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
Monday, August 25, 2014
Thursday, August 21, 2014
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.
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.
Tuesday, August 12, 2014
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
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
Friday, August 8, 2014
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.
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
Tuesday, August 5, 2014
Another Broken Rib; Clinical Trial?
Doug has evidently broken another rib. He didn't tell me right away. He says the pain was manageable until he sneezed this evening. Then it got bad enough for him to take a percoset, and he doesn't like to take pain meds.
There is nothing to be done for a broken rib except to rest. But I did report it to the nurse navigator.
Doug is eligible for a clinical trial. The nurse in charge of the trial paperwork emailed us 12 pages of detail. The drug is Oprozomib and it is a phase 2 trial to test safety and effectiveness at different doses. Doug has not decided if he will participate; we would need to stay in Denver for close monitoring for weeks. We don't know yet if hotel and travel expenses would be paid. And we would need to board the dogs at a kennel. We will discuss this August 20th when Doug has his appointment with the specialist.
There is nothing to be done for a broken rib except to rest. But I did report it to the nurse navigator.
Doug is eligible for a clinical trial. The nurse in charge of the trial paperwork emailed us 12 pages of detail. The drug is Oprozomib and it is a phase 2 trial to test safety and effectiveness at different doses. Doug has not decided if he will participate; we would need to stay in Denver for close monitoring for weeks. We don't know yet if hotel and travel expenses would be paid. And we would need to board the dogs at a kennel. We will discuss this August 20th when Doug has his appointment with the specialist.
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