Throwin up White Flag on Rituxan Also! :(

[Kati]

My apologies. I will shut up now.

 

[SOC]

My apologies. I will shut up now.

Kati, don't shut up. I appreciated your comments.

 

[SOC]

I DO feel that I was appropriately informed and Dr. K explained the risks involved. (but I was not really clued in on how much $$ it was going to cost me) Like I said when I had that first needle put in my arm I knew all sorts of things could happen and it took a lot of courage, as many know. I just didn't know that I would be perceived as "negative" or against any "greater good"...by finally expressing my experiences on Rituxan here on PR. Quite a few people have contacted me about my experience and most I just didn't respond, knowing that their experience might be a lot better than mine. But I have come to know now that I am not alone in the increased inflammitory response hell and know we are here sharing our experiences. There will be the good, bad, and the ugly... and I think info on ALL responses should be looked upon she same... As they are all a part of the beginning stages of research.. Do the people who have the bad or ugly experiences just fade away and say NOTHING? Like I said I wish I would have read any posts regarding pain syndromes getting worse as well as the cost involved before making my blind leap of faith. From now on I am gonna leave the guinnea pig stuff up to rich people...and hope they post their experiences whether they are GOOD, BAD, or UGLY on all treatments in the future, to help all of us make educated decisions.

I think it's important for good, bad, and ugly experiences with treatments be available to patients. We have a lot of tough decisions to make in the course of our treatments, so the more info we have the better. However, since experimental treatments in research projects are not available to many patients, I'm not sure how critical it is to trumpet failures in public in caps and multiple exclamation points until the whole story of the research is in. In particular, "they didn't tell me" stories can be extremely damaging to researchers.

If many patients feel they've been misled about the cost or possible serious side effects of a treatment, then there is a major problem with the doctor/researcher involved, and all of us should join in shutting down that doctor/researcher. OTOH, if it's a case of individual patients deciding after the fact that they don't like being guinea pigs after all, or the side effects they were warned about are more than they can handle, it shouldn't come across as a fault of the doctor/researcher with "they didn't tell me" types of statements.

Implications that patients weren't properly informed about costs and risks can destroy doctor using experimental treatments. We have enough trouble getting doctors to provide experimental treatments because both mainstream medicine and the general public think we are not sick enough for potentially risky treatments. There are people trolling our forums looking for examples of how we weak-minded hypochondriacs are being duped by dishonest doctors into expensive, risky, and unnecessary treatments. Do we need to feed them our best docs who have done nothing wrong?

I took Valcyte several years ago, not as a part of a research project. I knew there were risks involved, including developing new problems. I knew I could feel a lot worse before I felt better. I might not even feel better after treatment. I knew it would be expensive. I took those risks with my eyes wide open. Consequently, I was not surprised when I felt like hell for a couple of months, nor was I surprised when the total cost of treatment was enormous. I got substantial improvement from Valcyte, but I am very far from back to normal. I am extremely grateful for that improvement. I don't feel cheated that I spent a lot of money, felt horrible for two months, or didn't get a complete "cure".

I reported the good and the bad with my Valcyte treatment. I try not to pull any punches when I talk about it -- Valcyte is not for the faint of heart. It takes patience, emotional strength, and determination for some of us to get through the treatment. What I don't do is blame my doc for not telling me every single detail of what might not go perfectly. None of us knew what the exact cost would be. None of us knew every potential unpleasant thing that might happen. Most Valcyte patients don't have shingles or bronchitis. I did, probably as a part of an IRIS reaction, which not all -- maybe not even most-- patients have. Was that my doctor's fault for not telling me? No. We knew it might be rough. The details were not certain. There are no guarantees in any treatment, and certainly not in ones that have not been used extensively for many years.

There are a lot of risks involved with experimental treatments. They also tend to be very expensive. My advice is that patients stick to known, accepted symptomatic treatments if they're not prepared to handle the risks.

For those willing to take the risks associated with experimental treatments, go in with your eyes wide open. If things go badly, make sure you're placing the blame (if there is any) where it properly belongs. Did the doctor clearly misinform you? Say so. We don't need doctors like that. Did you expect perfection and not get it? Then admit your own failure to manage your expectations. Did you have unforeseen (by anyone) side effects? Tell us about them, but understand that unforeseen effects are part of the risk you chose to take.

Frankly, I wouldn't be the least surprised to have an inflammatory response or a resurgence of latent infections, or even new infections with B-cell depletion therapy. You're (temporarily) taking out a portion of your immune system, after all. The only thing that surprises me is that you were surprised.

If I could get Rituxan, I'd deal with activating latent infections, new infections, temporarily increased pain and a lot of other temporary (and even some permanent) consequences of the treatment for a chance to have a recovery, or even another substantial improvement. That's me. It's the way I am. Maybe I'm a better candidate for experimental treatments because I'm willing to take risks to get my life back -- and I'm willing to take responsibility for my decision to take those risks. I certainly wouldn't be claiming I didn't understand the risks.

 

[jimells]

Jacque thanks for telling us about your experiences with this drug. I don't quite understand some of the posts on this thread. I never thought your post was blaming the doctor.

Much harm has been caused by drug companies withholding and manipulating studies that don't support their marketing campaigns. I don't believe hiding 'negative' data helps anyone.

 

[Jacque]

I know I don't know where the idea surfaced that I blamed my doctor???? I frikkin love my doctor.... My post had NOTHING to do with him...but everything to do with my personal experience on the Rituxan. I still think that the Rituxan trials are going to help us inch forward in finding an answer for this nightmare!!!

 

[Jacque]

And in regard to the unexpected costs I was given wrong info by office staff NOT my doctor... He had nothing to do with it ... for the record ... not that I need to defend myself! I adore Dr. Kogelnick...he is doing great things... GEEEEEZE I write my personal experience and am being bashed for that... Are all online groups this outraged when someone expresses themselves??? Everything I wrote is being blown out of context and proportion, with false conclusions!!!! ( I LOVE exclamation points!!!!) I'm sorry you don't care for my style in writing!!!!!! This is my first online group experience...and I am starting to think it sucks! Altho.... there are quite a few friends whom I have met here...that I consider PRECIOUS!! Sorry if my personal experience got some of your panties into a bunch!!

 

[GracieJ]

Jacque, I am so sorry this program didn't work the way you had hoped.

You take your life in your hands sometimes posting on here!! but... candor is good. I think it helps other people keep things in perspective and make their own decisions. PLEASE keep right on posting!!

I left PR temporarily a while ago over a couple of insensitive incidents, but found that I really, really needed the emotional support, so came back. I am careful with what I post now, but also do not hesitate to use the report button if things really get out of hand.

 

[Jacque]

Thanks Gracie...gee now ya tell me!!! lol Does everyone on this site get beat up when they say they had a reaction to something, or one drug didn't work but another did, or or or? This whole insane illness is trial and error, and we all know that.

Yah have gotten quite a few posts that many people are afraid to post because they get this kind of flack from a select few here... oh well... at least I know I am not alone.... How sad tho that because of a few people many here have to be afraid to express themselves and experiences.... Very sad but I guess there are bullys everywhere in life.....

 

[Esther12]

I think it would be fair to blame the Dr/institute if it was not explained to you how much things would cost! That's part of what is required for informed consent IMO. Also, outside of a controlled trial, there's only a Ltd amount of information that can be gained from patient's reporting their responses to treatments. At this moment, I'm afraid that we need more research before money for treatment is really worthwhile.

 

[ukxmrv]

I get a lot out of the posts people make on good and bad reactions to treatment. I'd not like to see that stop unless we have a genuine, obvious and transparent reason for us not to post in certain circumstances. Even then any attempts to control what people post needs to be done with sensitivity.

We know that journalists, doctors and researchers could be looking here as it's public. That's a bad situation for when I want to report an adverse reaction. After completing a course of meds some of us are left in pain, frustrated and often have no where else to turn for understanding and help.

I want to hear about people's experience warts and all. That needs to be weighed up with the consequences of my post or the one that I am reading being used by a journalist to attack us or a treatment.

Reading the adverse reactions that people have to treatments can stop others from charging in with the expectation that it is a cure.

Really sympathise Jacque for what you have been through. It does help when I am going through my own disasters to read others experience - good and bad.

 

[Little Bluestem]

There is a ME/CFS forum in the members only Community section. That might be a good place to discuss treatment results. There are a lot of members who never post, though. I don't know how many of them have ulterior motives.

 

[Jacque]

I think it would be fair to blame the Dr/institute if it was not explained to you how much things would cost! That's part of what is required for informed consent IMO. Also, outside of a controlled trial, there's only a Ltd amount of information that can be gained from patient's reporting their responses to treatments. At this moment, I'm afraid that we need more research before money for treatment is really worthwhile.

Yes Ester I can see how you would think that but I don't blame them because when I started to go to Dr. K his clinic was not even fully moved into and they were literally just getting started - so I think there was some miscommunication which went with the situation. I was told the infusions would run me a few hundred dollars, not $1,200 ea. and I was not aware that my Blue Cross would deny the expensive bloodwork necessary. So I am hoping that this info helps others who may be caught off guard with their insurance etc. I don't blame anyone!! Where that came out of my post I have no clue. And in regard to the money being worthwhile...you are so right...like I said I am leaving that up to the rich peeps...lol and just gonna pray hard that answers get here before I am 80!

 

[IreneF]

I think it would be fair to blame the Dr/institute if it was not explained to you how much things would cost! That's part of what is required for informed consent IMO. Also, outside of a controlled trial, there's only a Ltd amount of information that can be gained from patient's reporting their responses to treatments. At this moment, I'm afraid that we need more research before money for treatment is really worthwhile.

In the US you hardly ever know what you are going to have to pay for a medical treatment. The NY Times had a front page story on this issue on Sunday.

The ritux itself costs an arm and a leg, but Dr. Kogelnik doesn't charge too much for infusions. The lab charges can be expensive, too, and patients from out of the area have to pay for transportation and hotel.

 

[Jacque]

There is a ME/CFS forum in the members only Community section. That might be a good place to discuss treatment results. There are a lot of members who never post, though. I don't know how many of them have ulterior motives.

Oh that might be a good idea... I thought the Rituxan Thread was the place to do that...duh like I said I am new to this online forum stuff...and didn't realize I'd be steppin into a snake pit by finally answering to a lot of peeps who were wondering how the Rituxan was workin for me....

 

[Jacque]

In the US you hardly ever know what you are going to have to pay for a medical treatment. The NY Times had a front page story on this issue on Sunday.

The ritux itself costs an arm and a leg, but Dr. Kogelnik doesn't charge too much for infusions. The lab charges can be expensive, too, and patients from out of the area have to pay for transportation and hotel.

I know!! I would be using a LOT of exclamation marks if I had to pay for the drug too...I think the 6 infusions would of cost somewhere near 70k.... but don't quote me on that.. But I was still looking at nearly 7k in infusion fees and racked up over 4K in labs....EEKS....gonna be payin that off for a long while...

 

[IreneF]

I know!! I would be using a LOT of exclamation marks if I had to pay for the drug too...I think the 6 infusions would of cost somewhere near 70k.... but don't quote me on that.. But I was still looking at nearly 7k in infusion fees and racked up over 4K in labs....EEKS....gonna be payin that off for a long while...

Rituximab is about $6k/treatment, so about $36k total.

 

[dsdmom]

Actually if you get rituximab via a hospital, it's ~$25k per infusion. Dr. K's fees sound reasonable - hospitals/infusion centers mark up quite a bit.

 

[Jacque]

Actually if you get rituximab via a hospital, it's ~$25k per infusion. Dr. K's fees sound reasonable - hospitals/infusion centers mark up quite a bit.

OMG....so even if the stuff did do miracles...who in the world could afford that and what insurance would pay? yikers Yah Dr K is very reasonable...it just really adds up...esp when you start adding new meds to the mix now that I have "new" issues, and now no insurance.

 

[Jacque]

Rituximab is about $6k/treatment, so about $36k total.

OMG... Sorry about that ... this NUMBERS thing with me is so so so bad... I can't keep #'s in my head...but I could have sworn when I had my first visit that the nurse told me around 70k if I had to pay.. I don't know it has been over a year ago... I can barely remember yesterday...

 

[dsdmom]

Jacque, you are probably right about how Dr. K was charging for it...my point was just that if someone doesn't go to Dr. K (or another dr who charges just cost), a hospital setting is way more expensive.

At any rate, I absolutely understand your frustration and think you have every right to talk about your experiences here. Don't be deterred!