Have sent my records to JH for HiCy

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Have sent my records to JH for HiCy

Postby ljm » Wed Feb 06, 2008 6:55 pm

I want to agree with everyone who said the team at JH is incredible. I phoned Carrie Trecker, got phoned back by one of the doctors on the team, who spent more time reviewing my status/symptoms than my neurologist has in total over two years. His careful detail made me feel very positive about the treatment and I'm waiting for a cancellation on their schedule to fly out to JH for an full appointment.

I actually have minimal disability (none that you would notice) but my sister's MS is burning through her life and there is hardly anymore of what she once was. I decided to go on copaxone last month largely so that my insurance (BlueShield) might see the incentive of financing what I understand is now $40+ with an additional $40+of headroom required in insurance policy in case there is any mishap (I hope that was the right call, can't really ask Blue Shield what they think).

Coincidentally, JH said, as another person posted, that they are considering recommending "maintenance" therapy of copaxone after HiCY as it appears to help retrain the immune system.

Thats about it. Will post again if I get to JH.
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Postby HiCy » Thu Feb 07, 2008 9:58 am

ljm,

That is great you are taking the step to pursue Revimmune. I wish every day that I had learned about this a couple of years ago being in the state that you describe yourself. If I had to add up my bills I would estimate that with follow up MRI's the bill will be around $40K by the end of the year. I went though the process with basically no issues but if you did get sick and wound up in the hospital the $2K+ per night plus meds could add up pretty fast. The insurance is still making out since I was on Tysabri at $4K per month. I have been off tysabri for five months so they have made back half their investment already. Good Luck!

HiCy
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Just waiting for health insurance approval

Postby ljm » Sun Jul 06, 2008 5:49 pm

I went to John Hopkins last month for my appointment with the Revimmune team. It went well, they approved me for the therapy, now just waiting to see if BlueShield will cover the costs. The team seemed to feel there was a reasonable chance that the treatment will be covered. I have minimal disability but I have a strong family history of the disease being very aggressive. I think it will be a few weeks before I find out about the insurance.
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Doing HiCy now

Postby RedPenguins » Sun Jul 06, 2008 7:50 pm

Hi,

Just wanted to let you know that I have Blue Shield insurance and I received approval for HiCy within 1 hr of them receiving the request from JH.

I am actually at JH now - just finished my four days of chemo....and getting ready for the rest of the ride.

Good luck - and stay on top of JH in getting the paperwork submitted to Blue Shield - it took a while for them to get my stuff sent to BS, but once they did, it was approved immediately.

~Keri
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Postby chrishasms » Mon Jul 07, 2008 4:34 am

As far as I can tell if you get in for a first appt you are in.

Your insurance will say yes if it's same as Keri's so thats no issue.

Start making your plans.
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Postby ljm » Tue Jul 08, 2008 4:23 pm

kyle, can you clarify, a six month wait for the initial appointment... or insurance approval...or for the treatment?
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Postby ljm » Tue Jul 08, 2008 5:05 pm

Kyle, regarding that wait, I've sent you a PM with some ideas
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Postby RedPenguins » Tue Jul 08, 2008 7:11 pm

Kyle - my only advice is to stay on top of JH - make it as clear as possible to the staff that the wait of 6 months is horrific for you....that you are ready to come out now to meet with them. I was originally quoted a long off appointment, but it changed to a very close appointment time. For me, this treatment wasn't just an option that I was exploring or considering - for me it was I wanted it and unless the docs had compelling reasons for me not to do it - well, then I was having it done as soon as I could.

I'm also a slightly assertive former New Yorker - and I know that may have come out in my discussions with the staff at JH in regards to scheduling that first apointment. They also said that if they had to pencil it in right then - it would be months down the road - but more likely I would receive an earlier call. I had even told them that my bags were packed - and as soon as they called me, I would be on the red-eye flight from Los Angeles and in their offices by the next morning! I didn't care and I couldn't wait. I was there.

Well, maybe I put out some positive forces into the universe and those that were supporting me really also sent their arms up in suport of this....and surely something hapened. JH received my records on May 5th (roughly). May 16th I spoke with Dr. Hammond (wonderful doctor who spent time discussing this with me) - though he told me there was a wait of a few months. I told him this didn't work so well for me b/c the only time I had caregivers available to help me was in the summer at some point. He said that there was so much going on there right now. Well, a week later, I received the calls from Dr. Brodsky's office (oncologist) and Dr. Kerr's (neuro) office - to set up appointment dates. Oh, one other thing I said was that if I had to fly out twice from LA, I would do that. There was concern and issues with coordinating all of the different people we had to meet when we came out here. Originally, it came out that they wanted me to meet one set of docs on June 2, then come back for June 16th meetings. I said okay. That gave me about 10 days to get packed for the first trip. But then I put in a sweet call to some people to see if we could somehow make it so that the appointments could even be slightly closer together. like even if one set was on the 2nd, could the second be within 7 days or something. Well, when they got back to me - they had somehow managed to get both of my appointments on June 2!! So right there - within 1 month of JH receiving my records I was in.

Met with the docs, told I was a great candidate...and now we go for insurance approval. I asked how long that would take. They said up to 4-6 weeks. I said uh-uh...Blue Shield is much faster. I was leaving with the intent of returning to Baltimore at the end of June/early July for my treatment. As it turns out - JH took a lot longer to submit the request for treatment to my insurance company than it took for BS to approve it. BlueShield approved the request in an hour. It was set. I was to return to Baltimore the end of June. I came out here for 2 days to relax....and then on July 1 had my first appointments, July 2 I signed consents and met with the IPOP nurses, and July 3 - had my hickman catheter placed and started my first dose of chemo that night.

I say stay on top of the people. Make friends. Don't nag. Though, I wonder where the line is in between nagging and being totally annoying. I don't know - but I think I didn't cross that line. Besides when I finally came out to visit, I brought candy. Yeah, a little bribery to get myself some chemo!

I had been somewhat flamed on the boards when I wrote about how much I wanted to get in and that I'd do what it takes. But you know what, every time in the past when I have left things to figure out on their own or for someone else to do their jobs - it doesnt happen or it gets put on the bottom of the pile. I read someone who used the term "I didn't have the wait" - or "I was out of wait" - well, that fits me, too. I dont have more wait. So, I made it happen.

My advice, in summary, just stay on top of things. If you feel this way - let them know you are ready and waiting. If they get a cancel, you want it. Also know that the figure of 6 months may not be accurate and you might get a call sooner. But even first - contact Carrie to make sure they have your records and see if they think you are a good candidate based on that info. Then you can ask to speak with Dr. Hammond - he will tell you more and I wouldn't be shocked if you can speed up your process.

Although, at the moment I think they are being bombarded by requests for HiCy, probably in response to the latest research released. As I sit in my apartment here in Baltimore, I know first hand that there are 5 of us MS'ers going thru the treatment as of right now. (4 finished the Chemo days, one just starting tomorrow.) Pretty neat.

Good luck to you Kyle....


~Keri
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