Preparing for Treatment
We saw Dr. Flinn today and, as we expected, he said that he thinks John needs to enter treatment for his CLL. What makes this such a hard decision is the fact that John's blood is actually very stable. He had Rituxan (monoclonal antibody) last summer and his blood has been normal or nearly normal ever since. But his nodes were only reduced for a short time and then started to enlarge again.
We asked Dr. Flinn today if this is a rarity in CLL (such good blood counts with such active progression in the nodes). He said that actually it is not. Some patients with CLL present more as a lymphoma than a leukemia even though they do, in fact, have leukemia. You see, chronic lymphocytic leukemia is a disease of the bone marrow. That's where your lymphocytes are produced and that's where they somehow go bad, become malignant, and proliferate. From the bone marrow, these malignant lymphocytes then infiltrate the blood and lymph nodes. They can accumulate in either.
When they grow in the blood, the patient will develop issues with their blood. The malignant lymphocytes don't die (healthy lymphocytes do their job - fighting infection - and then they are programmed to die, as the bone marrow constantly manufactures new ones). These malignant cells are not only dysfunctional, they don't complete this "dying process" called apoptosis. They proliferate and accumulate, eventually crowding out the healthy blood cells. So, lymphocytes increase and ultimately healthy red blood cells decrease. You wind up with all sorts of problems like dangerously low platelets or anemia, etc. And your body gradually loses its ability to fight off infection. When the malignant lymphocytes accumulate in the lymph nodes, the patient experiences swelling all throughout their bodies. John has enlarged nodes in his neck, armpits, groin and abdomen.
A patient can choose to tolerate the swelling if he wishes to avoid the toxicity of chemotherapy. But the nodes become very uncomfortable and it does mean the disease is progressing. Fatigue increases along with that. And if the nodes become very large in the abdomen, they can affect organs or pinch an artery. You don't want that to happen, obviously. So, while you don't want to treat with chemo prematurely and suffer unwanted side effects unnecessarily, you also don't want to wait too long and allow the disease to progress so much that you won't get a deep remission when you finally do decide you don't have a choice.
Adding to the weightiness of the decision is the fact that all patients respond differently to chemo. Some tolerate it well while others do not. And there is no standard response. Some will get long remissions and others will not. But when the CLL comes back (and it always does), it will be more resistant to treatment. Stem cell transplants are being done more and more, with higher success rates. But I think there is still a 40% chance of the transplant killing you. So you don't go straight to that option if you might get years of remission from FCR (standard chemo for CLL). Usually, that option will be put on the table when you come out of remission the first time.
John was diagnosed a little over two years ago and I really hoped he would stay in watch and wait status for a lot longer than two years. But I'm thankful for the two years. I wish we didn't have to use chemo this soon. But I'm thankful his leukemia is treatable. It's a mixed bag of emotion. I wish he didn't have to have any disease in his body, but I know it could be worse.
I have been feeling emotional, anxious and fragile this week. I've been weepy and a little depressed. I dreaded this decision - so afraid of not making the RIGHT decision that is in John's best interest for quality of life and long term survival. Certain fears have crept back into my thoughts. I've looked in the mirror every day and seen the stress in my eyes. I have felt and looked old this week. But today I really felt the prayers everyone has been praying for us. I didn't feel emotional when I got up this morning. And I noticed as I was getting ready for our appointment that I didn't have that stressed out 'I'm going to start crying any moment' look either. I got through the day without any tears or anxiety. This is the next step in our journey. Sometimes we just have to accept what we cannot change.
The only decision we have to make now is whether or not John will participate in a clinical trial. But whether or not he enrolls in the clinical trial, he will begin chemotherapy on September 8th or 15th. My immediate concern for him right now is the bone marrow biopsy he will have to have next Wednesday. I've read about them and I know they're painful. He is going to have some pain meds, but he chose not to be put to sleep. (That's what I would have chosen, but he's a lot tougher than I am.)
He will be doing the BMB, scans and labwork the next couple of weeks as part of the screening process that is standard prior to this kind of treatment. And then we will proceed to treatment. If he enters the trial, he will either get the standard FCR or FCR plus an experimental drug that Dr. Flinn believes to be promising. Depending on whether he is getting a combination of three drugs or four, he will be getting infusions three or four days a week every fourth week for possibly six months. The clinical trial is six rounds of treatment. However, I have read of many patients (not in clinical trials) that stop chemo after the fourth round of treatment because they've achieved remission and don't want further toxicity to their healthy cells. Of course, John could do the trial and drop out if he didn't want to do the full six rounds. But if you commit to it, they really want you to stay in it to the end. I have mixed feelings about this part of it because I don't want him to do more chemo than he absolutely has to.
There are so many things to think about, it can make your head spin. And, believe me, it not only can, it does. But I got through this day a lot better emotionally than I expected to. John, of course, is such a rock of stability. He doesn't react to much of anything. He just takes it all in stride. "It is what it is" he always tells me. He is not looking forward to it. But he hopes he will be one of those patients who responds well and tolerates the toxicity well, achieving a long and deep remission. He feels like he's reached the point where he has to do something.
I'm glad I am able to be with him for every doctor visit and sit beside him for every infusion. The only thing I hope they won't allow me in the room for is the BMB. I'm not sure I can handle seeing that; especially if he feels it in spite of the pain meds. I wonder if it's worse than a kidney stone. He said that was the worst pain he's ever experienced. I hope it's not as bad as that.
I so appreciate all of your prayers for John and me today. I wanted you to know that I felt your prayers all day long. Thank you.
We asked Dr. Flinn today if this is a rarity in CLL (such good blood counts with such active progression in the nodes). He said that actually it is not. Some patients with CLL present more as a lymphoma than a leukemia even though they do, in fact, have leukemia. You see, chronic lymphocytic leukemia is a disease of the bone marrow. That's where your lymphocytes are produced and that's where they somehow go bad, become malignant, and proliferate. From the bone marrow, these malignant lymphocytes then infiltrate the blood and lymph nodes. They can accumulate in either.
When they grow in the blood, the patient will develop issues with their blood. The malignant lymphocytes don't die (healthy lymphocytes do their job - fighting infection - and then they are programmed to die, as the bone marrow constantly manufactures new ones). These malignant cells are not only dysfunctional, they don't complete this "dying process" called apoptosis. They proliferate and accumulate, eventually crowding out the healthy blood cells. So, lymphocytes increase and ultimately healthy red blood cells decrease. You wind up with all sorts of problems like dangerously low platelets or anemia, etc. And your body gradually loses its ability to fight off infection. When the malignant lymphocytes accumulate in the lymph nodes, the patient experiences swelling all throughout their bodies. John has enlarged nodes in his neck, armpits, groin and abdomen.
A patient can choose to tolerate the swelling if he wishes to avoid the toxicity of chemotherapy. But the nodes become very uncomfortable and it does mean the disease is progressing. Fatigue increases along with that. And if the nodes become very large in the abdomen, they can affect organs or pinch an artery. You don't want that to happen, obviously. So, while you don't want to treat with chemo prematurely and suffer unwanted side effects unnecessarily, you also don't want to wait too long and allow the disease to progress so much that you won't get a deep remission when you finally do decide you don't have a choice.
Adding to the weightiness of the decision is the fact that all patients respond differently to chemo. Some tolerate it well while others do not. And there is no standard response. Some will get long remissions and others will not. But when the CLL comes back (and it always does), it will be more resistant to treatment. Stem cell transplants are being done more and more, with higher success rates. But I think there is still a 40% chance of the transplant killing you. So you don't go straight to that option if you might get years of remission from FCR (standard chemo for CLL). Usually, that option will be put on the table when you come out of remission the first time.
John was diagnosed a little over two years ago and I really hoped he would stay in watch and wait status for a lot longer than two years. But I'm thankful for the two years. I wish we didn't have to use chemo this soon. But I'm thankful his leukemia is treatable. It's a mixed bag of emotion. I wish he didn't have to have any disease in his body, but I know it could be worse.
I have been feeling emotional, anxious and fragile this week. I've been weepy and a little depressed. I dreaded this decision - so afraid of not making the RIGHT decision that is in John's best interest for quality of life and long term survival. Certain fears have crept back into my thoughts. I've looked in the mirror every day and seen the stress in my eyes. I have felt and looked old this week. But today I really felt the prayers everyone has been praying for us. I didn't feel emotional when I got up this morning. And I noticed as I was getting ready for our appointment that I didn't have that stressed out 'I'm going to start crying any moment' look either. I got through the day without any tears or anxiety. This is the next step in our journey. Sometimes we just have to accept what we cannot change.
The only decision we have to make now is whether or not John will participate in a clinical trial. But whether or not he enrolls in the clinical trial, he will begin chemotherapy on September 8th or 15th. My immediate concern for him right now is the bone marrow biopsy he will have to have next Wednesday. I've read about them and I know they're painful. He is going to have some pain meds, but he chose not to be put to sleep. (That's what I would have chosen, but he's a lot tougher than I am.)
He will be doing the BMB, scans and labwork the next couple of weeks as part of the screening process that is standard prior to this kind of treatment. And then we will proceed to treatment. If he enters the trial, he will either get the standard FCR or FCR plus an experimental drug that Dr. Flinn believes to be promising. Depending on whether he is getting a combination of three drugs or four, he will be getting infusions three or four days a week every fourth week for possibly six months. The clinical trial is six rounds of treatment. However, I have read of many patients (not in clinical trials) that stop chemo after the fourth round of treatment because they've achieved remission and don't want further toxicity to their healthy cells. Of course, John could do the trial and drop out if he didn't want to do the full six rounds. But if you commit to it, they really want you to stay in it to the end. I have mixed feelings about this part of it because I don't want him to do more chemo than he absolutely has to.
There are so many things to think about, it can make your head spin. And, believe me, it not only can, it does. But I got through this day a lot better emotionally than I expected to. John, of course, is such a rock of stability. He doesn't react to much of anything. He just takes it all in stride. "It is what it is" he always tells me. He is not looking forward to it. But he hopes he will be one of those patients who responds well and tolerates the toxicity well, achieving a long and deep remission. He feels like he's reached the point where he has to do something.
I'm glad I am able to be with him for every doctor visit and sit beside him for every infusion. The only thing I hope they won't allow me in the room for is the BMB. I'm not sure I can handle seeing that; especially if he feels it in spite of the pain meds. I wonder if it's worse than a kidney stone. He said that was the worst pain he's ever experienced. I hope it's not as bad as that.
I so appreciate all of your prayers for John and me today. I wanted you to know that I felt your prayers all day long. Thank you.
Comments
I have prayed for John, I am praying and will continue to until he his CLL is in complete remission (preferably dissappeared). I will cancel any commitment I have to sit with you while he is having the 3 to 4 day infusions in the planned weeks. I would consider it an honor. Many are praying for him, he is always so kind to me, I hate it that he is feeling tired and having to make these decisions. If you are not going to be in his session room, I would be honored to sit with you. Hang in there, I know you are and will. I am with you in my heart, and can be there anytime you need me if it would help you to reserve your strength for John if you leaned on me while he is being treated at anytime..
Love you,
janelle
Thank you so much, my friend, for all your prayers. And thank you for that offer to keep me company.
We have some experience with this. We spent one day a week for eight weeks last June/July when John got Rituxan as a single agent. It took the majority of the day and the first dose had to be split up over three days (because he had a bad reaction the first day and passed out cold twice - once in the elevator - after we left the doctor's office) So you better believe I won't be leaving his side except to visit the ladies room.
I got to sit right next to him the whole time he was being infused. And I plan to do the same this time. I make sure he drinks plenty of water and just keep him company. If all the treatment chairs aren't needed, I even get to sit in a comfy recliner. If they fill up, I sit in a regular chair. But I never leave.
If I had to sit in a waiting room by myself, I would definitely have all my friends take turns keeping me company.
If and when the time comes that I need to lean, I won't hesitate to tell you. I do not have a problem asking for support when I need it. And I KNOW you mean every word of what you wrote. When I need you, I know you'll be there for me.
I love you, Janelle.