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
Tuesday, August 12, 2014
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.
Saturday, July 26, 2014
Bone Lesions and Neck Node
We finally got the formal written results of Doug's PET scan that was done on July 1. There was a delay in getting the previous PET scan for comparison. There are new bone lesions in the left mastoid, right sternoclavicular joint, right anterior 2nd rib, right 7th rib, distal right and left humeri.
Plus a 1.8 x 1.3 cm cervical lymph node on the left side of his neck. We knew it was there.
We knew from the rising blood markers there was something going on, but we didn't know the extent of the new bone lesions. We feel very fortunate that Doug is not having any pain.
Now that there is proof of a CRAB symptom the specialist will finally put Doug on a new drug combo. We don't see the Denver specialist until Aug 20. Meanwhile Doug is busy getting chores done while he still feels good.
This part of the myeloma journey is still a relatively smooth road, although we can see storm clouds ahead.
We went on a beautiful mountain drive a few days ago with friends. Saw lots of very pretty wildflowers, spotted a marmot sunning himself on a rock but weren't able to get a good photo. We stopped for lunch at the Mango cafe in the tiny town of Red Cliff. Very good quesadillas and hamburgers. We went over Shrine pass. The road was a bit rough but the views made it worth the drive. Great day.
My ankle is doing well. I have an excellent physical therapist who is really putting me through the hoops. I think my PT will be finished soon.
Love to all.
Plus a 1.8 x 1.3 cm cervical lymph node on the left side of his neck. We knew it was there.
We knew from the rising blood markers there was something going on, but we didn't know the extent of the new bone lesions. We feel very fortunate that Doug is not having any pain.
Now that there is proof of a CRAB symptom the specialist will finally put Doug on a new drug combo. We don't see the Denver specialist until Aug 20. Meanwhile Doug is busy getting chores done while he still feels good.
This part of the myeloma journey is still a relatively smooth road, although we can see storm clouds ahead.
We went on a beautiful mountain drive a few days ago with friends. Saw lots of very pretty wildflowers, spotted a marmot sunning himself on a rock but weren't able to get a good photo. We stopped for lunch at the Mango cafe in the tiny town of Red Cliff. Very good quesadillas and hamburgers. We went over Shrine pass. The road was a bit rough but the views made it worth the drive. Great day.
My ankle is doing well. I have an excellent physical therapist who is really putting me through the hoops. I think my PT will be finished soon.
Love to all.
Monday, July 14, 2014
New Bone Lesions - Relapse # 2
We got a phone call today from the myeloma specialist's nurse navigator. The PET scan shows increased activity, which means there are new bone lesions. This is pretty much what we suspected, so its no shock. But it is Doug's second relapse.
Doug is to stay on Revlimid for now, but there will be a drug therapy change the next time we see the specialist. We have been prepared for that. Doug has an appointment for August 20.
Doug's rib pain is much less now. He feels pretty good and has been doing a lot around the house, like cleaning out the garage and pressure washing the deck in preparation for staining it. I think he is trying to get as much done as he can, since he may not feel like it when the new side effects hit. He has also been volunteering on our church's building maintenance committee.
It took two weeks to get the PET scan results; we were not surprised as we know there is usually a communication problem between two different hospital systems. The scan was done at our local clinic. Results were delayed in getting to the specialist. We think we know where the problem lies, but it was worth it to avoid another trip into Denver to get the scan done there. The radiologists in Denver review and compare the new scan to the older one, so we are not dependent on the local radiologist's expertise (or lack of).
There has been a development on the nephrology front. The clinic in Fairplay abruptly closed with no advance warning to the physician, staff or patients. One day they were in business, the next day computers and furniture were being moved out. The physician, who was Doug's nephrologist, did not even get access to her patient records. In our opinion, the clinic owners, who own a chain of clinics, acted in a horribly unprofessional manner. The physician put a notice in the Fairplay newspaper, stating that she would like to continue providing care to her patients but has no way to handle insurance, no building, and cannot open a private practice due to her own health concerns. She did give a phone number to contact the clinic owners to obtain our records. We have done so.
We have a lead on a nephrologist who is to start practicing locally; we hope that works out. If we like him it would be nice to avoid the big city.
Fortunately Doug's kidney disease has been stable so he doesn't need a nephrologist immediately.
My ankle is healing nicely from the torn ligament. Having the cast off is a huge relief! I am going to physical therapy and strengthening the ankle and starting to get flexibility back. I am gradually able to resume my activities.
We are living in the moment, enjoying our friends and family and our two little dogs. We know that whatever is ahead, we are held in God's hands.
Love to all.
I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them. Psalm 91:14-15
Doug is to stay on Revlimid for now, but there will be a drug therapy change the next time we see the specialist. We have been prepared for that. Doug has an appointment for August 20.
Doug's rib pain is much less now. He feels pretty good and has been doing a lot around the house, like cleaning out the garage and pressure washing the deck in preparation for staining it. I think he is trying to get as much done as he can, since he may not feel like it when the new side effects hit. He has also been volunteering on our church's building maintenance committee.
It took two weeks to get the PET scan results; we were not surprised as we know there is usually a communication problem between two different hospital systems. The scan was done at our local clinic. Results were delayed in getting to the specialist. We think we know where the problem lies, but it was worth it to avoid another trip into Denver to get the scan done there. The radiologists in Denver review and compare the new scan to the older one, so we are not dependent on the local radiologist's expertise (or lack of).
There has been a development on the nephrology front. The clinic in Fairplay abruptly closed with no advance warning to the physician, staff or patients. One day they were in business, the next day computers and furniture were being moved out. The physician, who was Doug's nephrologist, did not even get access to her patient records. In our opinion, the clinic owners, who own a chain of clinics, acted in a horribly unprofessional manner. The physician put a notice in the Fairplay newspaper, stating that she would like to continue providing care to her patients but has no way to handle insurance, no building, and cannot open a private practice due to her own health concerns. She did give a phone number to contact the clinic owners to obtain our records. We have done so.
We have a lead on a nephrologist who is to start practicing locally; we hope that works out. If we like him it would be nice to avoid the big city.
Fortunately Doug's kidney disease has been stable so he doesn't need a nephrologist immediately.
My ankle is healing nicely from the torn ligament. Having the cast off is a huge relief! I am going to physical therapy and strengthening the ankle and starting to get flexibility back. I am gradually able to resume my activities.
We are living in the moment, enjoying our friends and family and our two little dogs. We know that whatever is ahead, we are held in God's hands.
Love to all.
I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them. Psalm 91:14-15
Sunday, June 22, 2014
No drug change yet - No CRAB symptoms yet
We saw the Denver myeloma specialist last Thursday. We had thought he would change Doug to a different drug because of the steady rise in light chains. But he said "not yet". He said that despite the light chains rising, Doug has no CRAB symptoms as of now.
C = calcium (high blood calcium)
R = renal failure. Although Doug has kidney disease, his kidneys are still able to do the job of filtering.
A = anemia
B = bone. This would mean new bone lesions, not the existing ones.
The specialist ordered a PET/CT scan to check for any new bone lesions. This is scheduled for July 1.
The specialist (we like and trust his judgement) said the standard is to not change treatment until myeloma symptoms are present.
So although Doug's blood work is not normal, it is not considered all that bad (yet).
Our Myeloma Journey road is fairly smooth right now. We know there are some twists and turns up ahead but we don't know when.
We see the specialist again in two months.
Doug thinks he fractured a rib last Friday (after we got home from the Dr. visit). It hurts a lot when he coughs or laughs but he says it is otherwise tolerable pain. This could be a bone already weakened by an old lesion; we will see.
His leg swelling is a bit worse. We did get some compression stockings but so far he refuses to wear them. Sigh.
It is good to hear that Doug is semi-normal for now. We know the MM will progress but we are not in a hurry for him to start a drug that probably has more side effects than the Revlimid.
Doug has actually been doing a lot for me lately. I twisted my right ankle May 23rd and tore a ligament. I have a cast from below the knee to my toes. It is a 'walking cast' but makes for slow difficult hobbling around. I got two pretty bad blisters on my good foot, which are slow to heal. Last week I finally got fitted with the proper heel lift for my left shoe; that helps my back. My sweet husband/chauffeur is the best help of all.
Love to all.
"For fast-acting relief try slowing down." Lily Tomlin
C = calcium (high blood calcium)
R = renal failure. Although Doug has kidney disease, his kidneys are still able to do the job of filtering.
A = anemia
B = bone. This would mean new bone lesions, not the existing ones.
The specialist ordered a PET/CT scan to check for any new bone lesions. This is scheduled for July 1.
The specialist (we like and trust his judgement) said the standard is to not change treatment until myeloma symptoms are present.
So although Doug's blood work is not normal, it is not considered all that bad (yet).
Our Myeloma Journey road is fairly smooth right now. We know there are some twists and turns up ahead but we don't know when.
We see the specialist again in two months.
Doug thinks he fractured a rib last Friday (after we got home from the Dr. visit). It hurts a lot when he coughs or laughs but he says it is otherwise tolerable pain. This could be a bone already weakened by an old lesion; we will see.
His leg swelling is a bit worse. We did get some compression stockings but so far he refuses to wear them. Sigh.
It is good to hear that Doug is semi-normal for now. We know the MM will progress but we are not in a hurry for him to start a drug that probably has more side effects than the Revlimid.
Doug has actually been doing a lot for me lately. I twisted my right ankle May 23rd and tore a ligament. I have a cast from below the knee to my toes. It is a 'walking cast' but makes for slow difficult hobbling around. I got two pretty bad blisters on my good foot, which are slow to heal. Last week I finally got fitted with the proper heel lift for my left shoe; that helps my back. My sweet husband/chauffeur is the best help of all.
Love to all.
"For fast-acting relief try slowing down." Lily Tomlin
Wednesday, May 14, 2014
Kidney disease stable
Doug saw Dr F, the nephrologist, today. The lab work shows he is stable - nothing got worse. In fact there has been a slight drop in the protein in urine. His ankle swelling is a bit worse on the left side but not severe. So that is a good report.
We really like Dr. F. Not only is she a well respected kidney doc but she refuses to play the corporate game of scheduling a patient every 15 minutes. She is so well established in the community that she can get away with being a bit of a maverick. For new consults she schedules 90 minutes. That was pretty standard when I started out in the medical world but sadly is rare now. And she is down to earth. Her hobby is taking care of her rescued burros!
Dr. F says the new chemo regime that Dr. M discussed at the last oncology visit will not hurt the kidneys and would probably be a good thing. We'll find our more about that next month.
We have a new addition to the family - two dogs! We had been without dogs for four years, after many years of multiple dogs and dog activities. We now have two Havanese, male and female, from Havanese rescue. Their owner was unable to keep them due to severe illness, so we adopted them. Pippa and Nikko are three years old, happy little dogs, quiet (unless someone comes to the door), playful, and best of all, no house training issues!
I still can't get a photo from my iMac to this blog. Phooey.
We really like Dr. F. Not only is she a well respected kidney doc but she refuses to play the corporate game of scheduling a patient every 15 minutes. She is so well established in the community that she can get away with being a bit of a maverick. For new consults she schedules 90 minutes. That was pretty standard when I started out in the medical world but sadly is rare now. And she is down to earth. Her hobby is taking care of her rescued burros!
Dr. F says the new chemo regime that Dr. M discussed at the last oncology visit will not hurt the kidneys and would probably be a good thing. We'll find our more about that next month.
We have a new addition to the family - two dogs! We had been without dogs for four years, after many years of multiple dogs and dog activities. We now have two Havanese, male and female, from Havanese rescue. Their owner was unable to keep them due to severe illness, so we adopted them. Pippa and Nikko are three years old, happy little dogs, quiet (unless someone comes to the door), playful, and best of all, no house training issues!
I still can't get a photo from my iMac to this blog. Phooey.
“If you don’t like something change it; if you can’t change it, change the way you think about it” — Mary Engelbreit
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