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

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 said:

Thanks Sandia

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.

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.

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 said:

Tips Advice Hager

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. 

 

great post