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 

Neck Node Removed; Chemo Postponed

Today we went to the office of Dr. P, an ENT physician in Salida. He removed the enlarged cervical node from Doug's neck, about an inch below his ear. It was done with local anesthetic; Doug said he could feel tugging but no pain during. Now that the local has worn off, Doug is taking his pain meds! Dr P said he had to go deeper than he initially thought, so he put in a drain. It is draining quite a bit, which is good. I am okay with doing dressing changes at home. We had some sterile 4 x 4's. Getting the gauze to stick to the side of the neck on a man who has a beard is a challenge. The nurse at the office used lots of tape which was difficult to get off; I did have to cut some hair. Not only did we have sterile gauze, but I found some Co-flex - the stuff that sticks to itself but not skin or hair. So I wrapped that all the way around Doug's neck and it worked great.
Dr P also started Doug on a two week course of antibiotics to prevent infection. We go back this Wednesday to get the drain out.

Dr P talked to Dr M, the local oncologist and together they decided to postpone Doug's first CyBorD treatment a week. So that will be September 2.

The hard part for me is waiting to get the biopsy report back. It will be at least a week. This stretch of our myeloma journey has some potholes!
We have many people praying for us, and that means so much.

Love to all.

"God is our refuge and strength, a very present help in trouble."     Psalm 46:1

Meeting Salida oncologist

Yesterday we met the local (40 minutes away) oncologist. She had Doug's file from our Denver specialist but she asked lots of personal background questions, including Doug's activity level.

 Because of arthritis in his knees, Doug has not been walking much; about two blocks is all he can do before his knees hurt a lot. Dr FM said Doug needs to do some kind of regular exercise to maintain his strength, especially since he will be taking a lot of dexamethasone which can lead to muscle loss. She recommended he lift some light weights (I have already tried to get him to do this) and think about getting a recumbent stationary exercise bike.
The doc also recommended Doug start taking vitamin D-3.

Doug has a neck node below his left ear. We are not sure how long it's been there. We forgot to have the Denver specialist look at it.  Dr. FM wants to know what it is. (Myeloma does not go to the nodes.) So she is referring Doug to an ENT doc for biopsy. We got a phone call from the ENT office asking us to come in this afternoon, so we did. That doc felt the node and has scheduled Doug for an excisional biopsy Monday morning, to be done with local anesthesia.

The CyBorD treatments are set to start on Tuesday at the regional med center near us.

Lots is happening quickly now. We are glad to get action; it is much better than waiting.

CyBorD Decision

Yesterday we had our appointment with Dr. M, the myeloma specialist in Denver. After talking to him Doug decided not to take part in the clinical trial. It is important right now to get going on a chemo regimen. Before joining a clinical trial, there is a period of testing to ascertain the patient's status. Dr. M explained that even if Doug chooses another course right now, he would still be eligible for the clinical trial in the future, if the current drug stops working.

Revlimid was an excellent drug for Doug since 2008 - until it stopped being effective.

Dr M feels that CyBorD is a good choice for Doug. It is a combo of three drugs: Cytoxan, Velcade (generic name bortezomib), and Dexamethasone. This has been proven to be an effective treatment regimen in relapsed patients.

For those of you who don't want to read the technical stuff, skip this part.
Cytoxan is a synthetic antineoplastic (anti-cancer) drug chemically related to nitrogen mustard. Nitrogen mustard was used as a chemical weapon in WWI. Nausea and vomiting are common side effects.
Velcade is the first in a class of drugs called proteasome inhibitors. It can be used alone or as part of a multi-drug regimen. It causes myeloma cells to stop dividing. It comes as a powder which is reconstituted before it is administered by either IV or a subcutaneous injection. A common side effect is peripheral neuropathy (PN). PN is numbness and tingling in hands and feet due to nerve damage. It can range from mild tingling to pain in hands, feet, legs, and/or arms. Fatigue can also be  a side effect, as can nausea, diarrhea, and a raft of other things.
Dexamethasone (dex) is a powerful corticosteroid.  It can help relieve some of the side effects of the other drugs as well as having cancer fighting properties of its own. Common side effects are insomnia and restlessness.

The CyBorD will be given once a week. The Velcade will be given as a shot in the abdomen or thigh. The Cytoxan and Dex are pills taken by mouth. Once a month we will go to Denver; the other three weeks we will go to our regional hospital 30 minutes away from home. Doug has also been prescribed an antiemetic for nausea. And he will resume Zometa, the bone strengthener, once a month. He will also be given Acylovir, an antiviral drug, to prevent shingles.

Before the CyBorD can start, we need to get an appointment with the oncologist at the regional hospital. She will need to meet us and become familiar with Doug's history. Hopefully that will happen soon.

For both me and Doug, there is a feeling of "Here we go again". We don't know exactly how Doug will react but we hope for minimal side effects. Yesterday I was feeling a little low and sad. Then I had a "vision" of me sitting in Jesus' lap, and a comfort came over me. The Lord is our refuge.

Love to all.

Come to me, all you who are weary and heavy laden, and I will give you rest.   Matthew 11:28

Get to see specialist early

We got a phone call today from the Denver myeloma specialist's scheduler. The doc wants to see Doug this Monday instead of August 20. This is good news; the sooner we get him started on an effective drug the better. We are being squeezed into the schedule; there are no openings. So we were offered 7:30 a.m. before the first patient of the day, or 4:30 after the last one. We took the early time. As the day runs on, chances are the doc will get behind schedule. He spends as much time as needed with each patient, to answer all questions. And Denver evening traffic rush is no fun either. So we will leave Buena Vista at 4:30 a.m.

Doug is doing pretty well with his broken rib. But he sneezed tonight and I could tell it really hurt.

Love to all.

I lie awake thinking of You, meditating on You through the night. I think how much you have helped me; I sing for joy in the shadow of your protecting wings. I follow close behind you; your strong right hand holds me securely. Psalm 63:6-8