New Scan Reports

I’m HOME!!!! The biopsy of my bone marrow is done. Nothing more to do now except to wait for the results. Unfortunately, that will be 2-3 days.

Just in case anyone reading this ever has to have a bone marrow biopsy, I thought I would post the experience here to allay some fears and give some advice:

First, the hematologist (who I thought would be the one doing the biopsy told us that at Mayo, they have a “team” who do 2000-3000 of them per year and they are “slick” at what they do. He said, that we didn’t want him to do it…that he can do it, but not frequently enough to be as good as the “team”. Quote: “You don’t want a part -timer doing this.”

So, it is very important with a bone marrow biopsy that it is done by someone who does a LOT of them..

We arrived at the center in the Gonda Bldg at Mayo where they do such procedures at 12:45 after not eating or drinking a number of hours. They did all the usual checks of BP, temp, and questions, question, questions to plug into the computer. Then, there was the IV. The nurse looked and decided against making the attempt herself since I told her that there have been difficulties in the past. The guy, a nurse, who was to do the procedure (yes, a nurse….obviously well-trained in doing this) came in and put in the IV.

I thought that I would be changing into a “gown” but no, I was to leave on my street clothes. Remarkable.

I was sitting in a chair with siderails..which had the capability to go into a full recline. I was wheeled in that chair to the procedure room, that was very small. It was just the nurse doing the procedure and his anesthesia assistant who set up the sedation and handled that part. After about 5-10 min of getting tubing in better places they proceded to get me in the right position.

I was asked to lie on my right side with my back up to the side rail (after I was put into a full recline). Once they had me just right…they adjusted the waist band of my jeans to reveal the upper part of the hip bone. ..The sedation began gradually, to see how much was needed to get me to the point that I did not talk back to them (good luck on that).

The whole procedure was no more than about 20 min., and I was awake before leaving the procedure room. I was then wheeled back to the holding /recovery room…back where I started…..where my husband was waiting. I stayed there about an hour….ate some toast with jam and drank some pop…and was dismissed to go home. WOW!!!

The procedure itself involved a small, sixteenth of an inch cut in the skin over the hipbone. They also numbed the area with a local anesthetic. They insert first a needle into that cut and push it into the bone where they aspirate bone marrow. After that, they with draw that needle and then use another kind of hollow needle to get a core type biopsy of the bone marrow, which will be looked at to see the bone marrow as it is in my bone….not all mixed up as it is in an aspiration.

They put a pressure bandage over the area where the cut was made….which will stay on 24 hours. At that time, it comes off and IF I want to put a bandaid on it, I can. They said it may ooze slightly for a while, so I might want to put a bandaid on. However, I am allergic to most adhesives that are on bandages and bandaids. I’m going to have a hard enough time with the bandage they already put on it. The allergy causes really bad burning and can actually blister my skin. Obviously, most people don’t have that problem. I may just wear old clothes and not worry about it after I take off their bandage. we’ll see. Some areas of my body are more sensitive to the adhesive than others.

So, upon dismissal, we first went to a BBQ place for late lunch, since I hadn’t eaten for almost 24 hours. I had a three hour ride home from Mayo. By the time we got home, I am starting to feel a deep discomfort in the area of the biopsy. They told me that would be about what I’d feel for about 7 days. I’ve read 2-3 days…..and some people had nothing. I am to take Tylenol or use an ice pack if it bothers a lot. Also, I’m to watch for a temp over 100.4 (indicating an infection). However, while there are always possibilities of infection and bleeding, they said that was rarely ever something that happened. Since I am so far away….if there is bleeding or temperature…I am to go to the local hospital.

So, that is it. The words, “Bone Marrow Biopsy” conjures up thoughts of a procedure that must be horribly painful. I freely admit that Is where my head was before today. I’m so glad to report that it doesn’t have to be the case. That said, the hematologist made it very clear to us that having it done by someone who did these biopsies every day and many, many of them was very important for more comfort.

Now, the hardest part starts…and that is…waiting…waiting….waiting for the results. They said 2-3 days. That puts us up very close to the weekend, but I’m hoping I do not have to suffer through the weekend to wait until Monday. They said that my oncologist will give me the results and discuss them. So, I’m expecting them to call us with the results and then make another appt very soon to go back up there to start treatment to try to treat whatever problem is found. At this point, it’s out of my hands. I have to sit back….trust in the Lord, the lab people and the doctors ……..

Julie

Marion, We came home last Friday afternoon…..got the phone call from the PA about the results of the brain scan and blood tests as we were clearing the edge of Rochester. We were to go ahead and go home and they would set up an appt this week with the hematologist. Our appt is tomorrow early afternoon, so we are leaving tomorrow morning for the three hour drive for the consult. At that time, we will find out what the hematologist wants to do, but the point of the consult was to discuss the idea of a bone marrow biopsy with a hematologist and get one scheduled if he says yes. I can’t imagine him saying no. The only thing that might change it would be if they did a blood test for the platelets and hemoglobin again……to see if there was an increase in either or both. That is not scheduled…but perhaps they will still do that once we get back up there. It hasn’t been mentioned. The bone marrow biopsy has not been set up yet because we haven’t had the consult with hematology yet.

New symptom….not sure if it is related to shortness of breath….or the asthma I have …or just what…..but in the past two days, I have started dry heaving again. The asmanex inhaler had stopped that before……and I was just congratulating myself that the problem was gone….and boom….it’s back. Such fun.

I saw my GP this morning after finding a new Mayo Clinical note from the phys. assist. It outlined the full problem they found with the blood smear as far as that could go. After my GP read it….she said that a bone marrow biopsy was definitely what was needed to find out what is going on in the bone marrow. She still mentioned the possibility that I lack a gene that makes sulva (and other drugs) damage platelet counts. It’s a fairly common gene deficiency, but more common in males, specifically black males, …..with the radio of men to women being aobut 2 to 1 from what I saw on line. Hmmm…..I do have some black heritage in my family history (we just discovered this two years ago), so who knows…..except for the guy part….maybe I get lucky and that’s the problem. It can resolve fairly fast….or it can take a long time, dpending on the person.

OR…..it could be leukemia.

Here is what the report says:
“Periferal smear identified B-Cell population. Given findings and history of chronic lympocytosis, flow cytometric immunophenotyping performed. This shows 1% myeloid lineage blasts present and rare dysgranualar neutrophils. Samm lambda light chain restricted B-Cell population detected, represents approximaely 16% of total analyzed events. Significance uncertain. “

The one take away was that there were two words at the end of the report that indicated, “significance unknown” . In other words they just can’t make a diagnosis based on the seen evidence….it isn’t sufficient.

So, more waiting, more chewing nails. I didn’t “want” to do a bone marrow biopsy…who would….but a nurse friend said to push for it (you know who you are) and my GP agreed that is what I would want them to do. And no…it isn’t pleasant….but I will get through it too.