Moving forward with the Iovance TIL trial

[Rower Michelle]

Wouldn’t worry too much about this. Having come from pharma, CEOs routinely get replaced, talk about a single throat to choke.  It’s very likely the lower ranks knew about the drug delays long ago & senior leadership ignored the red flags.  Good time to buy @TJM! 

[TJM]

4 hours ago, LexieCat said:

Um, not quite sure what to make of this: https://www.inquirer.com/business/iovance-cancer-melanoma-drug-ceo-quits-20210520.html

Hopefully it doesn't screw up the trial.

@TJM If you wanna buy low, now would be the time. Stock prices crashed today. 

It won't. But I tell you what..I'll buy 100 shares tomorrow!

Now I'm even more invested in you!

[LexieCat]

6 hours ago, TJM said:

It won't. But I tell you what..I'll buy 100 shares tomorrow!

Now I'm even more invested in you!

Not like there's any pressure, here.... Now I'm responsible not only for my survival, but for Tom's stock portfolio.

[LouT]

Lexie,

Personally, I learned my lesson investing in "coming breakthroughs" my "dead body to drag" was Novovax...lost a load.  But more importantly, aside from having that terrible day, you are on your way with this trial.  I've been quite remiss on the forums lately was happy to catch up and see you with your indomitable spirit on full display.

 The only trial I was exposed to was one for my wife's AMD and for even something that simple the protocols were burdensome.  So, hearing your experience sounds familiar but like Carol's trial on steroids.  Still keeping you in thoughts and prayers for a super outcome.

Lou

[Lisa Haines]

On 5/12/2021 at 6:42 AM, LexieCat said:

Yesterday I got a notification from EviCore, the notorious insurance review company, that they had disapproved my physician's (Dr. Hong's) request for a pelvic CT, on the grounds I'd had one too recently and it was unnecessary. So I shot a text message to Kristine (research nurse) to say hey, I got this, I assume if my insurance won't cover it, the study will?

She responded that that was weird, every procedure they'd submitted was approved. I asked whether this was maybe the "extra" pelvic CT they were talking about before I reminded them that I'd had one just before the progression was diagnosed, and that it, along with my chest CT, was on the disk I'd dropped off. She wasn't sure, but assured me everything would be covered. I told her I'd let her know about any other denials I get, just so we're all on the same page.

Nice to know that with a trial like this, I don't have to fight with the insurance company. 

Teri - I am so happy to hear you will NOT need to deal with EVIL Core to fight for the scan and that is a bonus to your trial too!

I am SO very happy to now be on Medicare and know that I will NEVER have to deal with EVIL Core ever again.  They are the absolute worst medical reviewers out there.  I think they ENJOY adding stress to our lives and think it's all like a game to them.  Deny, Deny, Deny and make the patients go through all the hassle of appeals and added stress.    In my case they denied my hip replacement last year (stating it was "experimental"... WTF !!  Not it's not -- but after the appeal and making my surgery have to deal with a peer review it was ALL a huge mistake on their part.  Somehow they coded my standard hip replacement surgery as some other type of hip surgery?   All their error, but it almost caused my surgery to be cancelled as it was only days before!

They are pathetic and should be out of business for causing so much upset and stress to the patients that have to deal with their bogus denials.  I really HATE the insurance controls our care in many ways.  Thankfully I was well warned when we went on Medicare to avoid the Advantage plans too.  Turns out my PCP and many of the local docs in my area are not part of any of the plans offered here and if you do go on one and then want to seek a second opinion you may find you are very restricted.   BUYER Beware!

On a happy note -- I'm glad to hear you are doing well and love that you are sharing your expereinces with us!

Best wishes for total success!  

 

 

[LexieCat]

I really don't have any choice of carrier in terms of Medicare Advantage plans. I get my healthcare (apart from Medicare, for which I have to pay the whole premium and, given my income, I'll be paying like three times what I'm currently paying for health insurance) through the State Health Benefits Program. I pay only 20 percent of the cost of Medicare Advantage, so I have to take the Aetna plan offered. Unless I want to pay even MORE premiums. I do always opt for the plan that permits you to go out of network--dealing with something like lung cancer, you want all the flexibility you can get.

[Judy M2]

@Lisa Haines, I agree with your Medicare Advantage comment. Both Medicare and my supplement and drug plans (AARP/United Healthcare) have been pretty good throughout. Of course, the cost of Tagrisso is insane but I think any insurer would only partially cover this drug. 

[LouT]

Every time I looked into an Advantage Plan it would seem less expensive, but was either too restrictive and/or covered too little, when compared to my Aetna Supplemental Plan.  My hospital bill for the lobectomy was near $160k and I paid a touch over $2k of that bill.  Other than my normal Medicare deductibles I rarely have any co-pay at all.  I'm very happy with a supplemental plan and don't see a need to change.  Even part D doesn't make financial sense right now (but if I needed chemo it might).

Lou

[LexieCat]

My Aetna plan should cover everything my current insurance does--I have a $10 copay for doctor visits and don't pay anything otherwise. My Rx costs are pretty low, too--the most expensive thing I've had to pay for were one of the eyedrops when i had my cataract surgery. My only gripe really is that I have to pay the entire Medicare premium out of pocket--the County pays 80 percent of my Advantage Plan, but no reimbursement for the ridiculously expensive Medicare premium I have to pay. 

I shouldn't even say that--I sound like the whiny, privileged person that I am--as problems go, having an income that's too high should be way down the list.

[LouT]

We all should be allowed some whining from time to time.  It covers us for all the times we've just "sucked it up" and went through all that we do.  

Lou

[Babs]

@LexieCat I think you and I both started SSDI around the same time.  I understand that after 2 years we would go on Medicare?  Have you yet and did they automatically reach out to you?  My 2 years will be mid July.

Babs

 

 

[LexieCat]

I'll be 65 in August, so I'll get it by virtue of my age sooner than based on SSDI (which, for me, would be at least another year). 

But as I was saying, once I'm on Medicare it will cost me about three times what I'm currently paying for my health insurance. Financially, I'd be better off WITHOUT Medicare.

[Babs]

Yes, that bites.  Too bad they won’t let you just keep what you have.  I might be in the same boat you’re in when the time comes? 

[Lisa Haines]

Lou,

  Be VERY cautious if you are on Medicare or eligible for Medicare and you do NOT opt in for Medicare "D" when offered.  Down the road if/when you may later decide you need Part "D" you will have to pay a penalty for not opting in when first offered.  Here is some info on the Medicare website that talks about this penalty - https://www.medicare.gov/drug-coverage-part-d/costs-for-medicare-drug-coverage/part-d-late-enrollment-penalty

  This actually happened to my Mom last year when I encouraged her to enroll in Part D.  She only takes one medication and which is very inexpensive.   For years she paid out of pocket for any meds and in her case it was fine.  When I became aware of the cost of Cancer Meds and because she is a breast cancer survivor, I was very concerned that she had no drug coverage and I convinced her to enroll last year.   She signed up during the open enrollment period for a plan with $12/premium - But, when her bill came, there was penalty of over $60 (each month) and after many calls, we found out it was her penalty for nor having enrolled in Medicare D for the twenty previous years (since she turned 65 and went on Medicare A/B.   A huge penalty to pay for a senior on fixed income who still only takes one very inexpensive med.     She was so upset with me and was then struck with now paying $72 a month (far more than the costs of her meds).   Everyone told her it had to be some type of mistake, so she reached out to meet with a SHINE Counselor (they help seniors with Medicare and enrollment) and this women knew that my "Dad" (deceased) had been a City Employee and that my Mom was receiving his Pension.   We because of that she then learned she had been eligible to have coverage through the City and should have never dropped that plan which she did when she went on Medicare.  Unfortunately, she does not recall anyone ever telling her should could have had coverage through them and it would include Medigap coverage.    They were able to put her back on the City Plan and she was then able to drop that Plan D plan and also the Medigap plan she was paying monthly for many years.   She saved over $200 month and sadly lost out for all the years she had not been informed.    However, IF she had not been in that  situation should would have been paying the $60 monthly penalty for the rest of her life.    She very very luck, most people would be stuck and have no options.

  The same type of penalty also applies to Medicare "B" if you do not sign up when first eligible.  The exception for Part B is IF you are covered by a spouse's Group Health plan as I was until my husband recently retired.  But, I had a huge battle with Medicare (Social Security) when I applied for my Part B due to his retirement.  I have had Medicare "A" since 2009 from being on SSDI, but never opted into "B" because the Group plan was always primary and it made no sense to have to pay for B, since our Group Plan was primary.   And under the Medicare/SS rules you CAN opt out of "Medicare B" IF you are covered by a spouses Group Plan, because that plan is primary!     I checked into this every year during his open enrollment at work and would verify with SS/Medicare that I still did not need to add "B" as long as he remained working and we were on a Group Plan.

  However, SS originally denied me Part B Coverage when I applied back in January to have "B" start March 1st, (his retirement month).    They tried to tell me I was NOT eligible and had to wait until the next "Open Enrollment" period (July), something I could not do as a cancer patient, there was NO way I could go without Coverage form March-July!    They also tried to impose a late enrollment penalty on me because I had not opted for Part B when I became eligible back in 2009 and in their files they even had a letter from me with a copy of my old Blue Cross card stating I was opting out of "B" because I was covered under my husband's group plan.     There were forms I had completed and I had met the requirement to opt out because of the Group Plan (I also had copies in our files, thankfully I am really good about keeping "too much" old paperwork, but thankful in this case I had it.    BUT, they were awful and refused to give me Part B unless I could PROVE I had group health plan for those 11 years.    And that was not easy to prove because my husband's company had been sold back in 2014 and the current HR folks (out of state) did not have access to any ofthe old HR files (no one even knew if they still existed).   After all we only need to keep taxes for 7 years, so who has them for longer?   Then SS told us IF I had the Health insurance forms that are filed with our taxes that should work and thankfully I pull out our tax record and amazingly had ALL those forms back to 2009 and faxed them off to SS, but was still denied.     In the end, the company found a former employee who knew where the old hard copy records had been archived and they actually took the time to pull the payroll records which showed the weekly insurance deductions for those years.  Once they had that proof they agreed to write us a letter stating he had full medical family group coverage back to his original start date in 1999.   We sent that off to SS and they then FINALLY gave in and approved me without any penalty, but we still were not sure if they would and were ready to hire an attorney.  I also by then had reached out to my State Legislators and they said, that they would assist me and that there was NO valid reason for SS not to accept the Tax Forms.    SS was determined to do everything they possibly could to make me pay that penalty even though I had never deserved it!    It took weeks and weeks to get it approved and I almost did run out of time and was very close to being without coverage for a short time, not something you want to face with cancer.   

As a matter of fact, it took SS so long to process this that this month they withheld four months of Medicare B premiums form my SS payment.    Crazy and SS does not use use mail or do anything electronically and the offices were NOT oepn at this time.  We had to do it all via phone, fax or snail mail.  It was a terrible process to go through and hopefully this can save someone else from this hassle and stress.  

WARNING to everyone on SSDI, IF you are in a situation like me and have opted out of Medicare B because you have coverage from a Group Plan, BE certain you keep proof of your Group coverage which you will NEED when you do eventfully file for Part B.    I can't even imagine what we would have gone through if he had worked for a few different employers during the time?   It put me under a great deal of stress and upset, I still remember being in tears talking to my SS Rep when she told me I was denied and would have to wait until July to apply.   She was very sympathetic, but it was totally out of her control  and until we had solid acceptable proof, there was no way I was getting coverage and they did not care that I had Stage IV Cancer, they were heartless.     It did work out, but it took a couple of months!!  

Here is some info on Part B Penalty and exemptions!  https://www.medicare.gov/your-medicare-costs/part-b-costs/part-b-late-enrollment-penalty

 Long story but one that is important for other to understand! 

   ~ Lisa

   

[LouT]

Lisa,

Wow!  I never looked at Part D much before.  I take two meds and pay less using GoodRX than paying for Part D.  But, (stupidly) I never considered if I have a recurrence and need chemo and other meds.  I will be checking into this now.  I'm always trying to think of things financial as my wife is in memory care (that we pay thousands for monthly) and my goal is to make sure she can get high-quality care.  After reading your piece I realize that I have had a blind spot in this regard...

Thanks,

Lou

[Judy M2]

Lou, Part D will not pay for chemo, only prescriptions (and not the Shingrix shot either!). You can compare plans online by entering the drugs you take. I do a comparison every year but always end up continuing with my current plan. 

https://www.medicare.gov/blog/find-medicare-plans

[Lisa Haines]

I take Xarelto which is a very expensive drug  (Blood Thinners) and will for the rest of my life so for me Part D is a much have.  I also dont' know if down the road I might some day need to take an oral treatment (like the TKI's) which do fall under Part D?   I know for many it may not seem worth it, but for me, it's well worth it and I do not want to have to pay a penalty down the road.  I can't imagine not having it IF you need any of the more expensive drugs. 

 I am KRAS + and we are close to finding more treatment for KRAS which may be Oral drugs, so that is another reason Part D is vital to me, but I understand for some it may not be worthwhile currently, but we never know what the future holds?  

You do have to weigh out the costs but for me, Part D is much needed and well worth the premium I am paying!  

 

[LexieCat]

Hey folks, could we possibly take some of this Medicare/insurance stuff to another thread? I'm not complaining, and I contributed to the discussion, but I created this thread mainly to document the experience of the trial--there are some other folks following the thread (aside from forum members).

Thanks! ❤️

[TJM]

5 hours ago, LexieCat said:

Hey folks, could we possibly take some of this Medicare/insurance stuff to another thread? I'm not complaining, and I contributed to the discussion, but I created this thread mainly to document the experience of the trial--there are some other folks following the thread (aside from forum members).

Thanks! ❤️

Think it's worth doing another string? We have muddled this one up something fierce.

[LUNGevityKristin]

Hi Lexiecat, just a suggestion, your journey with this trial would make a great blog! That way you can post updates and people can comment on your posts but your posts would be the main focus.  You can start a blog here: https://forums.lungevity.org/blogs/ if that is something you are interested in.  It would be pretty quick to copy and paste from this thread.

[Rower Michelle]

Who us? Muddle is our middle name.... 

[LexieCat]

Been a while since I posted on this thread--not much going on. I sent a message the other day to the research nurse to confirm we were still on for next week. She said yes--as of now, I will be going in on June 9 (next Wed.). She asked if I'd scheduled my pre-admission COVID test and I said no, no one had contacted me to do that.

So I got a call yesterday to schedule the COVID test for Monday. I asked to make it as late in the day as possible--I have my car (dented when I went in for my Zometa infusion, if you recall) in the shop to be repaired (wound up making an insurance claim--dent was worse than I thought), and I know now I'm supposed to quarantine after the swab. So I was HOPING I'd get the car back by then--I told the body shop I needed for it to be done before I go in the hospital on the 9th, but you never know if they will actually get it done when promised. So called the body shop yesterday and it's already done--I can pick it up today. So that's one less thing to worry about.

Trying to get loose ends taken care of before I go in. Chances are, everything will be fine but you never know, so trying to get some things in order just in case someone else has to pay bills or anything. Also doing some housecleaning so I won't have to come home to a mess. Neighbors are taking care of the cats and my carpenter friend is putting in new flooring while I'm in the hospital. At this point all the most important stuff is done, so just getting some of the rest on my list done to kill time before I go in. 

As of right now, mostly feeling OK. I'm preparing for the worst but hoping for the best.

 

 

[Judy M2]

Good planning. Glad you got your car back. It'll be so nice to come home to new floors. We'll be thinking of you and hoping for a good outcome. 

[LouT]

Lexie,

I'll be keeping all fingers and toes crossed as well as sending vibes and prayers your way.  Go kick some LC butt!

Lou

[Rower Michelle]

I was thinking about you yesterday- glad things are moving along.  Those last minute details always take longer than expected.  
 

Stupid question- having been vaccinated why have to be tested and then quarantined?  All the hospital staff has likely been vaccinated too.  Maybe it’s a rhetorical question….