think you are throwing away a chance.  We are the perfect prey for it, especially if we think there is no hope.  I got ripped off by a TCM practitioner when I get diagnosed the third time.  Charged me an outlandish amount - probably 35x what I should have been charged based on others I eventually went to - but I paid because I was there. 

 

Bottom line I believe in science and will go with what doctors and science has as the current state of the art treatment.  I am also not going to dismiss, and will implement, anything else that makes sense and does not conflict with a treatment. I think there may be other things, but that are some of my big ones I think. 

 

If you have any questions or maybe I skipped some words above (did not realize how long it got J ), please let me know. 

 

Real Tar Heel
Posts: 104
Joined: Nov 2019

great post

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I will be starting it soon. I took 2 rounds of stirvarga.  I had problems on it, the worst were laryngitis and hand and foot syndrome. It was part of the suggested chemo combo taken with Opdivo that was supposed to shrink tumor by 30%.  it did not work for me at all.

I havent had chemo since July 1 due to reaction to Opdivo.  It caused pneumonia and hypergrowth of my tumors.  Doctors at home treated the pneumonia but didn't recognize the reaction to Opdivo.  I was really upset because the tumors grew 20% in the two weeks I was in the hospital.  I went to Mayo clinic the day after I was discharged and my oncologist at Mayo Clinic is the one who diagnosed it. He gave me steroids to stop the reaction and help clear my lungs.  

I'm going to post on new thread to warn people about that.   my post might be taken down by moderators..

 

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

I am sorry to see the hypergrowth Joan.  I had not heard of that until you mentioned it, and just looked at some of the articles.  I know of the cyclones and the rest.  Your post should not be taken down.  It is valuable information for people.  Something I found is below.  

I am guessing you saw above, but my oncologist really wanted me to avoid Stivaga.  She was not overly happy with Lonsurf, but bascially said try anyting else befoe Stivaga.  Compared to FOLFOX and FOLFORI, it is not that bad.  Pills Monday through Friday, weekend off, Pills Monday through Friday, 16 days off.   The late Friday through Sunday the two pills week are tired. This week was more than my last cuycle.  But I have had so much chemo at this point, getting tired is to be expected I guess.  But not wearing a pump for three days, or the tastes/smell/weird feeling of FOLFOX and FOLFORI, well I don't miss that.  Pills in morning and evening is nothing.  I feel like I am on a vacation.  

If you have any qiuestions on LOnsurf or what I am doing with it, please let me know.  I hope they can get you straightened out quickly.  Make sure to get as much testing done as you can, there are so many trials that are coming out that arre targeting certain kinds of tumors that I am a lot more hopeful that I was a couple of years ago.  I am in a trial (if/when Lonsurf stops) based on a biomarker that responds to chemo that is used for other cancers, and looks to be good for CRC.

Hang in there.  

 

 

In the latest Clinical Cancer Research findings, those who experienced the hyperprogression of tumors, as the phenomenon is known, shared specific genetic characteristics. In all six patients with so-called amplifications in the MDM2 gene family, and two of 10 patients with alterations in the EGFR gene, the anti-PD-1 or anti-PD-L1 immunotherapies quickly failed, and the patients’ cancers progressed rapidly.

 

Aside from atezolizumab, immunotherapies in this class include avelumab (Bavencio); pembrolizumab (Keytruda); and nivolumab (Opdivo). The other major class of immunotherapies are known as anti-CTLA-4 treatments, such as ipilimumab (Yervoy), which target a different mechanism to unleash immune cells to fight tumors.

 

Doctors who prescribe immunotherapies may be able to identify at-risk patients by submitting tumors for genetic testing, Kato and his coauthors suggested.

 

The findings published last year by the Gustave Roussy team also appeared in Clinical Cancer Research. In that study, of 131 patients, 12 patients, or 9 percent, showed hyperprogressive growth after taking anti-PD-1 or anti-PD-L1 immunotherapies.

beaumontdave's picture
beaumontdave
Posts: 1063
Joined: Aug 2013

Great post and news, New! I survived my time in treatment [and Cindy's] by celebrating every good turn, and this certainly is one. Congrats..................................Dave

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

It was unexpected but welcomed news for sure.  I am on the current cycle, a bit tired, but knowing that three and a half more days until this cycle is done, then a couple of good weeks, is easier to do knowing it is working...

danker
Posts: 1253
Joined: Apr 2012

Maaybe like me, one of these days you will be NED  for the last ten years!! Sure hope so! good luck to you!

NewHere's picture
NewHere
Posts: 1197
Joined: Feb 2015

I like that idea Cool

If it keeps on shrinking 15-20% each scan, eventually I will get close to NED - Zeno Paradox :)  

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