The Lymph Node That Wasn't?

Yesterday we went to Denver to the MM specialist office. Our doc M was out on vacation, on a bicycle trip in Spain. He works hard and plays hard. We're glad he takes good vacations; it keeps him fresh and enthusiastic in his work. We saw Megan, his nurse practioner, who has worked with our doc for ten years and is excellent.

In addition to getting his chemo and Zometa, we got a lot of questions answered.

August 25 of this year, Doug had a neck lump removed and sent to pathology. We knew it was full of myeloma but hadn't been explained to us. The specimen was sent to three different labs. When we first noticed the lump in Doug's neck, we thought it was a lymph node. So did the ENT doc who did the excisional (removed the whole thing vs. taking a small sample) biopsy. It was labeled "cervical neck lymph node" when it went to the path lab.
Yesterday Megan said that it probably wasn't a lymph node after all since the pathology showed none of the typical architecture of a lymph node.
 It is easy to understand how the first two docs (not myeloma specialists) who looked at it assumed it was a lymph node by location.
Megan said there is no way to prove it now, but it most likely was a plasmacytoma. Since it was outside of the bones, this would have been an extramedullary plasmacytoma.
I've done a little reading on this, and it seems from 6 to 20% of relapsed patients develop extramedullary plasmacytomas.
Megan said this will not change Doug's treatment. He probably will have another PET/CT scan in six months.

People have asked us how long Doug will have to stay on this treatment regimen. Megan explained that treatment is "to maximum response". Doug will continue on this as long as: 1, the cancer numbers continue to improve, and 2, he can tolerate the treatment. Megan said this is usually six to eight cycles. A cycle is four weeks, so this means six to eight months unless something happens before then. Once the cancer numbers fall back enough, Doug would still need to be on maintenance treatment at a lower dose. Or change to different drugs if the current treatment isn't working.

Doug hasn't been sleeping very well, so he got a new prescription for a different sleeping pill. He will try Trazodone; it was originally an anti-depressant but is used mostly for sleep now.

Doug hasn't been sick to his stomach due to the anti-nausea pills. But he is starting to feel more tired. His left knee has really been hurting the last few days. I think he overdid it on the new exercise bike and aggravated the knee. It is slowly starting to feel better. We really want to avoid surgery on the knee; if surgery of any kind would become necessary, he would have to go off the chemo for several weeks. Megan said the dex inhibits healing.

That's all I know for now. Yesterday was a good day but long and tiring; 9 hours door to door. Our lovely neighbor came over and let the dogs out twice.
 One day at a time and counting our blessings.

"May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ." 2 Thessalonians 3:5 

2nd CyBorD tx

Yesterday was Doug's second CyBorD treatment, in Salida. In one week, his platelets went from 236 to 209. That is still a good number, but it surprised me a bit to see that much change. His other counts barely budged. This time the whole process took only 1.5 hours. He felt pretty good afterward, but due to the dex, his appetite was big - he wanted to eat everything in sight.

We have had company lately. Last week a couple from our RV days stopped in town to see us. They are still full time RVers and have been traveling all summer. It was great to see Margie and Edmund. Last Saturday and Sunday we got to visit with another RV friend. Shari is a single gal who has been full timing for 12 years. She parked her rig in our driveway and we shared memories of the good old days. We are very glad to be settled in Buena Vista but we sure did enjoy those RV days.
My sister will come visit toward the end of the month, from TN.

Yesterday and today we have been making applesauce. We got a whole bunch of apples from a friend's trees. This morning after peeling more apples, Doug got a pretty bad cramp in his hand. The cramp has been bothering him off and on all day. The only thing that helps is a heating pad. We are wondering if the cramp is connected to his chemo, but we don't know.

We have another project too. The recumbent exercise bike we ordered finally came - in about a thousand pieces. We have been putting it together and will finish tomorrow.

Next week we go to Denver for the chemo and a Zometa infusion. We have some questions for the specialist. We found out that the lymph node in Doug's neck is in fact myeloma. I think it is pretty unusual for myeloma to go to lymph nodes; I can't find mention of it. We need to know what is the significance of this.

We can see the fall colors begin on the mountains - bright yellow aspens against the dark green pines. Just beautiful.

Love to all.

"Fulfillment cannot be attained by seeking and grasping, but by surrendering and breathing right now, in the present." Karen M. Wyatt, M.D.

First CyBorD Tx

Today was Doug's first CyBorD treatment, in Salida Heart of the Rockies Med Center.

First his vital signs were taken: blood pressure, temperature, blood oxygen saturation, pulse.
Then a blood draw and wait for lab results. The parameters for treatment to proceed are ANC (absolute neutrophil count, a type of white blood cell) 1.0 or better; platelets 75,000 or better; hemoglobin 8.0 or better. Doug's counts are good since he has been off treatment for a while, but that may change.

After the blood counts were approved, the next step was for Doug to take Zofran, an anti-nausea pill - to prevent him from throwing up all the expensive pills. Then he took 10 dexamethasone pills and had to wait 20 minutes before taking 12 Cytoxan capsules. Then the nurse injected the Velcade into his abdominal fat, about two inches to the side of his navel. This is called a subcutaneous, or SQ, injection. Each medication had to be checked by two nurses to make sure he took the correct drugs, and the time logged in.

Two hours, 23 pills and one shot later, we were free to go home.

Doug felt fairly good afterward. Praise the Lord! He ate a good supper but took another Zofran at 7:00 pm when he felt slightly nauseated.

If he can't sleep tonight, we have a pill for that too!

Love to all.

"Each of us is merely a small instrument; all of us, after accomplishing our mission will disappear."    Mother Teresa