{Correction 02/13/2013): 6 mo f/u MRI 06/2012 showed a false pvns recurrence. It was proven during f/u surgery 12/14/2012that the mri was showing scar tissue and not pvns. After you have surgery the mris become more difficult to read accurately. After the 6 mo f/u mri I had two more mris done showing that the (false) pvns was remaining stable (unchanged) that was the clue that it was scar tissue and not pvns.} The tests that I referred to in this article all came back good. I do not have an over or under active immune system nor anything besides osteoarthritis from age and pvns.
Being a Pioneer
I am well aware that we are all guinea pigs and it doesn’t matter what treatment we choose. On a positive note the more data that is collected increases the chances that a common link could be found. I commend everyone who is willing to try adjuvant treatments because you are the pioneers that may someday make a cure possible. Note please make sure your physicians are sharing your information (positive and negative) with researchers and not just keeping it in their private files.
MRI Report of a False PVNS Recurrence
Being a Pioneer
I am well aware that we are all guinea pigs and it doesn’t matter what treatment we choose. On a positive note the more data that is collected increases the chances that a common link could be found. I commend everyone who is willing to try adjuvant treatments because you are the pioneers that may someday make a cure possible. Note please make sure your physicians are sharing your information (positive and negative) with researchers and not just keeping it in their private files.
MRI Report of a False PVNS Recurrence
Why did my treatment regimen fail when others (approx. 80%) with the same amount of PVNS, damage and treatment remain in remission? During surgery the joint was visualized arthroscopically then an open complete synovectomy was done. My orthopedic oncologist is a top rated surgeon familiar with pvns. She removed all visible signs and areas that showed on the mri. I followed up with 18 treatments of 200 greys each which would have disabled . My six month follow up mri showed a new area of recurrence. Something is making my body more susceptible to the pvns and until that is corrected I’m afraid it will continue to recur, destroy my joint as it has caused the chondromalacia to worsen in just one year even with surgery.
The cellular composition of diffuse pvns is exactly the same in each individual so this means that pvns itself has the same strength and destructive properties in everyone. What makes some bodies more susceptible to a recurrence? I have arthritis in both knees and throughout my spine that is well out of proportion to my age and lifestyle.
I’m working with a research arthritis specialist who is running many tests to see if I have some type of defect that makes me more susceptible to arthritis and or pvns. I am also working with an immunologist who is checking to see if there is a link via the immune system. some of these blood test take a month to get the results so I will post any information that they may provide. For now the doctors are trying to build up my body as much as possible immunologically by addressing my allergies (they have already done allergy testing for which are minimal), with diet (I’m looking into cancer diets), and supplements including Vit D because it was very low and low vitamin has connections to tumor growth. Hopefully along with what they find out from the blood tests I will be in better shape to resist future tumors (recurrence) after my next surgery.
I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.
Hi - My name is Patti and I just signed up for the UCLA clinical trial for PLX3397 - I'm a little ambivalent about it, but this is PVNS, so I guess I need the treatment. Thank you for your comments. I had an artificial knee (Zimmer high-flexion unicompartmental) put in a couple of years ago and that's when they first realized I have PVNS. The knees now are great - I have no pain at all from that - just swelling from the PVNS.
ReplyDeleteYAY for you not having a recurrence!! Don't worry about if/when you eventually get a knee joint replacement. They are really good now if you have a good doctor.
Patti, thank you for your comments. I commend people for participating in clinical trials and I wish you the best with the plx3397 safety study. I’m alerted by the comment “I guess I need the treatment.” I want to make sure you understand what you are signing up for because the plx3397 is a study to determine if plx3397 is safe to use in humans. This study is designed to measure incidence of adverse events, first-cycle DLTs and clinically significant changes in vital signs, ECGs and clinical laboratory tests.
ReplyDeleteAfter a treatment is tested in the lab or on animals, it enters a phase 1 trials on humans.
Phase 1 clinical trials are done to see if an experimental medication or treatment is safe. After a treatment appears safe at the end of a phase 1 it advances to a phase 2 clinical trial.
Phase 2 clinical trial: After a dose has been determined the next goal is to evaluate whether the drug has any biological activity or if it is effective. If a drug or treatment is deemed safe in a phase 1 trial and effective in a phase 2 trial, it will then enter Phase 3.
Phase 3 clinical trials are much larger, and are done to see if a treatment is not only safe and effective, but works better or has fewer side effects than treatments currently available and if it is of value in clinical practice.
They have included the pvns group into this study but it is far from being a treatment for any condition let alone pvns. We need people in clinical trials and I commend them for doing so but it must be made clear to the patient whether they will benefit or not and how so. Practitioners don’t know the risks yet and that is the reason for a safety study. You are volunteering to identify those risks for everyone else. I just wanted to make sure you understanding what you are signing up for.
People tend to not be aware that many institutions and physicians are paid to enroll people into clinical trials. This is not necessarily wrong but there is huge money behind these trials and recruiting participants.
I am not a doctor and these are just my personal opinions. I wish you the best and thank you in what ever you decide. Be well.
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ReplyDeleteThank you for your comments. I hope your PVNS continues in remission. I have been spending a lot of time trying to learn how to think about this in a simple and quantitative manner. I have not been able to find anyone to talk to about it at a significant level, so thanks for your interest. What I have arrived at is sort of a cost/benefit ratio: possibility of cure vs. possibility of damage from treatment. I think both are less than 50% chance, but the possibility of cure is *very* small - so the net benefit may be something smaller than 0.1.
ReplyDeleteIt's beginning to look like I will opt out after all. The more I look at it, the more there does not seem to be an upside (for me) for inclusion in this study. If I had a limited life expectancy, then since there is a good chance that this drug would extend it, then there would be a real upside. But this is not the case.
I am a scientist myself - that is the only real reason I was considering involvement (i.e., to benefit others), and events seemed to be taking me in the direction of the study. But I am beginning to realize there is risk of harm, and I live alone and am 58 - I am not sure I want to take that risk. Also, your surgery was successful and if I have a synovectomy that is successful for at least several years, the state of knowledge will progress to the point where a drug may help.
Did you have radiation treatment following surgery? The Oncologist in the PVNS study himself said to me that the key is to have a really good surgeon who will remove *all* the synovium. So I believe now that surgery is my best option. The surgeons I have talked to have not favored radiation. One surgeon will replace my unicompartmental knee prosthesis with a "sports-rated" total knee, the other would use a late-stage cancer knee, or else incise front and back of the knee to do an open synovectomy. Is that the approach your surgeon used (front and back)?
...also, I cannot find any significant amount of data online in either Google or Google Scholar about plx3397 - the proportion of people hurt long term by it during Phase I. They did give me crude statistics with very large error margins.
ReplyDeleteDoes this constitute playing a "loosing game" - the best I can hope for is that the PLX3397 does no long term damage? :-/
ReplyDeleteHello Patti, Thank you and I also hope that I remain in remission especially since I just had a partial knee replacement and for the first time in over a year I am not in any pain.
ReplyDeleteIf you go to the top right corner of the blog: Click on POGO Frog which is located under "Search Engines" When the page comes up put in plx3397. This will connect you to a lot of information about plx3397. I understand wanting to take help others through research and have done so on many occasions but if I am going to risk harm there has to be a personal payoff.
I had an open synovectomy only in the front and did have radiation treatment 6 weeks afterwards. My surgeon said she removed all visible pvns but that it only takes one remaining cell to reseed and start the pvns process all over again. I decided to have radiation treatment because I was told in my case it would reduce recurrence from 40+% down to the teens. There has been some information being passed around between professionals/patients concerning serious secondary cancer risks. Once again I am not a physician but so far no one has been able to substantiate this theory with hard core data. To the contrary there hasn't been any reported cases of a secondary cancer forming after pvns radiation treatment. "Ever!" The level of risk as explained by my radiology oncologist..."you are much more likely to suffer from a serious adverse reaction to anesthesia during surgery than to experience a secondary malignancy caused by PVNS RT." There are complications and risks associated with all treatment including repeated surgeries.
Curiously many of the physicians who are damming RT promote chemotherapy drugs, which can have immediate and serious side effects, some of which your body may not be able to fully recover from. RT is costly, has risks and is not for everyone. Some people have high risk cancer profiles and in their cases RT would not be a wise decision for them. Only a personal assessment from a radiology oncologist could determine if you would be a good candidate.
I'm unqualified to assess if the PLX3397 program is a loosing game for you. Only your physician and yourself can come to those conclusions. I can only present information that has been generated by professionals in the hopes of raising questions that an individual may not have originally thought of. I am all for research but more importantly than the known risks are the unknown risks. Knowing that healthcare is huge business and not immune to corruption I want to know how and if the doctors and institutions are being compensated to enroll participants in studies...due to the fact that this could cause a conflict of interest.
Thanks again for your comments. It sounds like you have a good game plan. With all the above being said. The general data has been showing that all adjuvant treatments are weighing in nearly the same as far as risks and benefits. I say this very loosely as general data does not take into account an individuals risk profile. Wishing you wellness and a speedy recovery.
I wish I could find doctors like yours. I don't feel like the UCLA doctors are being honest with me - there are too many inconsistencies in what they are saying and I feel like I have to try to pin them down as to their reasoning and they don't like explaining themselves. But they seem to be the only game in town for PVNS.
ReplyDeleteThanks for the POGO frog. I didn't know about that.
Patti
I do know that doctors have "pet" therapies - and there is a vogue and style, and treatments go in and out of vogue. I saw radiation treatment papers mostly from China, so maybe there's a component of "Not Invented Here?" I do trust a local surgeon but he admits to never having treated PVNS. According to the doctor giving me the PLX3397, all I really need is a "very good" surgeon who is able to thoroughly remove the synovium. But as you point out, not all the synovium needs to be removed! So I feel like I'm diagnosing/doctoring myself. This is a little scary and I don't know if the fear is due to "I can only blame myself" if things go wrong, or simply my own incompetence.
ReplyDeleteHi Patti, Sorry that you are having difficulty with your doctors. I've had many health issues and for year felt like I had direct my health care. I'm alive today because I had access to some of the most talented doctors in the world. So they set the bar pretty high for other doctors to follow.
ReplyDeleteIt took me three years to find a primary care physician who meets those high standards. Honestly, I was blessed to have found my PVNS and knee replacement surgeon here in my home town. I don't believe in doctor jumping but if you'r not satisfied try to communicate your needs to your existing doctor, if he won't comply then find another doctor who will meet those needs and fire the one that you're dissatisfied with.
It's difficult to comprehend and painful to realize that doctors are in a business first and foremost and some care about their product and others don't. Very few doctors would be in the medical field if their wasn't the high financial payoff and the status associated with the profession. When I was critically ill in the hospital, I actually had a doctor say "do you really think I give a shit if you live or die?" I was concerned about side effects from a treatment he was giving me and spoke with the nurse. The nurse twisted and lied about what I said and told him something like "he's going to kill me." I don't care what he was told. He was totally out of line. Within an hour of him speaking with me, I coded due to the treatment that I was questioning. te practice he worked for fired him and I learned my lesson. Speak up and hold firm because it is your life and you will be the one who suffers the consequences of their mistakes.
My whole point is that medicine is a business. Most doctors aren't friends and honestly have no allegiance to their patients. If you quit paying them, they will quit seeing you. They are a pay for service employee of yours. The sooner people realize this the better healthcare they'll receive. This all seems harsh and don't get me wrong most doctors care very much about their patients but at the end of the day it is a business. If you're not satisfied find a new employee.
I've received such good healthcare and results partially because I set high standards and cherish and praise the doctors who also have high standards not big egos. The other part of my success has been to research topics and be treated with evidence based medicine and not random opinions or vogue treatments. I certainly don't have all of the answers and I can only offer a layman's view as a consumer. After years of being very ill and about 27+ surgeries, 5 codes and five months of hospice and working in the health care field...I've seen about everything there is to see good and bad in medicine. Where there is money to be made there will be treatments available for consumption, so just be careful and do your research. I wish you the best and hope you find the type of doctor you desire.
Thanks for the comments and discussions. Yes, there is profit motive and ego at play. My mother was a nurse 1930 - 1975 and the stories she told about the doctors! I am looking for that "lucky break" of an arthropod who isn't just swapping knee-parts for people. Unfortunately, the oncologists are treating dying people, so they aren't that concerned about the "relatively small" health perturbations of mine compared to the invasive carcinomas of their other patients. I'm still looking! But it appears my choice will likely come down to a dice-toss: that of some random surgeon doing a synovectomy + joint replacement, or staying on PXL3397 until some serious side effect shows up. If I go with surgery by a "good surgeon" - I have a 50:50 chance of being PVNS-free. So for now, I will continue looking for a surgeon.
ReplyDeletehttp://www.youtube.com/watch?v=RbK8CJavLJ4
Patti, I wanted to make sure you know about the Facebook "PVNS is Pants Site." It's a very supportive group for people who are dealing with pvns issues. There are a few others from California who have found good pvns surgeons. I would suggest becoming a group member if you aren't already and asking others for the surgeons that they have been pleased with in California. Sheila Piner has been keeping track of all the data and is a wonderful resource. I'm sure others have referred to having surgeons at UCLA.
ReplyDeleteIf that's your hip in the video, ouchie. It looks pretty unhealthy. I hope that the PXL3397 is being helpful. Let me know how that goes for you. Sometimes it does take quite a while to find a physician that you trust and works well with you. It took me three years before finding my primary care doctor, two years of searching for a pain management doctor, and during that time, life was a series of self diagnosis and treatment. I understand the loneliness and other feelings that are evoked when searching for a physician. They not only need to treat us physically but be able to treat us compassionately as battle weary travelers. I dread having to find all new doctors when I move to Chicago in a few months. I'm confident that you will find the type of doc that you're searching for. Be well
CJ - Thank you for the information! I am on facebook and am checking that group out. The PLX immediately shrunk my PVNS - my knee has not felt normal for a decade, and now, even with the unicompartmental knee replacement, it feels essentially normal. The trouble is I can't taste anything, and I don't know what the future holds for the drug - I would prefer simply having surgery, but I know that's dicey. They do check my blood thoroughly, but who knows what else it might be doing (besides turning my hair white)? I guess I should just enjoy this respite from pain, but if I could get rid of the PVNS by surgery, then I would not have to take this powerful drug, and could taste my food again. I would be free to be healthy, and not a slave to the drug companies. Weird, huh?
ReplyDeleteIt's been good seeing you on the PVNS IS Pants Site. Sorry about the delay in response. I've been ill since the beginning of June and I've fallen behind in my correspondence.
ReplyDeleteI'm not a doctor, but I can't believe your doctor has allowed you to stay on this drug with just one of these symptoms not to mention all three. This is were I become very angry. These are not small side effects. The PLX3397 is causing visual and non visual damage in your system. They will tell you that the side effects will go away once you stop taking the drug (the visual ones may do that, but what about on a non visual cellular level), the truth is they don't know, it's a study to find out information. You or I and most likely your doctor has no idea what type of long term damage that this is causing. They get sold on the effectiveness of these drugs by the pharmaceutical companies (sometimes with tweaked data) and most of time they don't question the long term safety because of the data that has been presented. They aren't going to get sued, because by taking part in this study you have most likely signed your rights away. Look at the paperwork very carefully. It's usually hidden well within the wording. I appreciate people taking part in studies because sometimes it gets us closer to a cure, but not at the expense of their health. I'm not saying that PLX3397 is wrong for everyone, but you seem to be having some serious problems with it and I would at minimum get a second opinion. Like I said, I'm not a doctor, but this concerns me deeply. I wish you wellness and the best but I think the trick is to consult your doctor and possibly get off of the PLX3397.
Hi CJ - I just thought about you tonight. I wanted to say thanks again for your help and suggestions - especially about the PVNS FB page. I found there a couple of good surgeons with a lot of PVNS experience, and that would not have happened if you had not told me about PVNS is Pants. So thank you. I met with a doctor at Cedars-Sinai who impressed me as knowledgeable, skillful, and honest (that was a breath of fresh air). So this is a good choice.
ReplyDeleteThanks Patti, I'm so happy you found a surgeon. This is a very good informational site for lay men and physicians, but the PVNS IS Pants site on Facebook has unlimited resources of support, which I truly appreciate. Knowledge is a powerful engine but emotional support is the gasoline that keeps us running and moving forward.
ReplyDeleteThanks for sharing the post. It was really helpful.
ReplyDelete