Disheartened

This topic has 6 replies, 6 voices, and was last updated 6 years, 12 months ago by sister of patient.

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- September 9, 2017 at 3:25 pm
- Quote
Jdc
Participant
This may sound foolish to many, I had 1 round of yervoy on 7/20 10mg, about 2 or 3 weeks later severe headaches. Diagnosed with hypophysistis, have been on 100 MG prednisone for over weeks, they tried to wean down but headaches came back severe again so I’m back at 100 MG and still have the headaches just not as severe. I recently got statement from insurance company, my 1 round of yervoy the hospital charged the insurance company 957,003.49 A million dollar treatment? I was appalled, I do not want to sound ungrateful but I honestly don’t know if I can feel comfortable receiving this treatment at that cost.doe’s this even sound right? I hope to not offend anyone, I want to live as long as possible, I have a wife and 2 kids would live to have grandchildren. This is ridiculous though I’d rather that money go to cure some child’s cancer

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- - September 9, 2017 at 6:22 pm
  - Quote
  ed williams
  Participant
  Hi Joe, questions here usually don't offend any one. I am not 100% sure but $150,000.00 for the 4 treatments of Ipi is a number that I have heard before, when it was the standard of care in 2013-14. The pd-1 drugs for a year of treatment is a little higher if my memory is correct. I think around $10,000 to %14,000 per month for pd-1 monotherapy. I haven't seen the price for Ipi at 10mg/kg or stage 3 folks!!! I would think that eventually the price will come down as more drug companies get similiar drug products to market!!! I hope the hadaches get better!!!Best Wishes!!!Ed
  - September 9, 2017 at 7:24 pm
    
    Quote
    MovingOn
    Participant
    
    My 10mg/kg doses were $57K each (Aetna insurance). Is it possible that your health system made a mistake when typing?
    
    Regarding your headache, please have your complete blood work done. Endocrinologists everywhere are overbooked so don't count on them to know the details of your case or for them to be proactive. Hypophysitis is not only a condition (swollen pituitary) it is also a cause of other conditions (hypothyroid, low cortisol, low hormones). So the hypophysitis may have been the initial cause but now many other conditions need to be managed, not just the hypophysitis. For example, low thyroxine could be causing your headaches.
  - September 9, 2017 at 9:17 pm
    
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    Mark_DC
    Participant
    
    I feel bad too about the high prices (makes me feel guilty and down sometimes, though dont think I should)
    
    I think the price you saw was way too high and the insurance company will negotiate it down
    
    I am amazed whenever i read my insurance bill – the difference between the price charged intitially and then the price paid by the insurance company (much lower). If you dont have an insurance company then the price is impossible to pay. the whole system is a joke, worse than buying a car. but at the same time i know i am getting better treatment than if i was back in the UK where I am from. so i really do not know what to think. i feel guilty but i never wanted this disease and did not act in a way so as to get it.
    
    bottom line, i hope you have good insurance and a good company and try not to read the initial prices which i dont think mean much. like the rack rate in a hotel which no one pays. and dont feel bad about it, we have too much more to deal with and need to get on making the best of life 🙂
    
    good luck mark
- - September 9, 2017 at 9:18 pm
  - Quote
  miaka618
  Participant
  Wow! My one treatment was only $275,000. A million dollars is a little bit ridiculous.
  Indeed get your hormones checked. My hypophysitis affected my cortisol and thyroid. These 2 pills are now my best friends.
- - September 10, 2017 at 1:17 am
  - Quote
  jennunicorn
  Participant
  It is interesting to see the different prices we have all come across. I personally know scientists that worked on Opdivo and how long and hard of a process it is to go from nothing to a drug that works in humans. It is a TON of money spent in the hopes that a drug actually works, many things tested do not work and those things never make the company any money. So, that is how these drugs get the big price tags. Over time those prices will go down a bit, but right now with these drugs still being fairly new and having not much in the way of competition, it's just how it goes. Don't feel guilty at all, insurance companies have more money than we can even fathom, they can handle paying these big ticket drugs for us folks that need it.
  
  Hope you start feeling better soon.
- - September 10, 2017 at 4:36 pm
  - Quote
  sister of patient
  Participant
  We were told last year that, under clinical trial, the cost the drug company would incur for a year's treatment – 4 combo infusions and then nivo maint. – was about $400,000. That doesn't include any of the hospital fees, just the ipi and nivo (and we are in Canada).
  
  Doesn't matter though Joe – don't even think about it again – there's no price too great!!!!!
  
  I too hope that your docs can get a handle on the headaches!! Take care and best wishes!!
  
  Barb