First a warning -- I am sometimes without internet access for days at a time so I may not respond for a few days. Now, the important stuff.
In Feb of '07 I had surgery to remove a brain tumor which was sitting on top of the dura -- the lining of the brain. It was connected to a tumor underneath my skull which my surgeon and onc and of course lab tests proved to be a Plasmocytoma. I've since undergone radiation to remove the bone tumor and another small tumor at the top of my head. (results next week).
Meanwhile, I've had a PET/Ct which came back somewhat foggy. I had just had a lumbar puncture and it went south -- I was leaking spinal fluid and was on bed rest for 2 weeks, during which time I had that PET scan. The scan showed some "activity" in my lower spine and hips and pelvic bones. Subsequent MRI's, bone scans and even x-rays showed nothing. There is nothing significant in my blood work except for very mild anemia, slightly low creatine levels. These are non-fasting blood tests, by the way. The Bence-Jones was negative, twice. I don't have chromosome 13.
My Onc. gave me the MM diagnosis immediately after the PET and then retracted it after the MRI of the spine/lower back came back clean. He says he thinks it's just too sensitive a test, but didn't think the LP had anything to do with it. My PCP disagreed. I know that Plasmacytomas usually reoccur down the line as MM. I don't really know what to believe from them at this point. I had to remind my radiation oncologist that I had a 3rd tumor -- all 4 of these docs seemed to assume that someone else was treating tumor #3. My Hematologist sent me off for Zometa treatment which he wanted me to do for 12 months, once a month. After the first treatment, and after doing more online research, i asked about the issue with jaw-bone death and Zometa. He seemed to have overlooked mentioning it. I am now off the Zometa until my teeth are taken care of (my molar broke off 3 days before surgery).
I don't know. You would think I was in the middle of nowhere with the most incompetent people I could possibly find caring for me but this is a major American city and I'm at a major hospital with Harvard educated oncologists and some of my MD's are actually teaching at university!
What would you do? I believe the Plasmacytoma diagnosis. Beyond that -- would you resume the Zometa? I am inclined to, since it seems to strengthen the bones against MM. But what else?
Istrianka-
Respond when you can- no sweat.
I will be direct- your health situation is complex- so much so that your drs all disagree- I can't tell you what to do, I can only say what i would do. After years of conventional therapies that didn't help but only hurt, I came to the conclusion that in the future I would focus on my immune system. Whether it is something outward like exercise or detoxification or inward like nutrition or supplementation. If I ever recur or am dx with a secondary cancer, I believe that this is the path I will take.
Good luck and keep us posted.
David
Istrianka,
It sounds as though you are managing both your illness and your doctors very well. In the future, it may be a good idea to ask your doctors about known side effects for any therapy they suggest, just so side effects have been thoroughly discussed and don't get overlooked. Doctors sometimes forget to mention side effects. It never hurts to do some research, either, if you think you may be taking a specific drug in the future. Supposedly, Aredia is a little easier on the body than Zometa, but I'm no expert on either drug. If you take either Zometa or Aredia, I think it's important to ask for long infusion times and to drink a lot of filtered water during infusions to keep your kidneys happy.
From talking to other patients, I've learned that plasmacytomas are sometimes tricky to diagnose. And, Pet/CT scans can sometimes be foggy, too. If I were you, I may want to ask someone like Dr. Brian Durie from the International Myeloma Foundation for a second opinion. I think Dr. Durie sees a lot of different cases and may be able to guide you and give you some confidence. His influence may also be helpful to your own medical team.
MM is slow growing, for the most part,so that you have time to evaluate treatment options whenever they arise. I wouldn't rush in to anything unless I knew that my life depended on it. Most doctors want as many test results as they can order and conceive, but I think it's a good idea to take just one step at a time and see what each test shows. That way, you can keep things in proper perspective and make decisions as you go along.
Post new comment