Myeloma Shells.
Last night, Monday, January 14th was our monthly Myeloma support group meeting. I forgot to count how many were there. I am guessing at least 30. Speaker was great even though she had to leave early. She spoke on healthy eating and cancer fatigue. Both very good articles especially the fatigue. It's is real and she had some pointers on trying to relieve some of the fatigue feelings. Food was excellent again. Vinzo's is the restaurant that prepares it for us. We had chef salad, regular salad, eggplant parmesan, spinach lasagna, spinach and mushroom chicken Alfredo, pasta sauce, penne pasta, cakes and cannolis. Doesn't that make you want to come to one of our meetings? Our next meeting is February 11. Our very own Benn will be our speaker. Can't miss this one. Seriously, if you read this and you know someone that is dealing with Myeloma, we would be glad to have them attend one of our meetings and they will be hooked. If you need more info, IM me. It's a happy place for me I know.
1 down and 3 to go. I had my Kyprolis treatment today, January 15th. Tomorrow I will get another one. Then January 22nd and January 23rd (that date sounds familiar), I get the last two Kyprolis treatments until after the pet scan results. My appointment has been set for January 30th for the pet scan. Will see Dr. Sarriera on February 1st. Then we go from there. No active Myeloma (this is what we want) treatment like doing now but only once a week instead of twice and changes to dosages. Darzalex the same (once a month, same dosage), Kyprolis once a week instead of twice (dosage will be half of what it is now) and no Dex (dosage ZERO). This is what we want. Myeloma labs will be the monitor of this plan. I am assuming these will be every 4 weeks before my appointments with Dr. Sarriera. Will verify all this at my appointment on the 1st. Myeloma found (this we do not want), another treatment plan will be started as the one above isn't working. Whatever happens, I will be on a treatment plan forever as this Myeloma I have is aggressive. So preparing myself for a forever treatment plan. Maybe there will be a cure found for Myeloma and I will be cured before my forever wears out.
Today I have Kerrie in the lab draw station. When she and YoYo were discussing my labs to be drawn, she said we only needed to dram CBC labs. I questioned her why not the CPM? This is the lab that measures my bilirubin. She explained I questioned this once before and she researched it. Only need to draw for bilirubin every 28 days unless the doctor orders it. So something else we need to keep track of. Port accessed, labs drawn and off to Vanessa in room 21. Found Bill already seated and waiting on me. Vanessa asked usual questions and said she would get the lab to mix my Kyprolis. Oh but wait, you have to wait until you get my lab results back for my platelets first. She just left the room. Advocate, advocate. Platelets drop to 86 from 118 last week. Still okay to go.
Mixed the Kyprolis, administered, port access removed, done. See you tomorrow, Wednesday, January 16th.
During our support group meeting, the last thing we do is go around the room and tell of our journeys. We have heard it all before from some of the members but give them our respect so we can share with the new persons (we had 4 last night) and hear theirs. When it was my turn, I told of my July 2016 diagnosed date, November 2016 transplant, 6 month after relapsed date, radiation 2017, relapse, treatment plan I am now receiving. Then I told of my upcoming pet scan and what happens when we get the results. As I was speaking, I said if the pet scan doesn't show any Myeloma shells. What shells? Someone hollered chemo brain. What a good laugh we all had. Shells??? Because we live in Florida? This is why our support group is good for us all. Laughter. But really shells??? I do like that better then cells.
Quote:
We are cancer warriors and at times, we can laugh without the fear of the future.
Tuesday, January 15, 2019
Wednesday, January 9, 2019
Sharon/Aunt Margaret.
This week started out with my Darzalex and Kyprolis yesterday, January 8th. Left home at 7 AM and left the hospital @ 2 PM. Bill and I said that was the best time ever for our long day. Things were running smoothly. Platelets and bilirubin were in the range they needed to be without having to contact Dr. Sarriera for approval. Our oncology nurse, Angie, knows my procedure of times for what drugs when and moved us along. Of course, within her administering my premeds of Tylenol, Benadryl and more steroids, the Benadryl put me out in about 15 minutes. Slept off and on most of the treatment. Angie had to do vitals every hour so that woke me a bit. But went right back to sleep. However, I didn't go to bed until 12:30 AM and have been up since 4:30 this morning. Dang Dex. And right now I am just starting to get tired. I think once I go to sleep, I will sleep for 2 days. Hopefully there will not be a lot mistakes in my blog. :)
Today, January 9th, I had my infusion of Kyprolis. Arrived about 15 minutes before my 1.30 appointment time hoping since I had an appointment with Dr. Sarriera, they may take me early. Nope. They were very busy and I didn't get called back to the draw stations until about 1:45. I only have to have them access my port with the needles for the chemo to go through. No labs to be drawn. Once that was done, I went to room 17 and Julia. She met me in the hallway and said - told them to go on and mix your Kyprolis. She kept checking to see if ready but they were so busy it took a bit. She knew I had a doctor's appointment. Meanwhile, we had a visitor. Desiree. Our Desiree. She looks great. Still the same caring person. Was so glad to see her. She likes her new position. This week she is back helping Dr. Sarriera train for her old position. Person she trained before was not a good fit. I think I could have told you all that. But no one is going to fill Desiree's shoes as far as I am concerned, so don't try. :) Desiree did introduced the person she is training to us, Ana. She was very nice. Seemed to be interested in what I have to say. Had to laugh because Desiree handed me her business cards. Two of them. I asked if she does everything in twos now since she had the twins. Anyway, finally finished with my infusion in plenty of time to get to the 2nd floor for my doctor's appointment.
Appointment was scheduled for 3:15. I was in the bathroom when Abbey came out in the waiting room to get me. So she finished off with another patient. Didn't get called back then until close to 3:45 then. Talked with Abbey first. Then she and Dr. Sarriera came in the room. All labs looked good. Going to finish out my treatments next week and the following week. January 23rd will be the last Kyprolis appointment for now. Then a pet scan to be done followed by an appointment with Dr. Sarriera to discuss the results. He wants the pet scan to be scheduled the week of January 28th with his appointment to be within a day or two following the scan. Knows the pet scan results hits my portal almost within the same day it's done, depending on time and that we see the results and don't alway understand some of the comments. Having to wait to discuss with Dr. Sarriera is no fun. I have an appointment set up for February 1st with him but Abbey will change if she has too. And if I have the option of a day close to the 1st for the scan, I will definitely schedule then. He will not do another bone marrow biopsy. Last few ones were good so sees no reason for one.
Here are my options once pet scan results are finalized. If there isn't any myeloma found, I will go on a "forever" maintenance plan of 3 weeks of Kyprolis but only once a week. My Kyprolis will be only half the dosage that is infused now. Along with the once a week plan, I will still have my Darazlex once a month and that will during the first week. There will be no Dex. Bill was so happy about that. I called it the "forever" maintenance plan because my type of Myeloma is aggressive once it starts and we don't want to give it a chance to get started again if nothing shows in the pet scan. Dr. Sarriera said that maybe in 2 years, 5 years, 10 years, he may revisit the plan. If there is Myeloma detected in the pet scan results, my treatment plan will be change because obviously the one I am on isn't working. This will be discussed, if necessary, at my appointment on the 1st of February. We are praying this part will not happen. But if it does, we will again fight. Bill and I both hope and pray the "no" Myeloma detected are the results. We are happy about all the lab results but until the pet scan is done, we can not be up and up because we have been slapped down so many times. And again, if this happens, we will start the fight again! So as of right now, we are anxiously waiting on the pet scan. Dr. Sarriera and Abbey both left with a hand shake and I am sure, said a pray the pet scan comes back clean. Picked up a pharmacy ordered and left the Cancer Center at almost 5. Crawled home. Took us 1 hour and 10 minutes to go 13 miles. Needless to say, Bill was very tensed till we got home. Sorry Michelle to worry you. What a great friend you are!!!
Michelle and Gery had a visitor from New York for several weeks. Michelle's Aunt Sharon usually comes to stay with them in the summer. But she had the opportunity to go to Germany during the time frame. That move her visit out to November/December. Sharon, AKA Aunt Margaret as called by Michelle and Gery's granddaughter Callie, went shopping with mom and me one day. Mom also had to stop at the bank. Sharon opted to wait in the car while we went in to the bank. As a joke, I told her I was locking her in the car. Hit the lock button on my keys and never hit the unlock button. OOPS. Just forgot. Sharon somehow bumped the door unlock button by the door knob and my alarm went off. She said she just sat there for a bit and pretended it wasn't her car that the alarm was going off in. Finally, she figured she better do something as it was getting annoying. So she crawled up between the seats and hit the unlock button for my door. The alarm, finally after a bit, stopped. Sorry Sharon. What a good laugh we had then once mom and I came out of the bank. We never heard it. Funny as it is, no one came to see if Sharon needed help and that was why she set off the alarm. Just saying.
Quote:
Together as a team, we are stronger and tougher than cancer.
This week started out with my Darzalex and Kyprolis yesterday, January 8th. Left home at 7 AM and left the hospital @ 2 PM. Bill and I said that was the best time ever for our long day. Things were running smoothly. Platelets and bilirubin were in the range they needed to be without having to contact Dr. Sarriera for approval. Our oncology nurse, Angie, knows my procedure of times for what drugs when and moved us along. Of course, within her administering my premeds of Tylenol, Benadryl and more steroids, the Benadryl put me out in about 15 minutes. Slept off and on most of the treatment. Angie had to do vitals every hour so that woke me a bit. But went right back to sleep. However, I didn't go to bed until 12:30 AM and have been up since 4:30 this morning. Dang Dex. And right now I am just starting to get tired. I think once I go to sleep, I will sleep for 2 days. Hopefully there will not be a lot mistakes in my blog. :)
Today, January 9th, I had my infusion of Kyprolis. Arrived about 15 minutes before my 1.30 appointment time hoping since I had an appointment with Dr. Sarriera, they may take me early. Nope. They were very busy and I didn't get called back to the draw stations until about 1:45. I only have to have them access my port with the needles for the chemo to go through. No labs to be drawn. Once that was done, I went to room 17 and Julia. She met me in the hallway and said - told them to go on and mix your Kyprolis. She kept checking to see if ready but they were so busy it took a bit. She knew I had a doctor's appointment. Meanwhile, we had a visitor. Desiree. Our Desiree. She looks great. Still the same caring person. Was so glad to see her. She likes her new position. This week she is back helping Dr. Sarriera train for her old position. Person she trained before was not a good fit. I think I could have told you all that. But no one is going to fill Desiree's shoes as far as I am concerned, so don't try. :) Desiree did introduced the person she is training to us, Ana. She was very nice. Seemed to be interested in what I have to say. Had to laugh because Desiree handed me her business cards. Two of them. I asked if she does everything in twos now since she had the twins. Anyway, finally finished with my infusion in plenty of time to get to the 2nd floor for my doctor's appointment.
Appointment was scheduled for 3:15. I was in the bathroom when Abbey came out in the waiting room to get me. So she finished off with another patient. Didn't get called back then until close to 3:45 then. Talked with Abbey first. Then she and Dr. Sarriera came in the room. All labs looked good. Going to finish out my treatments next week and the following week. January 23rd will be the last Kyprolis appointment for now. Then a pet scan to be done followed by an appointment with Dr. Sarriera to discuss the results. He wants the pet scan to be scheduled the week of January 28th with his appointment to be within a day or two following the scan. Knows the pet scan results hits my portal almost within the same day it's done, depending on time and that we see the results and don't alway understand some of the comments. Having to wait to discuss with Dr. Sarriera is no fun. I have an appointment set up for February 1st with him but Abbey will change if she has too. And if I have the option of a day close to the 1st for the scan, I will definitely schedule then. He will not do another bone marrow biopsy. Last few ones were good so sees no reason for one.
Here are my options once pet scan results are finalized. If there isn't any myeloma found, I will go on a "forever" maintenance plan of 3 weeks of Kyprolis but only once a week. My Kyprolis will be only half the dosage that is infused now. Along with the once a week plan, I will still have my Darazlex once a month and that will during the first week. There will be no Dex. Bill was so happy about that. I called it the "forever" maintenance plan because my type of Myeloma is aggressive once it starts and we don't want to give it a chance to get started again if nothing shows in the pet scan. Dr. Sarriera said that maybe in 2 years, 5 years, 10 years, he may revisit the plan. If there is Myeloma detected in the pet scan results, my treatment plan will be change because obviously the one I am on isn't working. This will be discussed, if necessary, at my appointment on the 1st of February. We are praying this part will not happen. But if it does, we will again fight. Bill and I both hope and pray the "no" Myeloma detected are the results. We are happy about all the lab results but until the pet scan is done, we can not be up and up because we have been slapped down so many times. And again, if this happens, we will start the fight again! So as of right now, we are anxiously waiting on the pet scan. Dr. Sarriera and Abbey both left with a hand shake and I am sure, said a pray the pet scan comes back clean. Picked up a pharmacy ordered and left the Cancer Center at almost 5. Crawled home. Took us 1 hour and 10 minutes to go 13 miles. Needless to say, Bill was very tensed till we got home. Sorry Michelle to worry you. What a great friend you are!!!
Michelle and Gery had a visitor from New York for several weeks. Michelle's Aunt Sharon usually comes to stay with them in the summer. But she had the opportunity to go to Germany during the time frame. That move her visit out to November/December. Sharon, AKA Aunt Margaret as called by Michelle and Gery's granddaughter Callie, went shopping with mom and me one day. Mom also had to stop at the bank. Sharon opted to wait in the car while we went in to the bank. As a joke, I told her I was locking her in the car. Hit the lock button on my keys and never hit the unlock button. OOPS. Just forgot. Sharon somehow bumped the door unlock button by the door knob and my alarm went off. She said she just sat there for a bit and pretended it wasn't her car that the alarm was going off in. Finally, she figured she better do something as it was getting annoying. So she crawled up between the seats and hit the unlock button for my door. The alarm, finally after a bit, stopped. Sorry Sharon. What a good laugh we had then once mom and I came out of the bank. We never heard it. Funny as it is, no one came to see if Sharon needed help and that was why she set off the alarm. Just saying.
Quote:
Together as a team, we are stronger and tougher than cancer.
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