Doug had a blood draw today and then an appointment with the local oncologist. His ANC is 1.4; low but still within the tolerance set by the Denver specialist. Doug is feeling good and has even gained weight.
The phlebotomist has been having trouble finding a vein to draw from lately. If Doug was having frequent infusions, it might make sense to have a port implanted. But the maintenance Revlimid is a pill, and the Zometa infusion is at three month intervals. Currently the blood draws will be done every two weeks.
So since a port would have a possible side effect of a clot forming, it doesn't seem like a good idea right now. The oncologist recommended that Doug lift free weights! We had not thought of that, but it makes sense - that would increase the blood flow in the arms and might create a demand for more (better?) veins. Anyway, it can't hurt. I have 5 lb. weights he can use for now. Exercise is good.
We had a quiet Thanksgiving but it was enjoyable. We usually go to an extended family get-together for Thanksgiving. Lots of people, lots of great food. This year we decided to stay home and avoid kid germs. Doug and I got outside for a walk in nature. Earlier in the week we had a wonderful pre-holiday turkey dinner with friends.
The flu season is here. We know several people who have come down with flu. We are being careful but still going out. Germ-x is our friend; we carry a small bottle with us always.
God is good.
Love to all.
Wednesday, November 28, 2012
Friday, November 16, 2012
Stopping Revlimid - Not
Doug's white count continues to rise marginally, then drop. On 11-14 the ANC was 1.5; the local oncologist was not comfortable with this. He said to us: "I think you should stop the Revlimid. Your marrow cannot tolerate it any longer." He did not have any other chemo to offer - he said he didn't know of any that would not be toxic to the marrow.
Keep in mind that Doug is clinically doing great. No pain, eating well, sleeping okay, able to go places and enjoy activities. Stopping treatment and waiting for a relapse just did not sit well with us. So we emailed our consulting Myeloma specialist in Denver who did Doug's transplant. If it weren't for the 2.5 hour drive to Denver over mountain roads we would be seeing him regularly instead of the local oncologist. Why the local oncologist didn't consult with him this time is a puzzle to me.
I have said before how accessible the Denver specialist is. He's nationally recognized, gives talks at Myeloma conferences, is a brilliant busy guy who is enthusiastic about his work. Given all that, it always amazes us how he responds quickly when we call or email him. He said "Take 5 mg. Rev every other day so long as the ANC is above 1.0." He is less conservative than the local oncologist who felt the ANC had to be above 2. That is conventional wisdom but this is not the time to be so conservative.
We feel much better to keep on the maintenance treatment. For now we can breathe a little easier. Stopping the Rev would seem like giving up.
We are going to be really careful to stay away from anyone who might have the flu or even a cold, as the neutrophils (infection fighting cells) go lower. But right now life is good. Praise God.
Keep in mind that Doug is clinically doing great. No pain, eating well, sleeping okay, able to go places and enjoy activities. Stopping treatment and waiting for a relapse just did not sit well with us. So we emailed our consulting Myeloma specialist in Denver who did Doug's transplant. If it weren't for the 2.5 hour drive to Denver over mountain roads we would be seeing him regularly instead of the local oncologist. Why the local oncologist didn't consult with him this time is a puzzle to me.
I have said before how accessible the Denver specialist is. He's nationally recognized, gives talks at Myeloma conferences, is a brilliant busy guy who is enthusiastic about his work. Given all that, it always amazes us how he responds quickly when we call or email him. He said "Take 5 mg. Rev every other day so long as the ANC is above 1.0." He is less conservative than the local oncologist who felt the ANC had to be above 2. That is conventional wisdom but this is not the time to be so conservative.
We feel much better to keep on the maintenance treatment. For now we can breathe a little easier. Stopping the Rev would seem like giving up.
We are going to be really careful to stay away from anyone who might have the flu or even a cold, as the neutrophils (infection fighting cells) go lower. But right now life is good. Praise God.
Monday, November 12, 2012
Home from Nebraska, resuming Revlimid
After a week off the Revlimid, Doug's ANC came up to 1.9. So he is back on 5 mg. Rev daily, and will have another CBC this week.
We are glad to be home, but we did have a good trip to Neb. Doug's mother is doing as well as can be expected for age 99. Her biggest physical problem is loss of vision. She has some peripheral vision, so she gets around her apartment pretty well. She is not a fall risk; she walks without a cane. When she goes out in the halls or outside she does hold on to whoever is with her. She has two wonderful ladies from Home Instead who come daily to make sure she eats lunch and take her meds, and do any errands. If she is having a bad day they come again in the evening. She really values her independence - she has consistently refused to come to Colorado. Quite a lady.
Doug did well on the trip. He did get a little tired but still wanted to do the bulk of the driving. I am so thankful for no infections with the low white count. We are enjoying life and each other. Praise God.
We are glad to be home, but we did have a good trip to Neb. Doug's mother is doing as well as can be expected for age 99. Her biggest physical problem is loss of vision. She has some peripheral vision, so she gets around her apartment pretty well. She is not a fall risk; she walks without a cane. When she goes out in the halls or outside she does hold on to whoever is with her. She has two wonderful ladies from Home Instead who come daily to make sure she eats lunch and take her meds, and do any errands. If she is having a bad day they come again in the evening. She really values her independence - she has consistently refused to come to Colorado. Quite a lady.
Doug did well on the trip. He did get a little tired but still wanted to do the bulk of the driving. I am so thankful for no infections with the low white count. We are enjoying life and each other. Praise God.
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