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Born in the 50s

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Comment by Ultra2015 on May 22, 2019 at 12:39pm


Thank you for your response.  Your knowledge is exceptional and these commercials certainly don't explain any of this information. 

I will write to my representatives. 

Thanks again.

Comment by NoLongerInBergenJC on May 22, 2019 at 12:12pm

@Ultra2015:  I oppose ALL direct-to-consumer drug advertising.  That said, I oppose it ESPECIALLY for cancer treatments.  Yes, Opdivo is a wonderful drug, but as with any cancer treatment, it works for some and not others.  That is how individualized a disease this is. All a drug has to show is efficacy that is "statistically significant."  That does NOT mean universal.  

The "relentless" ad is for Verzenio, which is a CDK4 & 6 inhibitor specifically for HR+/HER2− metastatic cancer. What this means is that it's for tumors that express the proteins CDK4 and 6.  (I worked on oncology trials so I know something about all the terminology and how specific these treatments are.)  If a tumor doesn't express these proteins, Verzenio has not been demonstrated as effective in trials.  But of course the ad doesn't tell you this, or if it does, it breezes by it.  The other heavily-advertised treatment is Ibrance, which is also a CDK4 and 6 inhibitor.  If Sandi's tumors were not this type, these targeted treatments would not have helped her.

I do understand how triggering these things can be and I agree with you that they are unrealistic.  They give ordinary people who are just watching TV false hope.  And this is a reason why no drugs, ESPECIALLY cancer treatments, should be advertised directly to consumers.  You might consider writing to your Congressperson about this.  These people need a push and I think legislation about this is needed.

Comment by Ultra2015 on May 22, 2019 at 11:48am

I am so sick and tired of TV commercials for Medistatic Breast Disease that show the happy patient and family all joyful over the treatment that is giving the person a new life.  Don't get me wrong, I would have given anything to have had Sandi for one more minute if her quality of life was half of what it was before she developed the MBD.  They give you the definition, breast cancer that has spread to other parts of the body.  Right, Sandi's went to her brain.  They don't mention the constant doctors appointments, scans and blood work or the ports or the massive chemo to keep the original cancer in check.  Then the radiation treatments, first stereotactic to pin point the radiation if there are only 2-4 tumors, and then the waiting for another scan to see if things have changed to find out that the tumor has shrunk.  Oh happy day. And then the waiting for another scan to find out there are more and more stereotactic and more waiting while the chemo is taking its toll.  Then more scans, and now there are 7, then 11 and whole brain radiation is required.  Massive does for 15 days straight.  The aphasia the radiation brings, the muscle weakness and immune problems, the hospitalization and then hospice.  20 days of hell.  The prognosis is usually 18-24 months, Sandi lasted 30, but I would not want anyone to have to suffer the way she did, especially the last 6 months.  I'm sorry, I just had to get it out.  The commercial with happy people, birthdays and family outings is just so unrealistic.  I do pray there are many people out there for whom this and other new treatments work. God knows I wish they had one for Sandi.  I just can't deal with the portrayal as reality.  I know, its just a commercial.  

Sorry.  Thanks for letting me vent.  

Hope everyones day was better than mine.

Comment by Barzan on May 19, 2019 at 7:08am

Bergen and Maggie,

I am so sorry for the difficulties of your years prior to their passing being ever so painful.  We didn't have anything that compares leading to his death.  After his father died, he fell into depression and started drinking more but not to the point where he was hateful to me or losing his job.  He worked with homeless teens and they all adored him.  

You two ladies are so strong to have endured all the bad behavior that preceded his passing.  Love is a very strong addiction that many of us can't kick because we hang on to the happiness that had existed and fight to the end to get it back.  I hope you can find the peace you need to move past all the anger and resentment.  You deserve to be living your life knowing you had done your best and forgive yourself of the blame you live with.  

Hugs to you both,


Comment by Maggie on May 19, 2019 at 5:03am

Bergen...we have some similarities...

Almost 6 years ago my husband died of brain cancer. We were very happy for 17 years, but after we retired and moved, things turned sour and it went on off and on for 11 more years. Old story that I’ve posted here long ago. In a nutshell, he became critical, controlling and depressed. I was the brunt of his unhappiness (not physical). He simply could be quite unkind...not all the time, but enough that it left permanent damage to my psyche.

Ive  also moved out of state, new home, new friends...I’m fairly content. It’s a better life than many have. I enjoy my freedom.

Unlike you, I can’t really justify his behavior. He was smart, ethical, hardworking, honest and came from a fairly decent home life, although his father had been a big bully. I was wife #4...maybe that should have been a clue.

So, I’m left still mad. Mad at the way he treated me for no good reason. I have not been able to get past it and that bothers me more than his actual death. I would not go back unless it could be like it was early on.

I miss him very much, especially when I remember some earlier happy times, but I simply could not go back to feeling unloved and that’s what it really boils down to. Such a confusion of feelings I have now about him. Perhaps my resentment keeps me from feeling the loss so severely.

Comment by NoLongerInBergenJC on May 19, 2019 at 4:01am

@Barzan:  My husband and I had a very rough last decade.  I now know that he was having TIAs that he either wasn't aware of or ignored.  But I could not know that.  All I knew was that he was never remembering to do things I asked him to do.  He could never find anything in the refrigerator.  He'd get fired from jobs months after getting a glowing review.  He became unable to navigate office politics OR social situations.  A friend of mine who works with autistic kids would tell me "He needs to see a neurologist."  SHE knew.  I didn't.  All I knew was that I was working 60-80 hours a week and I had no help at home, and our already-messy house was getting worse.  And he'd spend hours in his man cave smoking cigarettes or pot or playing the guitar or napping.  He'd get angry with me for not being happy enough for him when he'd get a new job.  I had long since stopped jumping up and down because I knew the trajectory already. He was no longer the person I'd known, and with me getting ever more burnt out from having to carry it all myself, neither was I.

He wasn't an asshole.  He was a good guy with steamer trunks of emotional baggage from his childhood that he was never able to face and purge.  He was an emotionally needy guy who never realized how needy he was, and once his brain started acting up, we muddled along as long as I had jobs that weren't very demanding.  And when I was laid off and he WANTED to step up to the plate, I got another job for more pay within a month and three months later he was fired.  Again.  

We had a brief period when he first became ill when he opened himself up and I really thought we could have a new beginning.  That didn't last, and for the next six months I was juggling his moods, his treatment, and a manager who, once I declined to take family leave because it's only three months a year and I had no idea how long this would go on, refused to cut me ANY slack at all on my job.  So we were sniping at each other a lot.

Neither one of us were saints.  I can't defend my inability to just suck it up.  I had the psychological insight that he didn't.  But I was already burnt out from work and everything.  

So why am I telling this story?  So  that you have context when I tell you that even when your marriage is troubled, even if you felt trapped in your own life and sometimes crunched numbers of how badly you'd get clobbered if you left but you never really wanted to leave, you Just Wanted Things To Be Better, you don't grieve any less.  In fact, guilt adds another horrific level to the grief thing.

I have a good life.  I moved away and bought a beautiful house that DIDN'T need a ton of remodeling.  I made friends.  I'm financially secure.  I was able to retire last year.  I do what I want when I want.  I don't walk on eggshells.  And I'd still give it all up if he could come back -- but not the way he was in those years when he started falling apart, but the way he was before, when he wasn't depressed most of the time, and he was funny, and we hung out with friends and went to parties and laughed a lot.  I'd even go back to work if I could have that.

Comment by LP on May 19, 2019 at 1:58am

Thank you Nolongerinbergen for your reminder that year 2 can be gruesome - I'm 3 months into year 2 and one of the hard things, besides the continuing but different rollercoaster of emotions, is the expectation of everyone else that you are on a smooth upward path towards "recovery". I wonder sometimes if my worsening anti-social behaviour is my way of telling them - NO! I'm NOT 'getting better"! It's those friends who just let me be me that help me learn to live with this. 

Barzan, I know about getting angry with my husband for having been a good guy - of all the awful men in my earlier life, he broke my heart the most by being wonderful then "leaving". Then I remind myself that he didn't want to go, of course. 

Comment by shelley on May 18, 2019 at 8:42pm

Hey Melissa, Don't know how, but I somehow deleted my post so here it is again...    

Congratulations on your milestone.  Congratulations on your 'normal thought'.  Congratulations on not weeping at the pictures (although weeping is absolutely okay).  Congratulations on your victory.   It was not a 'kind of victory'- it was a victory.  You've worked hard for this victory, Melissa- try to enjoy it.   XO

Comment by Melissa on May 18, 2019 at 7:47pm

Suzan, I play Hallelujah over and over again. It's one of the few songs I can stand to listen to.

I think I reached a milestone today, and you reminded me of it, Suzan.

I was looking at pictures of Gilbert and he was doing something that used to annoy me in one of the photos. I thought to myself, "Jeez! He could be such a doofus sometimes!"

It was just a normal thought. I wasn't weeping at the pictures, I was just looking at them and remembering. Then I had a non-widow thought! It was a kind of victory, I think.

I'll be thinking of you on the thirteenth. I'll play Hallelujah. Sending you love.

Comment by Barzan on May 18, 2019 at 7:19pm

That is supposed to be cushion not curious.  


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