Murphy.
I had my Daralex last Tuesday, September 18tth, along with my day 1 Kyprolis after having 12 days off. Was at the Cancer Center from 8 until about 3. A little faster because my labs came back within the range needed. Then day 2 of Kyprolis on the 19th. Had a headache the night of my Daralex. Dex had me up Tuesday night until 1. Was fatigued after my treatments last week. Felt okay by Saturday.
Yesterday, September 25th, had my chemo, Kyprolis and Dex. Was up till about 12. Mild headache. Today, Septemberr 26th, Kyprolis day 2. Then my appointment with Dr. Sarriera.
First in came his intern which we have meet with before. He went through some questions that we had so he could talk to Dr. Sarriera before he came in. Sort of like Abbey does at times. We reviewed my labs. He explained until my M-spike returns to 0.0 and my monoclonal immunoglobulin (the IgG light chain) hits the negative range, Myeloma is still there but very minute. Few more questions and he went to get Dr. Sarriera. Tried to have him talk to Dr. Sarriera to take me off those humongous potassium pills. No go!
Dr. Sarriera was happy with my labs even with the M-spike at 0.1. What we are waiting on is the results of my Pet Scan. Praying the mass beside my spine is gone and nothing else shows up. That will be scheduled before my next appointment with him on the 24th of October. Hospital will call me to make an appointment. Will continue with my every other week of Darzalex through the end of October. Also, the twice weekly Kyprolis treatments. These appointments are already scheduled. Once I have my appointment with Dr. Sarriera on the 24th, he will schedule my November appointments. Providing positive results from my Pet Scan, my schedule with be as follows: Darzalex once a month. Kyprolis will continue to be 2 times a week for 3 weeks and one week off for another 6 months (6 cycles). Then hopefully, we will go to once a week with the Kyprolis for 3 weeks and one week off. Also, mentioned that he may be able to take me off Dex as well. Started having some pains in my legs when rubbing them. Feels like they are bruised in certain spots. Worried me. Dr. Sarriera assured me that it was nothing to do with Myeloma but feels it's neuropathy related. Yeah, neuropathy. Told him we decided to use some essential oils for the neuropathy. He was okay with that decision. Still will take the Lyrica too. Dr. Sarriera told us to stay possible and again was happy where I am.
Bill and I are happy with the appointment today but have been at this point before and been slapped down. So we will pray for good results from the Pet scan. Waiting is the hardest but Dr. Sarriera wants to have as many treatments of Darzalex and Kyprolis as possible before it is scheduled. So wait we must. Pray we must. Hope we must.
Today was a very sad day for our friends Gery and Michelle. They had to put down their 14 year old dog Murphy. He was Gery's constant companion. He was having some problems this morning and Gery took him to the vet not expecting to leave without him. His liver was very enlarged and pushing on other organs. Nothing they could do except medicate him to keep him comfortable. Not a way of life Gery or Michelle wanted for Murphy. Gery made the right decision. Bill and I will miss him too. Especially Bill. He was Bill's dog that lived across the street. Barked when he saw Bill's head above our wall. Got all excited when he saw Bill coming across the street to visit. So Murphy, we will miss you but know that you have crossed the rainbow bridge and no longer in pain.
Quote:
Let your faith be bigger than your fear.
Wednesday, September 26, 2018
Thursday, September 6, 2018
Joanie.
This week is so mixed up for me with the holiday. My schedule of Tuesday and Wednesday treatments was thrown off to Wednesday and Thursday treatments. So this is how it went this week. Tuesday I made an appointment for Mom to get her nails done. Told her I would pick her up, we would have lunch, she would have her nails done and then we would go to Walmart for a few things she needed. Well, not!! I got "the pain" in my side that I have had for years. No MRI, CT scan has ever been found any problems. This pain was probably the worse I have had. Usually if I lay down, it will subside. This one took a while longer to quit. Had to cancel all of the above with Mom. I made an appointment with a gastrologist. Stayed home instead and actually spent most of the day in my sewing room. My room that keeps me sane some days. Even if I just sit there and look at my fabric stash, look at quilt patterns I want to make, look at the projects I have started and need to finish, just look around or just sit and stare. Weird huh? But my weird!!!
So yesterday, Wednesday the 5th, was my Darzalex day. Had to be there by 8. Took me back to the draw lab, accessed my port, good blood draw, drew my blood and sent to room 16 with Kelly. Well, I remember her from another time and knew she didn't have any bed side manner. Straight faced always. No happy there. Labs back around 9:30. Bilirubin 1.2 (great). Platelets 108 (great increasing). No need to contact Dr. Sarriera to begin. Premeds of Tylenol and Benadryl pills along with a Dex drip given. Darzalex and Kyprolis meds mixed and ready about 10:00. Dex finished and Kyprolis started. A little wait to start Darzalex. Down hill from there. Kelly started the Darzalex at 100 mg. I did ask and she said it was in the protocol. Should have questioned more. It was a 1/2 hour drip. She came in after that half hour and did my vitals. Blood pressure was up. Started to set my next drip at 150. Bill questioned as to why. It was alway started at 25 or 50 during my previous Darzalex treatments. Kelly move it back to 50. Blood pressure down. Then half hour later moved it back up to 100. Then she went to lunch. Stephanie took over for her. Bill told her that we were not understanding why Kelly was doing the treatment as she was. She checked and showed that Kelly was following the drug protocol and not MY protocol. Stephanie review MY protocol and made a note saying "review patient's protocol when administrating Darzalex. Kelly came back and asked what was going on and Stephanie explained it to her. No emotions from her. Finally got through the treatment with the adjustments Stephanie made. I did say to Kelly that I sorry there was such a mix up and I didn't want to upset her. Again, not even a I am sorry too. No emotions. Funny how we have never had any problems with the order of things for several months and with a lot of different oncology nurses. Good thing Bill is on top of it all with me fighting in the background at times. Advocates together.
Today, Thursday the 6th, I had my second infusion of Kyprolis. In and out in no time. Emma was our oncology nurse today. Emma first asked Bill how his leg was. She seems to love Bill's sense of humor. We love Emma.
No treatments now for a week and a half. Actually nothing but still need to take my Dex on Tuesday. Start back on treatments September 18th. I love these breaks even though I may have some coming down off the drugs minor side effects. I deal with these because this is our time of no drugs but Dex. Twelve days of freedom. Of course, these are weeks we have to make appointments for other stuff and even take a few days of nothing but relaxing and being lazy.
Known as Joan to most but to me she will always be Joanie. Joanie and Harry are our friends from the Army. Our friends from Germany and long time ago. We still keep in contact even if it's a month or so in between. I know I have blogged about them before but doing it again. Tonight Joanie and I had a nice long, needed talk. Joanie is a breast cancer survivor and is now a care giver to Harry. He has an immune disorder. Please keep them in your prayers. Harry has had a rough month with a problem with his leg cause by an accident with a ladder. Has been in the hospital, had a MRI, leg bruised from ankle to his pelvis, hematoma, leg split apart and bled profusely. Is now losing weight and has no energy. On their way to John Hopkins tomorrow to see his doctor there. Pray she can help. Joanie, I hope I got all this right.
Quote:
What lies before us and what lies behind us are small matters compared to what lies within us.
This week is so mixed up for me with the holiday. My schedule of Tuesday and Wednesday treatments was thrown off to Wednesday and Thursday treatments. So this is how it went this week. Tuesday I made an appointment for Mom to get her nails done. Told her I would pick her up, we would have lunch, she would have her nails done and then we would go to Walmart for a few things she needed. Well, not!! I got "the pain" in my side that I have had for years. No MRI, CT scan has ever been found any problems. This pain was probably the worse I have had. Usually if I lay down, it will subside. This one took a while longer to quit. Had to cancel all of the above with Mom. I made an appointment with a gastrologist. Stayed home instead and actually spent most of the day in my sewing room. My room that keeps me sane some days. Even if I just sit there and look at my fabric stash, look at quilt patterns I want to make, look at the projects I have started and need to finish, just look around or just sit and stare. Weird huh? But my weird!!!
So yesterday, Wednesday the 5th, was my Darzalex day. Had to be there by 8. Took me back to the draw lab, accessed my port, good blood draw, drew my blood and sent to room 16 with Kelly. Well, I remember her from another time and knew she didn't have any bed side manner. Straight faced always. No happy there. Labs back around 9:30. Bilirubin 1.2 (great). Platelets 108 (great increasing). No need to contact Dr. Sarriera to begin. Premeds of Tylenol and Benadryl pills along with a Dex drip given. Darzalex and Kyprolis meds mixed and ready about 10:00. Dex finished and Kyprolis started. A little wait to start Darzalex. Down hill from there. Kelly started the Darzalex at 100 mg. I did ask and she said it was in the protocol. Should have questioned more. It was a 1/2 hour drip. She came in after that half hour and did my vitals. Blood pressure was up. Started to set my next drip at 150. Bill questioned as to why. It was alway started at 25 or 50 during my previous Darzalex treatments. Kelly move it back to 50. Blood pressure down. Then half hour later moved it back up to 100. Then she went to lunch. Stephanie took over for her. Bill told her that we were not understanding why Kelly was doing the treatment as she was. She checked and showed that Kelly was following the drug protocol and not MY protocol. Stephanie review MY protocol and made a note saying "review patient's protocol when administrating Darzalex. Kelly came back and asked what was going on and Stephanie explained it to her. No emotions from her. Finally got through the treatment with the adjustments Stephanie made. I did say to Kelly that I sorry there was such a mix up and I didn't want to upset her. Again, not even a I am sorry too. No emotions. Funny how we have never had any problems with the order of things for several months and with a lot of different oncology nurses. Good thing Bill is on top of it all with me fighting in the background at times. Advocates together.
Today, Thursday the 6th, I had my second infusion of Kyprolis. In and out in no time. Emma was our oncology nurse today. Emma first asked Bill how his leg was. She seems to love Bill's sense of humor. We love Emma.
No treatments now for a week and a half. Actually nothing but still need to take my Dex on Tuesday. Start back on treatments September 18th. I love these breaks even though I may have some coming down off the drugs minor side effects. I deal with these because this is our time of no drugs but Dex. Twelve days of freedom. Of course, these are weeks we have to make appointments for other stuff and even take a few days of nothing but relaxing and being lazy.
Known as Joan to most but to me she will always be Joanie. Joanie and Harry are our friends from the Army. Our friends from Germany and long time ago. We still keep in contact even if it's a month or so in between. I know I have blogged about them before but doing it again. Tonight Joanie and I had a nice long, needed talk. Joanie is a breast cancer survivor and is now a care giver to Harry. He has an immune disorder. Please keep them in your prayers. Harry has had a rough month with a problem with his leg cause by an accident with a ladder. Has been in the hospital, had a MRI, leg bruised from ankle to his pelvis, hematoma, leg split apart and bled profusely. Is now losing weight and has no energy. On their way to John Hopkins tomorrow to see his doctor there. Pray she can help. Joanie, I hope I got all this right.
Quote:
What lies before us and what lies behind us are small matters compared to what lies within us.
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