can't stop crying
 

i can't type much - i dont think i can handle this.
the infusion center just called to tell me they have to cancel my may 2nd appt for my second infusion - they just got the doctor's May schedule and he won't be there and the other doctor on can't see me, he's only seeing a few people who have chemo that day. they cant take me till may 9th. that's 5.5 weeks after my first infusion (april 1) and they said its no big deal, people go that far apart. i dont get how they can just cancel people like this. when i make the appt, i have to plan it - take off of work, find someone to bring me, i didnt feel well for a few days after the last one, etc. i have plans the weekend of may 9th (it's mothers day weekend) that now i will not only have to cancel, but will lose the $ i've spent.

i cant stop crying. i just dont get any of this. i asked if this is gonna happen every month and she said she didn't know, she cant help it, she just got their schedule.

once again not only the unknowns of MS get to win, but the frickin' unknowns of this tysabri $hit get to win.

yes, i just left a message for my caseworker, but what's he gonna do? force them?

Your caseworker can direct you to another infusion center. Be sure to contact the present infusion center and tell them that they are going to lose your business because of their inability to keep their appointments.

I don't think that you need to cancel your weekend and lose money. Wait to see what the caseworker and the infusion center have to say.

Believe me, when the infusion center learns that they will be osing a ton of money, they will find a way to solve the problem. Money talks, and they know it.

-Vic

totally not right
 

Vic, thanks for the advice, but none of it is working. My case worker even called there. They said the doc said that I can go 5.5 weeks in between, it's fine with him. I told the woman (from the infusion center) that it's all fine and good that the doc is fine with it - but it's MY body that feels like crud, not his...and I'm not fine with it. Nothing anyone can do. To switch now means having to go further from home and no guarantee they can get me in on time either. I just don't understand any of this - or why it keeps falling on my head.

In other news, at least somewhat positive, is that it looks like my first transfusion will cost me a total of $515. The infusion place actually does not make a lot of money off of this at all - they make a total of $2700 - and that includes the meds...so they pay at least 2k for the meds.

Vic, I'm not sure why you're infusions are running so much money! I don't get that. Does your ins cover any of it? I have an 80/20 plan - so I pay 20% copay...which comes out to 515 for this.

I need to cancel my weekend away b/c even if I felt wonderful after the infusion, it still doesn't work - b/c I was supposed to leave on Thursday - and the tx is on Friday. :(

k

Ty infusion sites
 

RP,

If you are in the Alta Loma area (Rancho Cucamonga, Inland Empire, etc.), then try to got to Wilshire Oncology and they will help. They are a huge infusion center with offices all over southern CA. I bet with one phone call from your neuro they will have you in the infusion center by tomorrow.

Check them out and see if it works.

-Vic

Red, I was late this mo too. I called the hospital here that has an infusion center and was told they could take me in 2 days w/all pwork done by them. I waited - but in your case - I agree, try a large center. You can always move back.

NEW TYSABRI USERS:
Biogen is enrolling 2,500 people in a trial wheren they want to monitor long-term Tysabri user progress over a 5 year period. You cannot have more than 3 infusions under your belt so far, thus we long-term users cannot participate.

Contact the NMSS for details.

-Vic

From reading the article, the trial is being conducted to monitor the safety aspect of Tysabri. It didn't mention any data being collected to show what benefit the patients may or may not be getting from taking the drug.

I would hope that patients who have to quit using the drug because of side effects or other problems will end up in the data at the end of 5 years.

Harry

Harry,

They are. I read the approach analysis for this trial and Biogen specifically points out that people who have to quit Tysabri will be part of the data analysis. All results from the 2,500 people in the trial will be used.

-Vic

Update:

I met with my neuo-team today and we discussed my condition relative to my two main Tysabri concerns:
1. Cost
2. Alternatives if Tysabri fails

Results:
1. Cost - My team is going to discuss with Biogen directly a method by which the financial impact of Tysabri can be reduced. Gail Hartley will be doing this for me and I will let you know how it goes.

2. Alternatives if Tysabri fails - The most promising medication is in Phase III of its trial and looks good: Fingolimod. Dr. Shubin is in charge of a portion of this study and several folks here at MS World are in that trial. I do not know the technical details of the evaluation as the trial is on-going, but it looks very promising.

We did discuss medications like Revimune. Generally, this type of medication eliminates and then restores the immune system entirely. There are two downfalls to this approach: a) potential lethality is very high (10-17%, though not necessarily with Revimune itself), and; b) the high liklihood that even after the immune system is restored, whatever causes MS will eventually just start again, thereby making this approach just a delaying process with very high risks.

I will continue with Tysabri until my data are complete.

What a grand day it is here in Southern California! I could not be happier.

-Vic