GI Side Effects Worse

On October 13 Doug developed abdominal discomfort. Back in 2010 he had quite severe pancreatitis resulting in an ambulance trip and a hospital stay, so he wanted to make sure this was not the beginning of pancreatitis again. He called our local clinic and was told to go to the ER for the blood test. That proved negative which was a big relief.

On October 20 we went to Colorado Springs for Doug's yearly cardiology appointment. He had an EKG which showed evidence of his prior 'right bundle branch block' but no current problems, so nothing to worry about. He had a blood draw to check cholesterol; that is in the normal range.

Doug has had his CyBorD chemo every week. His GI side effects are getting more troublesome. The day after treatment the diarrhea starts and usually lasts two or even three days. Those days he stays home. Taking enough Immodium to deal with that causes constipation the next day or two; it has become a balancing act to take the right pills at the right time. He has a couple of good days a week when he feels like getting out and doing things. Medically this is minor, but does affect his comfort and our lifestyle.

Last Tuesday we went to Denver for the Zometa infusion, Velcade injection, and visit with the myeloma specialist. Doug's weekly labs have been within normal limits. Doug asked him if the Velcade dosage could be reduced; the specialist does not want to do that; he wants to keep hitting the myeloma pretty heavily until the light chains go down enough to get him back into remission. At that point the Velcade dose would be reduced to a maintenance level. Doug is now into the third cycle of chemo. A blood draw was done for the myeloma panel - results will be a week or so.

The specialist recommended that Doug get acquainted with the new nephrologist, just so he will be familiar with Doug's history if any kidney problems arise again.

That's all the medical news. We haven't gone anywhere other than medical visits but we have been able to see friends.

"Being happy doesn't mean everything is perfect. It means you've decided to see beyond the imperfections." 

Weird Rash; More Side Effects

Last week, the day after the CyBorD treatment, Doug noticed a strange rash at the site of the Velcade injection. Having a rash from the Velcade is not unusual; what was strange was the appearance of the rash. There was a circular spot about three inches in circumference, and several "fingers" coming off the red area below it. Another narrow finger was coming up, toward Doug's chest, about eight inches or so. He didn't notice this until 9:00 in the evening, and he had  no fever, the area was not raised or warm. So we didn't call the hospital, although I did check it during the night. In the morning it was much less red, and continued to fade during the day. I had taken a photo of it, and sent it in to the Denver specialist's office. The nurse emailed that it sure looked weird, and she sent it on to the doc. His opinion was that possibly the Velcade had gotten into the lymph system.
We also showed the photo to the chemo nurses in Salida today - they all agreed that it was "weird". No harm done.

Doug's blood counts were good today; within limits to proceed with the treatment. It went fast today - we were at the infusion center only a little over an hour. The weekly blood draw doesn't tell if the treatment is effective; it is done to see if his body is tolerating the chemo, judging by the blood counts.

Once a month the blood is sent off to a special lab. This test is called the "MM panel" and the results show if the bad myeloma cells (light chains) are going up or down. The lambda light chains have been going up every month for the last ten months. Last month's test showed a slight reduction! This is very encouraging and we hope for a steady decline in those light chains.

Meanwhile Doug has been experiencing more side effects. The chemo is hitting his GI tract now; he has diarrhea and sometimes constipation. The Zofran is still preventing nausea. This is not unusual for this type of chemo. More pills to prevent and cope with side effects! He won't sleep well for a couple of nights after the Dex, even with a sleeping pill. But his attitude is good.

My sister was here for a week's visit. We went to a women's retreat for three days. We had a great time and Doug enjoyed peace and quiet from our girl talk. While Carol was here we all got together with our son and daughter in law for quality family time together.

Love to all.

"God uses everything to call us out of apathy."    Ann Voskamp

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.