Tired of all the bad news. Is there really hope?

Posted By
baesill
4/19/2017 10:25pm
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Replies: 8

At every turn in my diagnosis for stage 4 all the doctors seem overly optimistic. After every scan and biopsy it's  just more bad news. Looking at my first X-ray that sounded the alarm bells it seemed clearly horrible. 9 days into ipi plus nivo I feel like the first dose isn't going to do the trick, I know I have 3 more, but I just don't see how this can turn around. I feel destined for all bad news all the time and that I'm not going to be lucky like jimmy carter or whoever. I don't know what I'm asking. I'm just sad and wondering if anyone feels or felt how I do now.

 

Hey, I know things feel hopeless right now, but you gotta have faith it'll work in the end. Keep reminding yourself that it'll take time, a cure won't happen over night. I think everyone here has felt the way you are feeling right now at one point or another. I know my last 2 scans were disappointing, but if anything, it has inspired me to live my life more fully now, because I really don't know what's going to happen next. None of us do. I know this is just another pep talk, but it's true what they say, it's all about the attitude. Have a good cry and get it all out, then take a big breath and figure out how to go back to living!
<3

~April

Anonymous - (4/20/2017 - 3:09am)

A better type of questions I would ask is what could I do to make progress towards improvement (focusing all mental power on this what you could do and going ahead with what makes sense for you to do - taking more active role in this thing). So you don't have any room in your mind for worrysome thoughts that are not helpful. 

There are new technology that is emerging all the time which, of course, most conventional doctors in the medical field are not aware of. For example, you could possibly let scientist to send nano-robots into your body that can target cancer cells - probably very soon if not now, it is possible (start reading http://diamandis.com/blog/archive - maybe go through them and search for keywords in each post, like "cancer").

Just in recent years, one revolutionary scientific breakthrough has been with the gene editing technology (https://en.wikipedia.org/wiki/CRISPR - again, you get better information at diamandis.com blog). 

But it does make great sense to me personally that immune system is actually very powerful when providing it with proper stuff. For example, even when you get your skin's DNA damaged by sun, that is not enough because your immune system should be able to deal any false growth immediately. 

It makes sense to me that many extremes cause troublesome factors - factors that contribute to emergence of problems, such as getting too much sun in a short interval or not getting it at all for too long. Body needs optimal D3 vitamin for better functioning of immune system. 

So I would first try to figure out the real causes for your situation, in addition to also treating the bad effects of what is caused. Most trustworthy information to me seems to be available on mercola.com, - such as avoiding all grains, all sugars, eating raw veggies, and only going with these veggies that have the most nutritions in them (you can only eat so much in each day - so you're better off going for the best stuff available in the world).

For example, if you provide your body with a lot of C vitamin, the cancer cells don't like it. It should be toxic to them (like eat a lot of red pepper). If you will turn your entire life style to extremly healthy condition (mostly what you take in your body, but also having enough sleep, and many other factors in your environment. 

Usually the cause of something serious is never just one thing but it is an emmergence of many factors. 

(Beware that many big companies that create medications have own self-interest just like the entire medical field - they don't really want that people will be perfectly healthy, - that is not in their best interest. It is sick-care business, and they don't want less business.) 

My suggestion would be, in case you're in stage 4, and you want to live, to stop your daily-life and become a bad-ass doctor yourself (and degrees are worthless anyway) specialicing to just that specific situation that wants to kill you - so that the rest of your entire life, until the cancer is cured, will be directed to becoming that person who knows better what you need to be doing. (The opposite would be that you just go on with your daily life, and blindly trusting the authority in your community.) 

And so, if you succeed, you will have your life back, and then you're free to becoming something else entirely, should you want to. 

I know this might sound weird, or crazy, but this comes from my sincere want to try to be helpful out from the concentional advice doctors tell you. I hope it makes sense. 

Best wishes, 

Henry 

 

Hi Baesill, my first thoughts after reading your post is "yes" there is lots of hope!!! Why, well first lets think about your present treatment, new Overall survival data was just released (last two weeks) from the trial that I have been part of for the last 40 months. https://news.bms.com/press-release/bmy/opdivo-nivolumab-combination-yerv...   Now the # for the combination are pretty impressive compared to what was available back in 2012 when I started in this game called Melanoma. You could get Ipi back then and survival data was around 20%, where am I going with this is "time". If the combination gives you time, for more of the trials to mature and research to be completed maybe in 2 or 3 years the overall survival data will be in the high 70's or 80% range. Every body has ideas of what you should eat or drink or this or that, all I can say is go with what feels right for you. I haven't made changes as far as diet and I still like my Rum and coke but that is my choice. I am coming up on 4 years stage 4 this June with Brain and Lung mets at that time. The trial, checkmate 067 along with Cyber knife stereotatic surgery has saved my life, and I have hope that more and more advances will keep advancing the Science!!! Best Wishes!!!Ed

Hi Baesill.

Melanoma IS really horrible!!!  HOWEVER, YES!  There is hope.  I was first diagnosed with melanoma in 2003.  I progressed to Stage IV in 2010.  At that point there were NO viable FDA approved treatments for melanoma.  We now have ipi, BRAF inhibitors and two anti-PD1 products that can be given singly or in combination with other things...FDA approved!!  Not to mention as Ed noted, many other beneficial treatment options in the research pipeline.  I participated in an early trial of nivolumab (Opdivo) for 2 1/2 years in 2010.  I remain NED with no further treatment having had my last dose in June of 2013.

Is the "first dose going to do the trick"?  Probably not.  Immunotherapy takes time.  That's why the dosing regimen is more than one dose!!!! 

Melanoma may take my life.  But, I have not intention of giving it my life ahead of time.  So....LIVE!!!!  Will I die of melanoma?  NOT TODAY!!!

However, if the words we have all shared with you here does not encourage you, perhaps you should speak with your oncologist about additional help.  While these articles are directed more toward folks who are not Stage IV, the point they make may be of interest: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/04/the-mental-price-of-melanoma.html

Hang in there.  Ask for help if you need it.  There is lots of info on this board and plenty on my blog.  Use the search bubble to find what you need if you are interested.  I wish you well.  Celeste

Hi Baesill,

After 4 years of nothing but bad news, progressing on every therapy, here I am in year five, and feeling the best I have in years.  You cannot know how things will turn out.  Great advice above, and I'll add two more comments.  First, stop dwelling on the disease as your mind will only make it worse.  And my favorite movie quote..."get busy living, or get busy dying". Your choice.  Hang tough and best in the battle.

Gary

Also doing well (stable or better) on ipi/nivo.  See my prior posts.  Never heard of anyone having a response at day 9.  They'll scan for the first time at 12 weeks and even that is early.

I'm not a veteran like a few of the posters above....(although may very well try the Rum and Coke combination treatment...) but I'm 3 treatments into this on Pembro.. I have up and down days but most are up.

You can do this....

 

There's no reason to believe this stuff won't work on you until it doesn't. Stay positive and roll with the punches on the scans. 

YOU CAN DO THIS. 

I force myself into it. Find something that lifts you up and DO THAT...I write, meditate and try to help one person every day....Makes me feel good. 

I'm also a self healer...I've cut out alcohol, almost all snacks and eat healtier than I ever have in my life. I've lost 22 pounds on purpose and run 3-4 times a week. It keeps me positive. 

YOU CAN DO THIS. 

The combo you're on....it kicks some ass. It might kick yours, you might have some harsh side effects but that combo is no joke. 

FIlter out the negative bullshit...thoughts, people, internet articles, TV shows....focus on the positives. 

YOU'VE GOT THIS! 

Mike

Hi Baesill,

i think most of us have had similar feelings as you - that its really unfair, that we are not going to be jimmy carter, and i get stressed around scan days and also trreatment days (in case my readings are bad and then will not receive infusion) and that no one who i am working with would really understand any of this or what i am going through (and what you are going through)

still i agree with the advice of my fellow posters. I dont have bubbles energy or enthusiasm but i know its a good thing and i need to get on and live life (amd when i am put on prednisone i can be a little like bubbles!). I try to be kinder to others at work and more supportive (perhaps not around scan days), i started some volunteer teaching work and that is going well, i would do more at work too but right now my work is less interesting and fewer chance to make a difference or help others but if things change then i will. Polymath / gary gives me lots of hope - he does not seem to be jimmy carter and does not seem to respond but he has his tumors remived and the strategy seems to work, incredibly brave. My treatment seems to partly work but akso not to work so i am as uncertain as you. But i know there are other treatments and i can go garys route i hope. You are young and this is not fair but we have to make the best of this and there are many here who have survived because of the medicine either the new immunotherapies or charlies adventures with IL2. 

So yes i have felt like you do and probably will again, but i also agree with the other posters, there is hope

and 9 days is far too soon to know if anyhting is or will work, and also dont forget the possibility of pseudo progression - on immunotherapy a larger tumour may just be an inflamed one

good luck, mark