Disheartened

Posted By
Jdc
9/9/2017 11:25am
View other posts by
Jdc
Activity
Replies: 7

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

Joe

adrianc - (9/9/2017 - 1:34pm)

Wow,that's insane.I am in no way into conspiracy theories but its easy to add two and two and see the huge profits  the big Pharma makes from these drugs,no wonder they are pushing them so hard.Cancer is certanly a huge indusrty and big money for these companies.I personally would never do Ipi due to the associated toxicities, lets alone the stagerring cost.In a matter of fact I keep in touch with two fellow MM patients and they both had been rushed to the ER/hospitalized in the last 2 weeks sudffering debilitating side effects from the Ipi from the Ipi/Nivo combo.They are both on Prednisone now and the Ipi had been discontinued from their current treatment.My opinion is that this stuff is as toxic as the Inreferon and IL-2 Some patient surely tolerate it well but.for some this stuff is life threatening! Just plain no from me.Best wishes to you,

 

T.Chasse

Ed Williams - (9/9/2017 - 2:22pm)

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  

MovingOn - (9/9/2017 - 3:24pm)

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.

Jan‘17 Mel. 3B unknown primary. Neck dissection Feb’17 (tongue atrophy from surgery). Ipi Mar‘17-May’17(Hypophysitis), recurrence Sep’17(nodes behind ear&parotid). Pembro Oct‘17-

Mark_DC - (9/9/2017 - 5:17pm)

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

miaka618 - (9/9/2017 - 5:18pm)

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.

~April

jennunicorn - (9/9/2017 - 9:17pm)

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.

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

sister of patient - (9/10/2017 - 12:36pm)

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