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