Butter
Tuesday, February 26th, was my last day of my new treatment plan. This was a Kyprolis day along with Dex. February 12th was the beginning of the plan with Darzalex, Kyprolis and Dex. February 19th was Kyprolis and Dex. These 3 weeks conclude this 1st cycle of this new plan. I have off now until March 12th, which will start off with the Darzalex, Kyprolis and Dex at 8:30 AM. I will still have to take my Dex on March 5th. No relief from that med even on my week off. But Dex is a big part of Myeloma treatments. Didn't really notice much of a change in the side effects. Still was fatigued, still got the rash on my face and chest, still had somewhat of a mild headache, still had to run to the bathroom, still got the hoarseness, still got the fat face, still not able to taste my food, still have neuropathy in feet and fingers, still up till 1 on Dex nights, still have the chemo brain, still get these weird smells at times, still, still, still. I know this is just my first 3 weeks of my new treatment plan so giving all these side effects time to get use to that plan. Hope some of these side effects will go away or at least minimize. Dr. Sarriera has me scheduled out until October. I see him again April 2nd.
Sandy and Denny are here for 5 weeks. Been nice having them near by. Their condo is 1.2 miles from our home. And very excited that Monday, we will be picking up Louise and Bob at the airport for a 5 day visit. And Sandy and Denny will be picking up Deb and John at the airport for a 7 day visit. This will be the first that I have had my O5 girlfriends, minus Cheri, with me since 2016. Hopefully, we get will a nice day to head to the beach. I know there will be lots of fun no matter what.
Most cats come running when they hear a can being open. Not our Tommy. He comes running, well walking, when he hears me put a muffin down in the toaster. Sits there until it pops because he know that I will be putting butter on my muffin. I have to scrap the knife off on the corner of the plate for his own little pat of butter. Plus, I have to drip a bit of the melted butter on the plate too. He will take about 3 licks and he is done. And some mornings after sitting there waiting, he may not lick any of it. Finicky, yes. Oh, please wish him a happy birthday. He turned 15 on the 15th of February.
Quote:
Encouraging words are good for the human spirit that faces cancer. Stay strong, breathe, smile, fight hard, keep moving, trust in God, believe in yourself, think happy thoughts, you can do it, laugh loud, you are beautiful, you are loved, stay positive!!!
Wednesday, February 27, 2019
Monday, February 11, 2019
Door prize.
Tomorrow, February 12th, we have to get up around 5:30 to get ready and be at the hospital by 7:45 AM. Tomorrow, February 12th, I start my once a week Kyprolis for 3 weeks and then one week off. And my once a month Darzalex (like it was). And of course, Dex every Tuesday (like it was). This is my new treatment plan. I will continue on this plan till "whenever". My Myeloma is the aggressive type so we are not taking any chances of it relapsing. Dr. Sarriera will monitor my progress with Myeloma labs every 7 weeks followed by an appointment with him. He will schedule a Pet Scan in about 4 to 6 months. If any of these tests in the future show any progression of this disease, we will be ready to smack it down again.
I am anxious to see if my side effects change with only getting the Kyprolis once a week. The fatigue would be the thing I would like to see go away. And this weight I have picked up. I hate it. Thought of going back to WW. Dr. Sarriera says that as long as I am on Dex, I am not going to lose a lot of weight. Makes me sad.
Tonight was our support group meeting. I was in charge of the meeting as a new co-leader from start to finish. I received several compliments at the end of meeting that I did a good job. Yeah. Benn, one of our members, was our first speaker. He told of his Myeloma journey. What an interesting story. Then we had a speaker from LLS. Another great speaker. Once the speakers were finished, the Myeloma patients told their journeys. And best of all, Kristi was able to join us for the meeting. She enjoyed hearing all the journeys and how we all differ with our Myeloma. Same disease, different circumstances. Great meeting. My "happy" place for an evening.
Mary, one of the Myeloma patient's wife, did our decorations on the tables tonight. She did a Valentine theme. Very pretty. Unbeknown to me, she put a sticker under one of the chairs at each table. That person with the sticker won the center piece. Mary announced that we were to reach under our chairs on the right side and we should feel a piece of paper. I reached under my chair, felt the paper and pulled it out. Well, what I ripped off was the paper that was on the bottom of the chair. Oops. Was good for a laugh. No door prize for me. Kristi won at our table. Thanks Mary.
Quote:
You may have to fight the cancer battle more than once to win.
Tomorrow, February 12th, we have to get up around 5:30 to get ready and be at the hospital by 7:45 AM. Tomorrow, February 12th, I start my once a week Kyprolis for 3 weeks and then one week off. And my once a month Darzalex (like it was). And of course, Dex every Tuesday (like it was). This is my new treatment plan. I will continue on this plan till "whenever". My Myeloma is the aggressive type so we are not taking any chances of it relapsing. Dr. Sarriera will monitor my progress with Myeloma labs every 7 weeks followed by an appointment with him. He will schedule a Pet Scan in about 4 to 6 months. If any of these tests in the future show any progression of this disease, we will be ready to smack it down again.
I am anxious to see if my side effects change with only getting the Kyprolis once a week. The fatigue would be the thing I would like to see go away. And this weight I have picked up. I hate it. Thought of going back to WW. Dr. Sarriera says that as long as I am on Dex, I am not going to lose a lot of weight. Makes me sad.
Tonight was our support group meeting. I was in charge of the meeting as a new co-leader from start to finish. I received several compliments at the end of meeting that I did a good job. Yeah. Benn, one of our members, was our first speaker. He told of his Myeloma journey. What an interesting story. Then we had a speaker from LLS. Another great speaker. Once the speakers were finished, the Myeloma patients told their journeys. And best of all, Kristi was able to join us for the meeting. She enjoyed hearing all the journeys and how we all differ with our Myeloma. Same disease, different circumstances. Great meeting. My "happy" place for an evening.
Mary, one of the Myeloma patient's wife, did our decorations on the tables tonight. She did a Valentine theme. Very pretty. Unbeknown to me, she put a sticker under one of the chairs at each table. That person with the sticker won the center piece. Mary announced that we were to reach under our chairs on the right side and we should feel a piece of paper. I reached under my chair, felt the paper and pulled it out. Well, what I ripped off was the paper that was on the bottom of the chair. Oops. Was good for a laugh. No door prize for me. Kristi won at our table. Thanks Mary.
Quote:
You may have to fight the cancer battle more than once to win.
Friday, February 1, 2019
100
Today was my appointment with Dr. Sarriera to discuss my results from my Pet Scan. And what wonderful, wonderful news. We had seen the results in my portal and read them as being good but needed Dr. Sarriera's saying - you are right, all is good. First as we waited for Dr. Sarriera, Abby came in to the room with a big smile on her face. She wanted to tell me that all was good from the Pet Scan even though we weren't to see her today. Big hugs. Then a doctor that is shadowing Dr. Sarriera came in and asked questions about my neuropathy, breathing, etc, etc, etc. Hate to say this but he needs more training. :) Finally Dr. Sarriera came in with a big smile on his face. Sat down and said all was good. No active Myeloma showed up on the Pet Scan. I asked to see the scans of the spine. We compared the last scan and the ones taken this week and there was not any Myeloma tissue there. So the Myeloma tissue in my spine has dissipated. Yeah. Any lytic lesions that were visible on the scan were all inactive. Great report. We know there is always Myeloma lurking but right now we are happy to hear that none can be found. And we want to keep it that way. So my maintenance plan goes in to effect the week after next. Yes, I talked him in to having another week off from chemo but not Dex.
So my treatment plan is as follows. I will now have Kyprolis once a week for three weeks and then have a week off. This will be only half of the dosage I was getting. Then Darzalex will be once a month (like now) and the same dosage. Dex will continue to be once a week on Tuesdays. Had talked about stopping it but Dex is a crucial part of the Myeloma treatment. Since my Myeloma is aggressive, we are not taking any chances. This plan will be monitored by weekly labs, Myeloma labs every 7 weeks, appointments with Dr. Sarriera every 8 weeks and Pet Scans every 4 to 6 months. Dr. Sarriera feels Pet Scans work better for me as far as showing any Myeloma. Will be anxious to see how my side effects change with only once a week chemos. More energy, less fatigue????
Bill and I are very happy with our news today. We will keep on saying our prayers to keep the Myeloma at bay. It's been almost 2 1/2 years we have been battling this disease and we are looking for a break. We are hoping this is it. Would like to thank you all for your support, prayers, calls and know you will continue with them. They are greatly appreciated and needed.
Bill keeps a spreadsheet on all my doctor visits and treatment visits. Last year there were 100 visits. We decided this year to cut that in half. And with the news we got today, we are sure we can accomplish that.
Quote:
Never give up, never give in.
Today was my appointment with Dr. Sarriera to discuss my results from my Pet Scan. And what wonderful, wonderful news. We had seen the results in my portal and read them as being good but needed Dr. Sarriera's saying - you are right, all is good. First as we waited for Dr. Sarriera, Abby came in to the room with a big smile on her face. She wanted to tell me that all was good from the Pet Scan even though we weren't to see her today. Big hugs. Then a doctor that is shadowing Dr. Sarriera came in and asked questions about my neuropathy, breathing, etc, etc, etc. Hate to say this but he needs more training. :) Finally Dr. Sarriera came in with a big smile on his face. Sat down and said all was good. No active Myeloma showed up on the Pet Scan. I asked to see the scans of the spine. We compared the last scan and the ones taken this week and there was not any Myeloma tissue there. So the Myeloma tissue in my spine has dissipated. Yeah. Any lytic lesions that were visible on the scan were all inactive. Great report. We know there is always Myeloma lurking but right now we are happy to hear that none can be found. And we want to keep it that way. So my maintenance plan goes in to effect the week after next. Yes, I talked him in to having another week off from chemo but not Dex.
So my treatment plan is as follows. I will now have Kyprolis once a week for three weeks and then have a week off. This will be only half of the dosage I was getting. Then Darzalex will be once a month (like now) and the same dosage. Dex will continue to be once a week on Tuesdays. Had talked about stopping it but Dex is a crucial part of the Myeloma treatment. Since my Myeloma is aggressive, we are not taking any chances. This plan will be monitored by weekly labs, Myeloma labs every 7 weeks, appointments with Dr. Sarriera every 8 weeks and Pet Scans every 4 to 6 months. Dr. Sarriera feels Pet Scans work better for me as far as showing any Myeloma. Will be anxious to see how my side effects change with only once a week chemos. More energy, less fatigue????
Bill and I are very happy with our news today. We will keep on saying our prayers to keep the Myeloma at bay. It's been almost 2 1/2 years we have been battling this disease and we are looking for a break. We are hoping this is it. Would like to thank you all for your support, prayers, calls and know you will continue with them. They are greatly appreciated and needed.
Bill keeps a spreadsheet on all my doctor visits and treatment visits. Last year there were 100 visits. We decided this year to cut that in half. And with the news we got today, we are sure we can accomplish that.
Quote:
Never give up, never give in.
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