Dr. Sarriera
'today, June 28th, I had my MRI of my brain. Thank goodness for Ativan. Even the open MRI machine puts me in panic mode. Got through it okay. So noisy. Actually slept through some of it. 45 minutes of banging, tapping, hammering. Had my head in a cage to keep me from moving it. Ativan helped me through that part for sure. Asked for a CD at the end. Now we have to give the CD to the surgeon. That appointment is July 5th. Dr. Garcia. Also a part of the Orlando Health complex. Then from that appointment, we have to decide what is next. Radiation, surgery with possible radiation or continue on the Panobinostat hoping the tumor with shrink.
Took another Panobinostat today,Thursday, June 27th. Have one more to go. So far so good. Side effects are minimal. Keeping them check with some over the counter meds. After tomorrow, I will be off them for 2 weeks. I have to finish my two days of Kyprolis Tuesday and Wednesday. Dex Tuesday.
Very tired still. Hope this all passes with a good nights sleep. Heading there soon. Just a small update till I see the surgeon.
Hope you all have a happy 4th. We will be celebrating with Michelle and Gery, Sandy and Denny, Susie and Gary. So happy for Sandy and Denny to be here. Friends make up our lives especially when they are "old" friends. Their company and our beautiful new friends we could do without, Michelle and Gery, will make me forget for a day about my Multiple Myeloma. Plus add in the mix, Susie and Gary. Good day!!! Anxious for it to get here.
Each time you go to 5LP you have to sign in. This is the lab draw floor and treatment room floor. Same questions all the time. Date, appointment time, arrival time, have a port, seeing the doctor today, your name and your doctor's name. So today, I put Dr. Sarriers's name in place of mine. I scratched it out and put mine. It was YoYo's turn to call someone back. I heard her say Dr. Sarriera's name and thought - oh, he must be in the treatment rooms and they are looking for him, Then I heard laughter at the desk and my name said. They were all laughing as I walked up. Fun peopled. They make you forget a bit. They make you feel part of their group. Wonderful.
Quote:
You got what it takes but this cancer journey takes everything you got.
Friday, June 28, 2019
Thursday, June 20, 2019
Lightning
Wow, the crepe myrtles are in full bloom. Whites, reds, pinks, purples. A lot of the medians of the roads we travel are loaded with them. Michelle and Gery have a white one that waves to us in the wind. Hope they are in bloom when Sandy and Denny come down. Ours that Sandy and Denny got us, bloomed last year but not seeing much yet this year. Beautiful, beautiful!
Had a few side effects from the chemo pill Panobinostat. First, I had edema. My feet, ankles and legs swelled up like mini balloons. Soaked them in Epsom salts and then applied Juniper oil with coconut oil. This lasted a few days. Then had GI problems. Not good. Then my platelets dropped and Dr. Sarriera took me off the Panobinostat. He then dropped the dosage for me to start again. Started the treatment again. Some thing happened and was taken off the Panobinostat again. Platelets dropping is not a good thing.
Back on the Panobinostat treatment plan once again. Had my Kyprolis drip on Tuesday along with my Dex and Kyprolis again on Wednesday. Took my first Panobinostat on Tuesday. Took my second on today, Thursday, June 20th. Then I will take one on Saturday, June 22. Have a few days off and then start again on Tuesday, June 25th. Will have labs drawn on Tuesday to see what my platelets will be. Will go from there.
Today, June 20th, we had our appointment with Dr. Sarriera. He came in without his usual smile and started talking about my visit with Dr. Roy. We discussed the 4 options Dr. Roy had suggested for me to do.
1. Surgery with possible radiation afterwards
2. Radiation only
3. Clinical trials
4. Continue with Panobinostat treatment plan
There are not any clinical trails that I can do because mostly all my labs are good. I wouldn't meet the markers they look for to put in a trial.
I asked Dr. Sarriera which way he would go. He said the Panobinostat would be the way to go again if I can control the side effects. We have not even completed two weeks with it to see any results. I asked him if that would shrink the lump on my head. Again, since we haven't completed a full treatment plan of the Panobinostat, there is no way of knowing. Radiation only was then discussed. He said we know it would probably shrink the tumor only to have another one pop up like the last time. Wasn't even done a full treatment and one popped up. They can only target the area where the tumor is. We had an appointment with Dr. Nanda, radiation oncology, and he examined the tumor and said they could do treatment on this area. And oh, he was amazed at my hair. Was bald the last time I saw him.
And then surgery. He recommend that I see a neurosurgeon to discuss possible surgery to remove the lump. I asked him if the lump was in between my skull and the skin on my head. He wasn't sure but wants me to have a MRI of the brain to be sure what we are dealing with before I see the neurosurgeon. This was the option Dr. Sarriera favored. I told him I just want it to go away. Almost 3 years and the lump reappears in the same place it was when I started??? The decision of the radiation only or surgery will be one Bill and I will decide once all appointments are over. No matter which one we choose, Dr. Sarriera has two chemo drugs he will try once surgery or radiation is complete if I can't tolerate the Panobinostat. Both of these will have me shave my head once again. Something I don't want to think about now.
Dr. Sarriera examined the tumor taking measurements. I forgot to ask him what they were so I could compare to the last time it was measured. I told him there were several sore spots and I can fell it "drawing" and pulling. And at times. it hurts. Told him I afraid it is growing downward in my head area and not on top where I can feel it.
We discussed some of my lab results from my Mayo appointment. The main one was IgE. IgE is a type of antibody for your immune system. This was a measurement that was important during my time at Moffitt. It was blown of the chart so far that they couldn't even measure it at the start. Before I left Moffitt it was down to 450. 214 is normal. Right now it's 45,000. This will now added to the Myeloma lab draws. In rare cases, a high level of IgE means Multiple Myeloma somewhere in the blood. Of course, I would be one with this problem. IgE has an essential role in allergic reactions causing sinusitis, asthma, food allergies;. symptoms that show up in the nose, lungs, throat or on the skin.
I left with tears as this is going to be a anxious time for me till these appointments are scheduled and I get the MRI and see the neurosurgeon. I hope and pray I can continue with the Panobinostat, along with my Kyprolis and Dex, as treatment until then. If it works and starts to shrink the tumor, that would be wonderful. No radiation or surgery.
The O4 FaceTimed me tonight making the O5. Cheri, Deb, Sandy and Louise. Was nice talking with them even if I did get emotional at the end. It can be hard at times. But I love that they do that. They were standing outside at Cheri's house. Cheri asked me if there were lightning bugs in Florida. Nope. Sandy tried to get some in our FaceTime camera. Sasha and Ellie loved to see them when they would come to PA during lightning bug time.
Quote:
When you are fighting cancer, it's not just for yourself; it's also for your family and friends.
Wow, the crepe myrtles are in full bloom. Whites, reds, pinks, purples. A lot of the medians of the roads we travel are loaded with them. Michelle and Gery have a white one that waves to us in the wind. Hope they are in bloom when Sandy and Denny come down. Ours that Sandy and Denny got us, bloomed last year but not seeing much yet this year. Beautiful, beautiful!
Had a few side effects from the chemo pill Panobinostat. First, I had edema. My feet, ankles and legs swelled up like mini balloons. Soaked them in Epsom salts and then applied Juniper oil with coconut oil. This lasted a few days. Then had GI problems. Not good. Then my platelets dropped and Dr. Sarriera took me off the Panobinostat. He then dropped the dosage for me to start again. Started the treatment again. Some thing happened and was taken off the Panobinostat again. Platelets dropping is not a good thing.
Back on the Panobinostat treatment plan once again. Had my Kyprolis drip on Tuesday along with my Dex and Kyprolis again on Wednesday. Took my first Panobinostat on Tuesday. Took my second on today, Thursday, June 20th. Then I will take one on Saturday, June 22. Have a few days off and then start again on Tuesday, June 25th. Will have labs drawn on Tuesday to see what my platelets will be. Will go from there.
Today, June 20th, we had our appointment with Dr. Sarriera. He came in without his usual smile and started talking about my visit with Dr. Roy. We discussed the 4 options Dr. Roy had suggested for me to do.
1. Surgery with possible radiation afterwards
2. Radiation only
3. Clinical trials
4. Continue with Panobinostat treatment plan
There are not any clinical trails that I can do because mostly all my labs are good. I wouldn't meet the markers they look for to put in a trial.
I asked Dr. Sarriera which way he would go. He said the Panobinostat would be the way to go again if I can control the side effects. We have not even completed two weeks with it to see any results. I asked him if that would shrink the lump on my head. Again, since we haven't completed a full treatment plan of the Panobinostat, there is no way of knowing. Radiation only was then discussed. He said we know it would probably shrink the tumor only to have another one pop up like the last time. Wasn't even done a full treatment and one popped up. They can only target the area where the tumor is. We had an appointment with Dr. Nanda, radiation oncology, and he examined the tumor and said they could do treatment on this area. And oh, he was amazed at my hair. Was bald the last time I saw him.
And then surgery. He recommend that I see a neurosurgeon to discuss possible surgery to remove the lump. I asked him if the lump was in between my skull and the skin on my head. He wasn't sure but wants me to have a MRI of the brain to be sure what we are dealing with before I see the neurosurgeon. This was the option Dr. Sarriera favored. I told him I just want it to go away. Almost 3 years and the lump reappears in the same place it was when I started??? The decision of the radiation only or surgery will be one Bill and I will decide once all appointments are over. No matter which one we choose, Dr. Sarriera has two chemo drugs he will try once surgery or radiation is complete if I can't tolerate the Panobinostat. Both of these will have me shave my head once again. Something I don't want to think about now.
Dr. Sarriera examined the tumor taking measurements. I forgot to ask him what they were so I could compare to the last time it was measured. I told him there were several sore spots and I can fell it "drawing" and pulling. And at times. it hurts. Told him I afraid it is growing downward in my head area and not on top where I can feel it.
We discussed some of my lab results from my Mayo appointment. The main one was IgE. IgE is a type of antibody for your immune system. This was a measurement that was important during my time at Moffitt. It was blown of the chart so far that they couldn't even measure it at the start. Before I left Moffitt it was down to 450. 214 is normal. Right now it's 45,000. This will now added to the Myeloma lab draws. In rare cases, a high level of IgE means Multiple Myeloma somewhere in the blood. Of course, I would be one with this problem. IgE has an essential role in allergic reactions causing sinusitis, asthma, food allergies;. symptoms that show up in the nose, lungs, throat or on the skin.
I left with tears as this is going to be a anxious time for me till these appointments are scheduled and I get the MRI and see the neurosurgeon. I hope and pray I can continue with the Panobinostat, along with my Kyprolis and Dex, as treatment until then. If it works and starts to shrink the tumor, that would be wonderful. No radiation or surgery.
The O4 FaceTimed me tonight making the O5. Cheri, Deb, Sandy and Louise. Was nice talking with them even if I did get emotional at the end. It can be hard at times. But I love that they do that. They were standing outside at Cheri's house. Cheri asked me if there were lightning bugs in Florida. Nope. Sandy tried to get some in our FaceTime camera. Sasha and Ellie loved to see them when they would come to PA during lightning bug time.
Quote:
When you are fighting cancer, it's not just for yourself; it's also for your family and friends.
Monday, June 3, 2019
Curl.
Today, Monday, June 3rd was our appointment at Mayo Clinic in Jacksonville, FL with Dr. Vivek Roy for a consultation about my relapse, once again, of Myeloma. We decided to go to Jacksonville the night before since my appointment was at 8:15 AM. And you all know I am not a morning person.
The hotel we chose to stay at was right on the campus. Courtyard by Marriot. Once we checked in, we started to look for a place to eat. I was craving crab legs. Finally found a place called The Juicy Crab about 5 miles away. OMG. I was in heaven. A pound of crab legs, potatoes and corn on the cob done in a boil. Bill got a pound of shrimp, potatoes and corn on the cob also done in a boil. (Made me think of Bob Curwood and his boils he made. So yummy). They had several seasonings to pick from along with the choice of spice level. The meals come out on metal plates in a bubble wrap of plastic. Eat it out of the bag or pour it on the plate. Bag for a bit and then poured on the plate. Such great food. Now the place, well let me just say it could have been a bit cleaner. That's all I will say.
We were up at 5 this morning to get ready for our appointment and have time for breakfast as well. My breakfast was great. Can't go wrong with a bacon sandwich on an English muffin. Bill's not so good. Tried egg whites. Wasn't a fan of them. Ate, packed and off to the Mayo building just up the road. We registered on the first floor and was then sent to the 3rd floor to wait for our appointment with the doctor, Dr. Roy.
Dr. Roy came in the room and after introducing himself, started reading the info sent by Dr. Sarriera's office asking me questions along the way. Once he was finished reviewing the info and asking a few questions, he told us that the Myeloma I had was very unusual. Usually it's not so localized and would be in several spots throughout my body. Mine is only the lump on my head that has filled in what I called my crater from the original lump 3 years ago. I did asked him if the lump was Myeloma to which he answered yes. He discussed a few other drugs that are possibilities for me. Then Dr. Roy told us he recommended the following options:
1. Surgery followed by radiation - would have to see a neurosurgeon whether at Mayo or UF Health Cancer Center
2. Radiation only - not so sure would be effective as this a large tumor - told him we have already seen a radiologist
3. Clinical trials - at this time, I do not qualify for any - my labs are basically all good - will keep my info and if a trial becomes available, will make sure we get a call
4. Continue with the Panobinostate, Kyprolis and Dex for at least another 3 months - Panobinostat at yet another reduced dosage
He concluded that his recommendation would be option 4 at this time. Said I need to give it a chance to work. I am very willing to do that if we can get the Panobinostat to not cause certain side effects. One being low platelets. He then ordered some labs to be drawn before we left the Clinic. Dr. Roy said to think about all the options whether they be at Mayo or UF Health Cancer Center, he was there to be of help. Done with our appointment and on to get labs drawn. Then ready to head home but we actually saw someone we knew. Mike and Lori. Members of our support group. Haven't seen them for a while. Mike is the Myeloma patient. He did a trial with Darzalex and now is in remission. Was to have a bone marrow transplant. Even harvested his cells. No transplant for now. Said he feels pretty good. We were very happy to hear this. Talked for at least an hour.
Now need to let Dr. Sarriera know what Dr. Roy said. Already sent an emailed Ana, his oncology nurse, all the info. Dr. Roy added his clinical notes to my Mayo portal which I will get a copy to Ana.
My platelets came back at 53 and my bilirubin was 1.7 from the lab draw Dr. Roy had done today. Will see if I get chemo tomorrow.
We decided to take the long scenic way home via A1A. Beautiful, beautiful ocean, dunes, homes. Made me want to rent a place along the ocean for a few days.
There are several commercials we hate hearing. Liberty, liberty, liberty is one that I dislike. But the one that Bill dislikes the most is one where a man is talking about dentures and he says he was able to eat corn on the cob and it made his toes curl. Really stupid.
Quote:
It is easy to forgot how precious it is to be alive.
Today, Monday, June 3rd was our appointment at Mayo Clinic in Jacksonville, FL with Dr. Vivek Roy for a consultation about my relapse, once again, of Myeloma. We decided to go to Jacksonville the night before since my appointment was at 8:15 AM. And you all know I am not a morning person.
The hotel we chose to stay at was right on the campus. Courtyard by Marriot. Once we checked in, we started to look for a place to eat. I was craving crab legs. Finally found a place called The Juicy Crab about 5 miles away. OMG. I was in heaven. A pound of crab legs, potatoes and corn on the cob done in a boil. Bill got a pound of shrimp, potatoes and corn on the cob also done in a boil. (Made me think of Bob Curwood and his boils he made. So yummy). They had several seasonings to pick from along with the choice of spice level. The meals come out on metal plates in a bubble wrap of plastic. Eat it out of the bag or pour it on the plate. Bag for a bit and then poured on the plate. Such great food. Now the place, well let me just say it could have been a bit cleaner. That's all I will say.
We were up at 5 this morning to get ready for our appointment and have time for breakfast as well. My breakfast was great. Can't go wrong with a bacon sandwich on an English muffin. Bill's not so good. Tried egg whites. Wasn't a fan of them. Ate, packed and off to the Mayo building just up the road. We registered on the first floor and was then sent to the 3rd floor to wait for our appointment with the doctor, Dr. Roy.
Dr. Roy came in the room and after introducing himself, started reading the info sent by Dr. Sarriera's office asking me questions along the way. Once he was finished reviewing the info and asking a few questions, he told us that the Myeloma I had was very unusual. Usually it's not so localized and would be in several spots throughout my body. Mine is only the lump on my head that has filled in what I called my crater from the original lump 3 years ago. I did asked him if the lump was Myeloma to which he answered yes. He discussed a few other drugs that are possibilities for me. Then Dr. Roy told us he recommended the following options:
1. Surgery followed by radiation - would have to see a neurosurgeon whether at Mayo or UF Health Cancer Center
2. Radiation only - not so sure would be effective as this a large tumor - told him we have already seen a radiologist
3. Clinical trials - at this time, I do not qualify for any - my labs are basically all good - will keep my info and if a trial becomes available, will make sure we get a call
4. Continue with the Panobinostate, Kyprolis and Dex for at least another 3 months - Panobinostat at yet another reduced dosage
He concluded that his recommendation would be option 4 at this time. Said I need to give it a chance to work. I am very willing to do that if we can get the Panobinostat to not cause certain side effects. One being low platelets. He then ordered some labs to be drawn before we left the Clinic. Dr. Roy said to think about all the options whether they be at Mayo or UF Health Cancer Center, he was there to be of help. Done with our appointment and on to get labs drawn. Then ready to head home but we actually saw someone we knew. Mike and Lori. Members of our support group. Haven't seen them for a while. Mike is the Myeloma patient. He did a trial with Darzalex and now is in remission. Was to have a bone marrow transplant. Even harvested his cells. No transplant for now. Said he feels pretty good. We were very happy to hear this. Talked for at least an hour.
Now need to let Dr. Sarriera know what Dr. Roy said. Already sent an emailed Ana, his oncology nurse, all the info. Dr. Roy added his clinical notes to my Mayo portal which I will get a copy to Ana.
My platelets came back at 53 and my bilirubin was 1.7 from the lab draw Dr. Roy had done today. Will see if I get chemo tomorrow.
We decided to take the long scenic way home via A1A. Beautiful, beautiful ocean, dunes, homes. Made me want to rent a place along the ocean for a few days.
There are several commercials we hate hearing. Liberty, liberty, liberty is one that I dislike. But the one that Bill dislikes the most is one where a man is talking about dentures and he says he was able to eat corn on the cob and it made his toes curl. Really stupid.
Quote:
It is easy to forgot how precious it is to be alive.
Tuesday, May 28, 2019
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.
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.
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.
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