Building Resistance to PVNS Tumors

{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

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.

PVNS Questions to Ask Your Doctor

Questions to Ask at  your PVND Doctors Appointment:

• What type of experience do you have with PVNS? diffuse, nodular, open/arthro, clinical trials
• What type of PVNS do I have? diffuse, nodular, mixed, intra-articular, extra-articular
• When will biopsy be taken, how long for the results and will surgery be done at that time? 
• How has this disease affected my joint? what damage is the mri showing if any?
• What are my treatment choices and which is the best treatment for this type of PVNS?
• Do you prefer open vs arthroscopic surgery and why? How many have you done? Outcomes?
• Will I be given a nerve block along with general anesthesia?
• Do you use staples or sutures to close the incision and why?
• Knee joint: will a continuous passive movement machine be available after surgery? 
• How long will I be in the hospital?
• What will I be given for pain management?
• When will I begin physical therapy and for how long?
• Will I need crutches or any other equipment after surgery?
• When will I be able to return to work and normal activities?
• What are the risks of delaying or opting out of surgery?
• What will your long term follow up plan for monitoring the PVNS be? Check ups/MRIs
• Are there any complementary or alternative therapies that I should consider? radiation internal/external, chemo, cryotherapy, homeopathic?
• What are the risks and possible side effects of each treatment including long term effects?
• Are there any clinical trials that would be appropriate for me?
• Do you recommend any herbs or other supplements- such as fish oil or glucosamine?
• What should I do if my symptom worsen?
• What can I do to decrease the discomfort?
• What can I do to preserve my joint?
• What kind of out-of pocket expenses can I expect; are payment plans available?

Questions to ask the Doctor

From: CSL Cartoon Stock

I saw the brainy doctor yesterday....as her staff describes her. Actually her biography is absolutely amazing and that is why I chose to interview her. Yes, I interviewed her to see if I wanted to hire her to be my physician. Just because a surgeon is willing to take your case doesn't mean that they are the best doctor for you in the long run. There are many things that you must consider.

What distance are you willing to travel and how often. If traveling a long distance... after surgery when would you be able to comfortably return home and who would you follow up with. I'm learning quickly that it takes a team to manage this disease. A primary care who coordinates all aspects of your care, a surgeon, radiation oncologist and a physical therapist. Your life may depend on how well you get along with your doctor and the staff.

Story Time:

A few years ago I was admitted to the hospital with septicemia. My internist had another physician covering him on that day. Long story short, the physician on call ordered an antibiotic and after it was running into my IV for about an hour, I started to get itchy and that feeling  of impending doom overwhelmed my body.  I've had allergic reactions before and notified my nurse of my symptoms and concern that I may be starting an allergic reaction. She called the doctor who said that I could have some Benedryl but insisted that the antibiotic continue to run until he could see me in the morning. I took the Benedryl and tried to relax. A few minutes later the itchiness had increased with very slight difficulty breathing but now it felt like adrenaline was pouring into my system. I asked the nurse to turn off the IV antibiotic and to call the doctor...she said, she couldn't turn off the IV but would call the doctor. 

After speaking with the doctor again she informed me that the antibiotic had to continue to run until the doctor could see me in the morning. By this time I was having more apprehension, itchiness and slightly more difficulty breathing. I ended up turning off the IV and said "I can't tolerate any more of this antibiotic and it needs to be changed. He isn't listening and I'm not going to let him kill me." Soon afterwards the doctor came into my room and I told him that I couldn't have any more of this specific type of antibiotic because of my symptoms and fear of going into anaphalaxis if I continue. He said in a very angry tone "If you don't let us restart that IV right now I'm discharging you to home and you'll be dead in a few hours.  After the statement that you made to the nurse about me trying to kill you...do you think I care whether you live or die? Do whatever you want because I honestly don't care."

Feeling very ill, alone, completely worn down, in tears and against every instinct, I foolishly consented for the IV to be turned back on. Within a few moments I was having great difficulty breathing, hives were emerging and my hands were blue. I frantically rang for the nurse multiple times, she never responded. I turned off the IV again and as I took my last gasping breaths I hit the code button on the wall and fell to the floor unconscious. In a nutshell, I awoke in the ICU after a severe anaphalactic reaction, very ill with septicemia and now a chest that felt like someone took a bat to it. I almost died that night because of personality conflicts and I was too ill to fight with the doctor... even though I knew restarting the IV could have deadly consequences. Yes, he was fired from my internists practice and the nurse was put on report. 

This was a very highly skill physician who I had seen in the office previously and knew he didn't like me and I didn't like him. It was just some type of negative chemistry and my instincts told me to stay away from him, but he was just there as backup for my physician. It's important to listen to your gut feeling and make sure that you trust and like your physician and the others in his office. I have dealt with many physicians and compatible personality trumps skill any day. Of course there needs to be a balance.

Don't underestimate the financial aspect of health care....can you afford to be treated by a specific doctor.

Questions to ask during your doctors appointment:

• What type of experience do you have with PVNS?
• What type of PVNS do I have?
• Is a biopsy required to make a definitive diagnosis? When will the biopsy be taken and how long for results?
• How has this disease affected my joint?
• Can it affect other parts of my body?
• What are my treatment choices and which is the best treatment for this type of PVNS?
• What are the risks and possible side effects of each treatment and long term effects?
• Will I need surgery or will I need it in the future?
• What are the risks of delaying or opting out of surgery?
• Are there any complementary or alternative therapies that I should consider? internal or external radiation
• Do any clinical trials or research support these alternative therapies?
• Are there any clinical trials that would be appropriate for me?
• Do you recommend any herbs or other supplements- such as fish oil or glucosamine?
• What should I do if my symptom worsen?
• Is there medication that I can take on an as-needed basis to decrease the discomfort?
• Would exercising make my condition worse or would it help it?
• What can I do to preserve my joint?
• About how much would surgery cost?
• What kind of out-of pocket cost can I expect?
• How often will I need checkups?
• Will I need physical therapy after surgery, when will it begin and for how long?
• How painful is each type of surgery and when would I be able to return to normal activities?