I am Susan , Denys little sister and caregiver when she requires one
My sister sent this email out today. I am very worried about the Plasmacytosis the Dr. found.
Has anyone had this before, and does it mean the Velcade stopped working?
Denys wrote:
My Tampa oncologist has lowered the dosage on the chemo, but it is still persisting the pain in my leg.
I saw my oncologist today, and it was bad news. Before he could truly determine whether I had a neuropathy from the chemo on my left leg, he had me undergo an MRI. He told me today that the MRI showed a mass in my right pelvis. Of course I have multiple lytic lesions (like holes) there since the beginning, but the Myeloma has formed a plasmacytosis. It is already 7 centimeters. He asked if I was in pain, but I am not. He said we would watch it and if it grows I would need radiation. Neither of us wants that!
I get depressed and angry so much because, quite frankly, I am not ready to die and I am so scared of what a cancerous death encompasses. If it weren't for my back and leg, I would feel pretty good...not like I have cancer.
The other problem is that every month when I begin a new cycle of Velcade I must take two vials of blood, which UAMS provided me with and have it centrifuged for a specific length of time, pack it up and haul it over to Pak-mail and 24-hr. it to UAMS. Supposedly this is to see if the Velcade is still working. My oncologist in Tampa does not have blood services, and I had a hard time finding someone to centrifuge the blood drawn by my oncologists nurse. Remember I have a port specifically for drawing blood because my veins are really lousy. Most people do not want to bother with a port so it wasn't like I could have them draw the blood and then centrifuge it. I finally got lucky and made arrangements with the lab supervisor of the hospital here to do the centrifuging...As it stands on my first chemo day, I have to go to the oncologists office have them draw the blood, run over to the hospital with it and wait while it is centrifuged, then drive over to a pak-mail and pay $40 for 24-hring the blood, drive back to the oncologists office and then start the chemo process! Needless to say it is an ordeal. The best part? The nurse at UAMS told me the blood sample was no good! On top of that? My Tampa oncologist looked over the instructions that come with the vials and said he could do all of these blood tests here!!!!!! Now I am wondering whether this is unnecessary or what...The Tampa oncologist told me he will be calling the UAMS oncologist about this and also about whether they may have overlooked the mass in my pelvis..Am I complaining? You bet!!! The oncologist here also said that there is another drug administered with my chemo drug, Velcade, which is showing even more promise. He would like to see me add it to the velcade.....another reason he wants to speak with my UAMS oncologist. Although he may be right, and two heads are better than one, working with 2 very good Myeloma oncologists is daunting. It leaves me the patient thinking that ego's are also at work here.
I want to say that I have had many setbacks, and although I have good and bad days, I am constantly at work with the goal of some sort of remission. The good news is that I have not needed platelets or blood since I started Velcade, and that the bad immunoglobulin levels (IgG) in my plasma is still coming down. It was once as high as 3180, and today it is at 1080....There is a chance that the chemo could also reduce this mass and I really hope so because I do not want radiation if I can help it. For my dear friends at The School of Social Work, I am going to try and get there this week..Wait till you see my hair! Who said it comes in differently? It is curlier than ever, and I fear with a little more growth I will look like Harpo Marx! Talk about "salt & pepper"..Either the cancer has grayed me or I was so colored I never knew how much gray I had!
Well, this ended up being longer than intended...and I am tired, but feel good about talking to all of you personally....Love to all of you from me,
Denys