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.
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