Australia
So the labs are back. Not good. I received a call from Dr. Sarriera on Thursday. Left message to call him back. We knew if he called, that wasn't good. Finally we were able to connect. He started by saying the labs were back and the light chains are not good. They are getting higher. October they were 2.03, November 10.3 and December 20.2 He said he didn't want me to be with out some sort of treatment seeing this.
I will be taking a chemo pill called Selinexor (Xpovio) on day 1 and 3 along with Dex each week. No week off. So day 1 could be Monday and day 3 would be Wednesday or day 1 Tuesday and day 3 would be Thursday. I will be taking 80 mg of the Selinexor and 10 mg of the Dex on each of those days. . Not sure when I will be starting as we are waiting on my insurance company to approve.
This pill has been FDA approved in July of this year (2019). There were several clinical trials prior to the approval. So a fairly new drug for Myeloma patients who have relapsed after several treatment plans not working. That would be me.
As with most drugs, there are side effects. Deficiency of platelets, neutropenia, nausea, GI problems, fatigue, infections etc, etc. We will just have to see what, if any, will be my side effects. Of course, we know the Dex will cause a mild rash, not letting me sleep, making me sleep, crying for no reason. And I will be taking this twice a week instead of once. Poor Bill.
Again, none of this will be started until I get the prescription of the Selinexor. The pharmacy at the Cancer Center has been wonderful. They have mailed my last few prescriptions directly to me since we weren't coming in to the Cancer Center. They will call me once this one is ready.
I know you all are saying to me, this is the one that's going to work. I appreciate it but sometimes, I would rather not hear that. But say it as you want because I hope and pray you are all right.
I ask Kristi for a few suggestions for the girls for Christmas. She gave me one for Ellie for a sweatshirt. I ordered it right away because of the possibility it may sell out. Didn't really pay attention to where it would be shipped from just when it would be shipped. Got an email saying it was being processed for shipping. Then read it would be shipping from Australia. Oh. It's not going to not be here for Christmas. :) Will print a picture of a kangaroo and put in a box and wrap it.
Heard from our friends Joanie and Harry. Harry has been in the hospital (John Hopkins) for 11 days. Not sure what is wrong. Started out as shingles. Has been through a lot the last 11 days. Please say few prayers for him and for Joanie as the care giver.
Quote:
Cancer doesn't define you; strength and courage does.
Sunday, December 22, 2019
Tuesday, December 17, 2019
No
Today was my appointment with Dr. Sarriera. As I had mentioned in the last post, I stopped taking the Thalidomide. The fatigue, the foggy head, the increased neuropathy, the no energy, the tears was not the way I wanted to be each day. It took a few days but I was finally able to be a little like myself. Never will be my old self but I could at least function. Was able to get in my sewing room, wrap gifts, help get the tree up (Sasha and Ellie help decorate the tree), do some decorations in my house. Nothing like I used to but it looks a bit like Christmas. Do like our new tree. We were even able to have Michelle and Gery over for dinner and dimes. I still have the fatigue (chemo and cancer keeps that around for a long time) but nothing like I felt when on the Thalidomide.
Dr. Sarriera came in to the room and started by asking how I was feeling. Told him a lot better since I am not taking the Thalidomide. He did a quick exam and we talked. He said maybe we decrease the dosage of the Thalidomide to 50 to see how that would work with the side effects. I and Bill agrees, this family of drugs hasn't ever worked for me. Revlimid and Pomalyst are part of that family and we know the reactions from them. So Dr. Sarriera said he wanted to see how the numbers are when the labs come back. Had labs drawn for Myeloma today. Then depending on how they look, he would order a PetScan to see if the Myeloma is still in my legs and if somewhere else. No chemo or Dex for now. By this time, I am in tears. Tears of I have had enough. Tears of where do we go from here. We discussed the option of going back on Darzalax and Kyprolis. Bill and I remember this treatment was the one that worked the best for me out of all the various treatments I have had over the last almost 4 years but stopped working once I went from every other week to once a month. Is this the way to go?? Maybe, just maybe, this may work again even if its only for several months to help prolong my life. Once the PetScan is done and results back, there is a possibility of some radiation. This would depend on how many lesions are showing and where, if any. Since radiation is usually localized, this could be hard to do. Is this the way to go?? Again, have to wait on the PetScan results. We could go with a high dosage of chemo. One that I would be in the hospital for several days. This would be like the high dosage of chemo I had when I had my transplant. Would knock all my blood counts down, nausea, skitters, lose my hair, no energy. I remember it all from the transplant. Is this the way to go??? Is this going to prolong my life? Again, Dr. Sarriera wants to see the numbers from the labs. No follow up appointment necessary until, you guessed it, the labs are all back. Left the office in tears. Bill and I have been upset about all this all evening. Just will take one day at a time, one day at a time. That's all we can do.
And I have to tell you all that the bubble in Bill's eye has dissipated. Yeah. His site is still a bit distorted but the hole is still healing. And he is so happy that he no longer has to look through a million floaters.
With the holidays here, I remember things that our grandkids have done or said over the years. One that sticks in my mind especially when I am wrapping gifts is one of Kristopher. We were handing out the presents and he realized after a while, if it was a shirt box wrapped gift it was probably clothes. So if we handed him a shirt box wrapped gift, he would hand it back and say "No"!!
Quote:
No matter what the weather is during your cancer journey, always bring your own sunshine.
Today was my appointment with Dr. Sarriera. As I had mentioned in the last post, I stopped taking the Thalidomide. The fatigue, the foggy head, the increased neuropathy, the no energy, the tears was not the way I wanted to be each day. It took a few days but I was finally able to be a little like myself. Never will be my old self but I could at least function. Was able to get in my sewing room, wrap gifts, help get the tree up (Sasha and Ellie help decorate the tree), do some decorations in my house. Nothing like I used to but it looks a bit like Christmas. Do like our new tree. We were even able to have Michelle and Gery over for dinner and dimes. I still have the fatigue (chemo and cancer keeps that around for a long time) but nothing like I felt when on the Thalidomide.
Dr. Sarriera came in to the room and started by asking how I was feeling. Told him a lot better since I am not taking the Thalidomide. He did a quick exam and we talked. He said maybe we decrease the dosage of the Thalidomide to 50 to see how that would work with the side effects. I and Bill agrees, this family of drugs hasn't ever worked for me. Revlimid and Pomalyst are part of that family and we know the reactions from them. So Dr. Sarriera said he wanted to see how the numbers are when the labs come back. Had labs drawn for Myeloma today. Then depending on how they look, he would order a PetScan to see if the Myeloma is still in my legs and if somewhere else. No chemo or Dex for now. By this time, I am in tears. Tears of I have had enough. Tears of where do we go from here. We discussed the option of going back on Darzalax and Kyprolis. Bill and I remember this treatment was the one that worked the best for me out of all the various treatments I have had over the last almost 4 years but stopped working once I went from every other week to once a month. Is this the way to go?? Maybe, just maybe, this may work again even if its only for several months to help prolong my life. Once the PetScan is done and results back, there is a possibility of some radiation. This would depend on how many lesions are showing and where, if any. Since radiation is usually localized, this could be hard to do. Is this the way to go?? Again, have to wait on the PetScan results. We could go with a high dosage of chemo. One that I would be in the hospital for several days. This would be like the high dosage of chemo I had when I had my transplant. Would knock all my blood counts down, nausea, skitters, lose my hair, no energy. I remember it all from the transplant. Is this the way to go??? Is this going to prolong my life? Again, Dr. Sarriera wants to see the numbers from the labs. No follow up appointment necessary until, you guessed it, the labs are all back. Left the office in tears. Bill and I have been upset about all this all evening. Just will take one day at a time, one day at a time. That's all we can do.
And I have to tell you all that the bubble in Bill's eye has dissipated. Yeah. His site is still a bit distorted but the hole is still healing. And he is so happy that he no longer has to look through a million floaters.
With the holidays here, I remember things that our grandkids have done or said over the years. One that sticks in my mind especially when I am wrapping gifts is one of Kristopher. We were handing out the presents and he realized after a while, if it was a shirt box wrapped gift it was probably clothes. So if we handed him a shirt box wrapped gift, he would hand it back and say "No"!!
Quote:
No matter what the weather is during your cancer journey, always bring your own sunshine.
Sunday, December 1, 2019
Home
Barbara, so full of life, happy, beautiful. Some of you already saw my post about Barbara. I met Barbara at my oncologist's office. Desiree had given her information about our Myeloma support group meetings and she wanted to meet me before the next meeting. We talked for a long time once introduced. This was at the end of May. She did make it to our meeting in June. Again, so upbeat and joked about not having any hair yet. Recently had a transplant. Barb and I IM'd each other off and on the rest of June and part of July. I was preparing for my brain surgery and she had been diagnosed with a mass on her brain. Very aggressive mass. I feel bad because I lost contact with her as my surgery kept me in the hospital for 26 days. Once out, I had physical therapy, occupational theory, learning to walk again, dress again, shower again, gain control of my left arm so it wasn't just hanging on and on. All this with the help of my sister Deb for several weeks. I have a few voice texts from Barb that I have played a few times. The smile in her voice makes me happy. Barbara has passed. So hard to believe. She was only diagnosed with Multiple Myeloma last September. And then this mass appeared. Will miss her.
I finally emailed Dr. Sarriera and told him I could not take the way the Thalidomide was making me feel. No energy, foggy head most of the day, tired, just wanted to sleep, neuropathy was getting worse. No quality of life. Just wasn't good. He gave me the option of decreasing the dosage or stop taking the Thalidomide. I stopped taking the pill on November 26th. We will discuss where to go from here during my next appointment with him on the 17th of December. I know stopping the pill has helped some. It was my decision. Just couldn't do it any more. Am to still take the Dex every Friday. Was this the right decision? Well, at this time I am saying yes. Needed some life back.
Then on November 27th, I broke out in hives. Around my hair line, above my eye brows and across the lower area of the back of my neck. Not itchy hives, thankful for that. I used some essential oils for several days. Seemed to help take the puffiness out of the areas where the hives are. And then I used some aloe once they started to feel itchy. This from an aloe plant that I have grown from a piece of Kerri's aloe plant. The aloe works well for the itchy. I sent an email to Ana, Dr. Sarriera's nurse, so should hear from her with in a day or so. Dr. Sarriera has Monday's off.
As most of you know my sister, Deb, flew down to help Bill and me while I recovered. Was so great to have the help. She made it possible to overcome many challenges. Nearing the time she was getting ready to go back home, Donnie told her to stay as long as she needed to. Just wanted her to be home by Thanksgiving to make him a Thanksgiving dinner. And she was.
Quote:
Hope for the fighters, peace for the survivors and prayers for the taken. Together we are stronger than cancer.
Barbara, so full of life, happy, beautiful. Some of you already saw my post about Barbara. I met Barbara at my oncologist's office. Desiree had given her information about our Myeloma support group meetings and she wanted to meet me before the next meeting. We talked for a long time once introduced. This was at the end of May. She did make it to our meeting in June. Again, so upbeat and joked about not having any hair yet. Recently had a transplant. Barb and I IM'd each other off and on the rest of June and part of July. I was preparing for my brain surgery and she had been diagnosed with a mass on her brain. Very aggressive mass. I feel bad because I lost contact with her as my surgery kept me in the hospital for 26 days. Once out, I had physical therapy, occupational theory, learning to walk again, dress again, shower again, gain control of my left arm so it wasn't just hanging on and on. All this with the help of my sister Deb for several weeks. I have a few voice texts from Barb that I have played a few times. The smile in her voice makes me happy. Barbara has passed. So hard to believe. She was only diagnosed with Multiple Myeloma last September. And then this mass appeared. Will miss her.
I finally emailed Dr. Sarriera and told him I could not take the way the Thalidomide was making me feel. No energy, foggy head most of the day, tired, just wanted to sleep, neuropathy was getting worse. No quality of life. Just wasn't good. He gave me the option of decreasing the dosage or stop taking the Thalidomide. I stopped taking the pill on November 26th. We will discuss where to go from here during my next appointment with him on the 17th of December. I know stopping the pill has helped some. It was my decision. Just couldn't do it any more. Am to still take the Dex every Friday. Was this the right decision? Well, at this time I am saying yes. Needed some life back.
Then on November 27th, I broke out in hives. Around my hair line, above my eye brows and across the lower area of the back of my neck. Not itchy hives, thankful for that. I used some essential oils for several days. Seemed to help take the puffiness out of the areas where the hives are. And then I used some aloe once they started to feel itchy. This from an aloe plant that I have grown from a piece of Kerri's aloe plant. The aloe works well for the itchy. I sent an email to Ana, Dr. Sarriera's nurse, so should hear from her with in a day or so. Dr. Sarriera has Monday's off.
As most of you know my sister, Deb, flew down to help Bill and me while I recovered. Was so great to have the help. She made it possible to overcome many challenges. Nearing the time she was getting ready to go back home, Donnie told her to stay as long as she needed to. Just wanted her to be home by Thanksgiving to make him a Thanksgiving dinner. And she was.
Quote:
Hope for the fighters, peace for the survivors and prayers for the taken. Together we are stronger than cancer.
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