Insects.
My platelets came back as 94. Yeah. On to the new treatment plan to start on Tuesday, May 21st. This plan as I mentioned before, will be reduction of all chemo. Panobinostat reduced to 15 mg, Kyprolis reduced dosage (not sure what that is), Dex once a week only. Started on the 21st. Panobinostat, Kyprolis and Dex. May 22nd, Kyprolis. May 23th, Panobinostat. May 25th, Panobinostat. Several side effects hit. Headache, sinuses, nausea. Very fatigued.
Appointment with Dr Sarriera May 24th. Abby came in first to talk with us. She listened as I described the side effects I was having. Told her I can manage them if that is all I have. She ordered a nausea med for me to have on hand and take as needed. Dr. Sarriera came in and we went over the same thing we discussed with Abby. Mainly as long as my platelets stay up, we are good to go on this treatment plan. I told him right now I have two options, this treatment plan and radiation. Waiting on option 3 when we go to Mayo.
Anna, Dr. Sarriera's oncology nurse, made up a great calendar for me to get on track with especially the Panobinostat. That is taken 2 weeks every other day each week. Then off for two weeks. Kyprolis - twice a week for three weeks. Then off one week. Corresponds with one of the off weeks from the Panobinostat. Dex every Tuesday.
Desiree, my all time favorite nurse, came to visit and brought a patient that has Multiple Myeloma. She wanted to meet me, Barb, so when she come to our Myeloma support group meeting, she will know someone. Hope to see her June 10th. Desiree, alway looking out for me. Love that girl.
AND OF COURSE went for my chemo today May 28th, platelets dropped to 22. No chemo once again. Nothing until we see what my platelets show on June 4th. Right now, Bill and I are not in our happy places once again. This up and down and up and down with this ugly disease has not been fun. We will remain positive but need time to accept what this ugly disease has brought to us now. Ugly, ugly Myeloma. Ugly, ugly disease. Oh, I had already taken my Dex and the Panobinostat. I should have waited until the labs came back. I usually do. Just slipped my mind. Also, have a bit of edema.
Feet and ankles are swelling. Was given signs to watch for. Bill has been making me a water bath with Epsom salts with lavender. Then rubs them with Juniper. Helps a lot.
Had a great day on Sunday, May 26th. Matt, Sasha and Ellie and Michelle and Gery came to our house and we had a wonderful picnic. Bill grilled chicken and sausages. The rest brought appetizers, Mac salad and beverages. I was able to hang with them all day. Play a bean bag game with the girls and even got in the pool with Ellie. Did I say how wonderful this day was for me? Great conversations with Michelle, Gery, Matt and Bill. Great listening to the laughter that stays in your heart of my granddaughters. Just a great, wonderful day if I didn't say it before. ;)
Sasha and I were playing a game where you throw a bean bag into a hole in a slanted board. The song "School's Out for the Summer" came on the radio. I was singing along with it to the parts I knew. I missed a part and asked Sasha what they said. No more insects was her answer. I couldn't quit laughing. She laughed with me a bit and said "Well Didi, we do have cock roaches in our school". Love me some Sasha.
Quote:
Prayer is the most important conversation of the day. Pray with me for a cure for Multiple Myeloma.
Tuesday, May 28, 2019
Sunday, May 19, 2019
Shoes.
Did my blood drawn on Friday. Platelets came back at 37 verses 15 last Tuesday. Will go in for a blood draw again tomorrow, Monday, May 20th. Once we get those results and the results from Tuesday's labs, Dr. Sarriera will make the decision as to continue chemo or not. New plan.
All chemo will be changed. Farydak, will be 15 mg instead of 20. I will take these every other day on Tuesday, Thursday and Saturday. The Kyprolis will be reduced to half the dosage on Tuesday and Wednesday.. Dex will just be on Tuesdays. I think I got this. Pray that this will work for me.
Even though I haven't had chemo for a few days, my fatigue level is not so good. I just hate how tired I get especially when I want to do something like sew. And there is no beating it. Just part of my Myeloma life.
We met with Dr. Nanda, radiologist. Same one that administered my radiation in 2017. We remembered how at my last treatment of radiation, another lump appeared just out of range of where the radiation was aimed. Dr. Nanda is a wonderful, personable, caring doctor. He spent at least 45 minutes with us. After he examined the lump on my head seeing it wasn't in the same place as the last one he treated, he said that I would be a candidate for radiation again. We discussed this in length. Especially about shaving my head again.
So we have option 1 of the new treatment plan and option 2 of having radiation again. Our option 3 will be our trip to Mayo Clinic for a second opinion (requested by Dr. Sarriera). I have an appointment schedule for June 3rd. We are anxious to go. Anxious to see if there is an option 3.
Bill and I like to watch the old Match game. I know, we are old. LOL. Love to see the hair dos and clothes. We were watching Match Game 76 and they were scrolling through the sponsors and one of them was Kinney Shoes. A name from the past. Bill worked for them for years and years. In fact, that is why we moved to Chambersburg. New mall, new shoe store. Remember Michelle Norris, Louise Curwood???
Quote:
Cancer changes people. It makes us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes and prays more desperately and loves more openly.
Did my blood drawn on Friday. Platelets came back at 37 verses 15 last Tuesday. Will go in for a blood draw again tomorrow, Monday, May 20th. Once we get those results and the results from Tuesday's labs, Dr. Sarriera will make the decision as to continue chemo or not. New plan.
All chemo will be changed. Farydak, will be 15 mg instead of 20. I will take these every other day on Tuesday, Thursday and Saturday. The Kyprolis will be reduced to half the dosage on Tuesday and Wednesday.. Dex will just be on Tuesdays. I think I got this. Pray that this will work for me.
Even though I haven't had chemo for a few days, my fatigue level is not so good. I just hate how tired I get especially when I want to do something like sew. And there is no beating it. Just part of my Myeloma life.
We met with Dr. Nanda, radiologist. Same one that administered my radiation in 2017. We remembered how at my last treatment of radiation, another lump appeared just out of range of where the radiation was aimed. Dr. Nanda is a wonderful, personable, caring doctor. He spent at least 45 minutes with us. After he examined the lump on my head seeing it wasn't in the same place as the last one he treated, he said that I would be a candidate for radiation again. We discussed this in length. Especially about shaving my head again.
So we have option 1 of the new treatment plan and option 2 of having radiation again. Our option 3 will be our trip to Mayo Clinic for a second opinion (requested by Dr. Sarriera). I have an appointment schedule for June 3rd. We are anxious to go. Anxious to see if there is an option 3.
Bill and I like to watch the old Match game. I know, we are old. LOL. Love to see the hair dos and clothes. We were watching Match Game 76 and they were scrolling through the sponsors and one of them was Kinney Shoes. A name from the past. Bill worked for them for years and years. In fact, that is why we moved to Chambersburg. New mall, new shoe store. Remember Michelle Norris, Louise Curwood???
Quote:
Cancer changes people. It makes us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes and prays more desperately and loves more openly.
Tuesday, May 14, 2019
Beating
Just a quick update. Oh, sorry for the mistakes in yesterday’s blog. Was sleeping. ha ha!,
May 14th I had a chemo appointment today. This was a lab day. Got there around 12:20. Appointment was for 12:30. Phew. Didn’t take me back for the draw station until 12:45. Then when I told my nurse they were to be Myeloma labs drawn, she didn’t see them in the system. Took a bit to get this straightened out. Around 12:15 went to my room. Had to wait for labs to be processed . Bilirubin 2.2. Platelets 15. Not good. Had to talk to Dr. Sarriera. All chemo on hold even today’s. Also, no Dex. Will have new CMP blood draw Friday. Dr. Sarriera will probably lower the dose of the Farydak.
That’s all I know right now.
Coming home yesterday, we were stopped at a red light and saw this girl running and yelling at a car. She finally crossed the street with her fist up and started beating on this cars window. Light changed. Car takes off and so do we!!!!!
Quote:
The only way to beat this cancer is to accept the reality, embrace the pains and find the courage to move ahead.
Just a quick update. Oh, sorry for the mistakes in yesterday’s blog. Was sleeping. ha ha!,
May 14th I had a chemo appointment today. This was a lab day. Got there around 12:20. Appointment was for 12:30. Phew. Didn’t take me back for the draw station until 12:45. Then when I told my nurse they were to be Myeloma labs drawn, she didn’t see them in the system. Took a bit to get this straightened out. Around 12:15 went to my room. Had to wait for labs to be processed . Bilirubin 2.2. Platelets 15. Not good. Had to talk to Dr. Sarriera. All chemo on hold even today’s. Also, no Dex. Will have new CMP blood draw Friday. Dr. Sarriera will probably lower the dose of the Farydak.
That’s all I know right now.
Coming home yesterday, we were stopped at a red light and saw this girl running and yelling at a car. She finally crossed the street with her fist up and started beating on this cars window. Light changed. Car takes off and so do we!!!!!
Quote:
The only way to beat this cancer is to accept the reality, embrace the pains and find the courage to move ahead.
Monday, May 13, 2019
Green Line.
Well, Tuesday, May 7th was my first day of the new treatment plan. I took my Dex around 10. My appointment for the Kyprolis and the Farydak was at 12:30. Went to the Caner Center and right to Scripts Pharmacy for my Farydak and a few other meds I needed. Then headed up to 5LP for the labs and the Kyprolis and see if it was okay to take the Farydak. Labs drawn and back to my room to wait results. Bilirubin high so they had to contact Dr. Sarriera. Not to take the Farydak either until he approves all. Finally had the approval to go forward with infusion and chem med. 2:30 was given the Farydak and started the Kyprolis infusion. The Kyprolis drip has been doubled. This now will infusion for 30 minutes. So the Farydak is an oral chemo and that goes home with me. Only take that Tuesday, Thursday and Saturday every other week. Headache and had trouble sleeping. Took two Tylenol before I went to bed. Still had headache when I got up on Wednesday, May 8th. Worked through that with some oils. Had a bout of diarrhea but that subside before we had to leave for my appointment. Kyprolis drip and dex. Pat stopped by to say hi. Hadn't seen her for a while at the hospital. Nice little visit. Got settled in a room, no labs needed. Meds mixed and ready to infuse. My oncology nurse contacted Dr. Sarriera to see what he wants me to take for the diarrhea. He said Imoium.
Thursday, May 9th no appointments. Yeah. Took my Farydak at 2:30. To take this at the same time each day. Nothing really going on. Fatiqued.
Well, then came. Friday May10th. Worse day of my life minus Kristi and Millie stopping by with a Chai Latte. And if I said this before, change that to Friday, May 10th. Around 2:30, diarrhea hit and boy did it hit. Not real sure what time it stopped but I was in misery. And of course, this cause other problems. Bill went to the drug store early Saturday, May 12 and got me some things to help my new problem. And they sure did help. Was to do dimes and dinner with Michelle and Gery butI was to miserable. I took my 3rd Faydak at 2:30 on Saturday, May 11th. Was so upset that I was going to hit with side effects for Sunday, May 12th and miss Mother's Day at Kristi. Worked out okay for me. Imodium worked (maybe too much) just so fatigued.
Today May 13th is Bill's 70 birthday. Wow so hard to believe. Had a few pains in my stomach and fatigued. Was able to fight it off and take Bill to lunch along with Kristi. Was nice. I think he enjoyed it. But couldn't fight off the fatique. Slept from about 1:30 till 3:30. Up a bit and slept off and on all day. So ready for bed now. Going real soon. Don't like feeling this way.
When the lab mixes my chemo meds and hands over th the oncology nurse, she scans it along with my wrist bracelet. Then she hangs it and maneuvers the tubes through the defuser machine and pushes some numbers in a thing that looks like a big remote control. Then she gets another oncology nurse to green line it. Which means that other nurse comes in my room, looks at the bag of hanging med asking me my name and birth date. She takes a marker and crosses through the info and starts the machine. We laugh because most the nurses know me but I still have to tell them my name and birth date.
Quote:
Be thankful for today, because in one moment your whole life could change.
Well, Tuesday, May 7th was my first day of the new treatment plan. I took my Dex around 10. My appointment for the Kyprolis and the Farydak was at 12:30. Went to the Caner Center and right to Scripts Pharmacy for my Farydak and a few other meds I needed. Then headed up to 5LP for the labs and the Kyprolis and see if it was okay to take the Farydak. Labs drawn and back to my room to wait results. Bilirubin high so they had to contact Dr. Sarriera. Not to take the Farydak either until he approves all. Finally had the approval to go forward with infusion and chem med. 2:30 was given the Farydak and started the Kyprolis infusion. The Kyprolis drip has been doubled. This now will infusion for 30 minutes. So the Farydak is an oral chemo and that goes home with me. Only take that Tuesday, Thursday and Saturday every other week. Headache and had trouble sleeping. Took two Tylenol before I went to bed. Still had headache when I got up on Wednesday, May 8th. Worked through that with some oils. Had a bout of diarrhea but that subside before we had to leave for my appointment. Kyprolis drip and dex. Pat stopped by to say hi. Hadn't seen her for a while at the hospital. Nice little visit. Got settled in a room, no labs needed. Meds mixed and ready to infuse. My oncology nurse contacted Dr. Sarriera to see what he wants me to take for the diarrhea. He said Imoium.
Thursday, May 9th no appointments. Yeah. Took my Farydak at 2:30. To take this at the same time each day. Nothing really going on. Fatiqued.
Well, then came. Friday May10th. Worse day of my life minus Kristi and Millie stopping by with a Chai Latte. And if I said this before, change that to Friday, May 10th. Around 2:30, diarrhea hit and boy did it hit. Not real sure what time it stopped but I was in misery. And of course, this cause other problems. Bill went to the drug store early Saturday, May 12 and got me some things to help my new problem. And they sure did help. Was to do dimes and dinner with Michelle and Gery butI was to miserable. I took my 3rd Faydak at 2:30 on Saturday, May 11th. Was so upset that I was going to hit with side effects for Sunday, May 12th and miss Mother's Day at Kristi. Worked out okay for me. Imodium worked (maybe too much) just so fatigued.
Today May 13th is Bill's 70 birthday. Wow so hard to believe. Had a few pains in my stomach and fatigued. Was able to fight it off and take Bill to lunch along with Kristi. Was nice. I think he enjoyed it. But couldn't fight off the fatique. Slept from about 1:30 till 3:30. Up a bit and slept off and on all day. So ready for bed now. Going real soon. Don't like feeling this way.
When the lab mixes my chemo meds and hands over th the oncology nurse, she scans it along with my wrist bracelet. Then she hangs it and maneuvers the tubes through the defuser machine and pushes some numbers in a thing that looks like a big remote control. Then she gets another oncology nurse to green line it. Which means that other nurse comes in my room, looks at the bag of hanging med asking me my name and birth date. She takes a marker and crosses through the info and starts the machine. We laugh because most the nurses know me but I still have to tell them my name and birth date.
Quote:
Be thankful for today, because in one moment your whole life could change.
Sunday, May 5, 2019
Gray.
I will be starting my new treatment plan this week. My new chemo pill was approved by my insurance company. So we are ready to go.
It was nice have off those, soon to be 13 days. However there were days I didn't feel so well. I attribute that to coming off the meds. Bill and I have been using essential oils for several months now. Thank you Mimi (our niece). Mimi has sent us several combination oils to try. She has been there to answer our questions and give us oil recipes for different problems we are having. Some of these oils help me make it through my not feeling so well days. Bill has found several oils etc to help him as well.
So Tuesday, May 7th, I will start my treatment of Kyprolis. Also, I take my first Panobinostat along with Dex. Wednesday, May 8th, I get my second infusion of Kyprolis and Dex. Then on Thursday, May 9th, another Panobinostat. Then Saturday, another Panobinostat. That will finish up my first week. May 14th and 15th will be my Kyprolis and Dex. No Panobinostat this week. May 21st, will be the Kyprolis infusion, Panobinostat and Dex. May 22nd, Kyprolis and Dex. May 23rd - Panobinostat. May 25th - Panobinostat. Then I am off for a week. All this to start over again starting June 4th.
We did get an appointment set for Mayo Clinic in Jacksonville as requested by Dr. Sarriera. It will be June 3rd at 8:15 AM. I will be seeing Dr. Roy. I needed to send all my medical records, CD's of scans, X-ray's, MRI's etc. Along with all that, I needed to send any pathology reports there may have been. I sent an email to Desiree asking her where I should start to get all this info. And, the wonderful person she has been to me, took it upon herself to have all this collected and sent to Mayo. Thank you Desiree. I can only sing high praises of her.
Gery and Michelle came over Saturday night for dinner and dimes (Tripoly). We decided to bet on the Kentucky Derby too. I choose Gray Magician. We watched the race, saw the disqualification and I tried to see what place my horse came in. Well, it wasn't until much later that night, I looked on line and found my answer. 18 horses running. Mine came in last. 18th!!! Well, at least he finished right?
Quote:
Once cancer happens, it changes the way you live the rest of your life.
I will be starting my new treatment plan this week. My new chemo pill was approved by my insurance company. So we are ready to go.
It was nice have off those, soon to be 13 days. However there were days I didn't feel so well. I attribute that to coming off the meds. Bill and I have been using essential oils for several months now. Thank you Mimi (our niece). Mimi has sent us several combination oils to try. She has been there to answer our questions and give us oil recipes for different problems we are having. Some of these oils help me make it through my not feeling so well days. Bill has found several oils etc to help him as well.
So Tuesday, May 7th, I will start my treatment of Kyprolis. Also, I take my first Panobinostat along with Dex. Wednesday, May 8th, I get my second infusion of Kyprolis and Dex. Then on Thursday, May 9th, another Panobinostat. Then Saturday, another Panobinostat. That will finish up my first week. May 14th and 15th will be my Kyprolis and Dex. No Panobinostat this week. May 21st, will be the Kyprolis infusion, Panobinostat and Dex. May 22nd, Kyprolis and Dex. May 23rd - Panobinostat. May 25th - Panobinostat. Then I am off for a week. All this to start over again starting June 4th.
We did get an appointment set for Mayo Clinic in Jacksonville as requested by Dr. Sarriera. It will be June 3rd at 8:15 AM. I will be seeing Dr. Roy. I needed to send all my medical records, CD's of scans, X-ray's, MRI's etc. Along with all that, I needed to send any pathology reports there may have been. I sent an email to Desiree asking her where I should start to get all this info. And, the wonderful person she has been to me, took it upon herself to have all this collected and sent to Mayo. Thank you Desiree. I can only sing high praises of her.
Gery and Michelle came over Saturday night for dinner and dimes (Tripoly). We decided to bet on the Kentucky Derby too. I choose Gray Magician. We watched the race, saw the disqualification and I tried to see what place my horse came in. Well, it wasn't until much later that night, I looked on line and found my answer. 18 horses running. Mine came in last. 18th!!! Well, at least he finished right?
Quote:
Once cancer happens, it changes the way you live the rest of your life.
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