WaWa
Well its been awhile since I have blogged. A lot has happened during that time frame. I continued taking the Selinexnor off and on for several weeks. This drug made me nauseous, had no appetite, and in bed all day. No quality of life. Had to have fluid drip several times. Had a pharmacist, Cassie, assigned to my case. Had to have labs drawn and she decided if I was to take the Selinexor. She and Dr. Sarriera decreased the dosage from 160 mg to 100 mg. Still the same side effects. I couldn't stand the "no quality of life". Was taken off Selinexor. Pet scan February 6th. I have been chemo free since February 11th, my appointment with Dr. Sarriera. An appointment Bill and I knew we would be hearing what we didn't want to hear. There are no more drugs for me to take. This has us very scared. I am done with treatments. NO MORE DRUGS FOR ME. I have depleted them. Done. Can't repeat some of them because I progressed while on them. Had Myeloma labs drawn. My M-spike is still 0.
My Lambda Free Light Chain has increased to 35.4 - 0.5700-2.63 are the normal range markers. I am way above that. Last lab draw in December was 20.2. Really showed an increase in Feb to 35.4. Jan was 10.3. Lambda light chain keeps increasing. So the drugs I was on were not working.
We, through tears, asked Dr. Sarriera what was next if no drugs. Best thing would be a clinical trial. My problem is I do not have the markers they are looking for to be eligible for a trial. Dr. Sarriera is thinking since my Lambda light chain is increasing, this may qualify me for a trial if one could be found. So we are praying for a trial. He would reach out to Moffiit, in Tampa, to set me up with an appointment with a Myeloma specialist. This has been done and I have an appointment on the 23rd of March. When Moffitt called to set up an appointment, they had not received my medical records of yet. I was told once they received my records, they could see if they could get me in sooner. Also, Dr. Sarriera wants me to see a pain management doctor. May not need it so much now but may need later. That appointment is set for March 5th. Sarriera prescribe a pill to take for the tenderness around the head lesions. I need to go to the cancer center to pick it up.
Another suggestion was for me to go in the hospital and they would give me a high dose of chemo. This chemo treatment is like the one I had during my transplant. Be very, sick, lose my hair are some of the side effects. This, Dr. Sarriera, says may cause me not to be able to qualify for a trial. So that is on hold for now. We are hoping and praying the appointment on the 23rd sheds a new light on our situation.
Also, on top of all this, I got a sinus infection. Was doctoring between Dr. Sarriera and my family doctor. Chest X-ray (lungs clear), antibiotics, breathing treatment, a $100 inhaler but I finally think I kicked it.
So right now I am very scared. Scared because I am not on a treatment plan. Scared because I have several lumps on my head. Scared because around some of these lesions/lumps, it is very tender to the touch. Scared because I can feel drawing and pulling around these lumps. Scared because my pet scan showed new tumors in my legs on my tibia. Scared because I am just scared.
Bill and I finally went to a WaWa, first time ever. Stopped for gas. It reminded me of Sheetz even though I didn't go inside.
Quote:
Go ahead and scream, go ahead and cry but never give up. Cancer sucks!
Tuesday, February 25, 2020
Monday, January 6, 2020
Big
Probably a long one.
First we have really been blessed with this beautiful dog. I know some of you aren't dog persons, not sure how you can't be. But that's okay. We named her Leeta. Sasha was my name helper. Her name at the foster's house was Lolita. We took her on a 7 day trial November 8th and still have her. Leeta has ben great for Bill even waking him up some days at 6. They walk each morning. Been cold here. Cold for us in the AM. Bill said he is going to look for some gloves. Holding the leash attached to her is cold. Again, what a joy even though Bill's singing to her can be annoying at times. He used to sing to Tommy too.
Deb, my sister Deb. There are days I miss her loving, caring ways with me. Not to help shower, (we have stories of that :0 ), not to help me with my left arm dangling (no longer does), not to help me with walking(I may walk funny but I can walk), not to help me get to the bath room (no problems there), to sleep on a lounge chair for days, not to help me dress(got that down). But patiently sat with me when I tired to remember passwords, fixed my hair, and let me complain and bite her tongue, remembered my therapy exercises for me. Just those little things that are really big things to us. Just miss her at times. So glad I had Bill to pick up where she left off. He, of course, is my main rock. Always there for a suggestion, to encourage me through something, listen to my thoughts and love me through all the hoopla we are going through right now.
I started my new plan on December 30th. So was able to enjoy New Years Eve as didn't have any side effects yet. Some of you mention that it looked like I was having a good time and this is why. Side effects started on the 1st of January.
I am to take 8 mg of Dex on day1 when I take my Selinexinor. That is 80 mg. This was started December 30. Jan 1st dose number 2. Several days of fatigue causing me to be in bed most of the day. Waves of nausea when I was up. Dr. Sarriera prescribed Zofran for that. This comes with its own set of side effects. I have also been taking Digize oil for the nausea. And putting ginger oil in my tea. I do exercises as I can. Walk around pool or around my house going from kitchen, hallway, living room, dining room, back to kitchen. Not a lot but if I can do it, I do it. Jamie would be proud of my 25 laps. At one time, one lap in the house was a struggle. Trying to eat 5 or 6 small meals a day instead of large ones.
Week 2
January 6th. Had a decent day today. Haven't taken anything since last Wednesday. Struggled through Thursday and the weekend with the nausea and fatigue. I even missed Ellie's birthday dinner. :(
Took my Dex at 11
Selinexnor at 4.
Dex it working like it used to. Not tired yet. Making me bitchy too. Look out. Wait, there is no one here to lash out to. Bill is in bed. Leeta sound to sleep on the couch in the family room. Neighbors all in bed too. WAKE UP Michelle. Need to vent. Just kidding. Okay stopping this.
Soon my sister, Matt, Connie and Madeleine will be here. As well as my brother, Leslie, Marcy and Aubrey. So excited. Also will be seeing Mark and Irene. Mitzi and Greg too. Sandy and Denny are flying down for several weeks also. All for Ellie's Bat Mitzvah. Did I say how excited I am? Hoping by then I have whipped some of these side effects.
My next appointment with Dr. Sarriera is January 15th. Will do CBC and CMP labs one hour before.
When we went for a visit to see Lolita we learned at time she had been dropped off at a shelter. Don't know why. Poodle and Pooch rescued her. She immediately made up to Bill. Oh, he had treats in his pocket. Anyway, when she was dropped off, her name was Big Sexy. What?
Quote:
Since diagnosed with cancer, every day is a bonus.
Probably a long one.
First we have really been blessed with this beautiful dog. I know some of you aren't dog persons, not sure how you can't be. But that's okay. We named her Leeta. Sasha was my name helper. Her name at the foster's house was Lolita. We took her on a 7 day trial November 8th and still have her. Leeta has ben great for Bill even waking him up some days at 6. They walk each morning. Been cold here. Cold for us in the AM. Bill said he is going to look for some gloves. Holding the leash attached to her is cold. Again, what a joy even though Bill's singing to her can be annoying at times. He used to sing to Tommy too.
Deb, my sister Deb. There are days I miss her loving, caring ways with me. Not to help shower, (we have stories of that :0 ), not to help me with my left arm dangling (no longer does), not to help me with walking(I may walk funny but I can walk), not to help me get to the bath room (no problems there), to sleep on a lounge chair for days, not to help me dress(got that down). But patiently sat with me when I tired to remember passwords, fixed my hair, and let me complain and bite her tongue, remembered my therapy exercises for me. Just those little things that are really big things to us. Just miss her at times. So glad I had Bill to pick up where she left off. He, of course, is my main rock. Always there for a suggestion, to encourage me through something, listen to my thoughts and love me through all the hoopla we are going through right now.
I started my new plan on December 30th. So was able to enjoy New Years Eve as didn't have any side effects yet. Some of you mention that it looked like I was having a good time and this is why. Side effects started on the 1st of January.
I am to take 8 mg of Dex on day1 when I take my Selinexinor. That is 80 mg. This was started December 30. Jan 1st dose number 2. Several days of fatigue causing me to be in bed most of the day. Waves of nausea when I was up. Dr. Sarriera prescribed Zofran for that. This comes with its own set of side effects. I have also been taking Digize oil for the nausea. And putting ginger oil in my tea. I do exercises as I can. Walk around pool or around my house going from kitchen, hallway, living room, dining room, back to kitchen. Not a lot but if I can do it, I do it. Jamie would be proud of my 25 laps. At one time, one lap in the house was a struggle. Trying to eat 5 or 6 small meals a day instead of large ones.
Week 2
January 6th. Had a decent day today. Haven't taken anything since last Wednesday. Struggled through Thursday and the weekend with the nausea and fatigue. I even missed Ellie's birthday dinner. :(
Took my Dex at 11
Selinexnor at 4.
Dex it working like it used to. Not tired yet. Making me bitchy too. Look out. Wait, there is no one here to lash out to. Bill is in bed. Leeta sound to sleep on the couch in the family room. Neighbors all in bed too. WAKE UP Michelle. Need to vent. Just kidding. Okay stopping this.
Soon my sister, Matt, Connie and Madeleine will be here. As well as my brother, Leslie, Marcy and Aubrey. So excited. Also will be seeing Mark and Irene. Mitzi and Greg too. Sandy and Denny are flying down for several weeks also. All for Ellie's Bat Mitzvah. Did I say how excited I am? Hoping by then I have whipped some of these side effects.
My next appointment with Dr. Sarriera is January 15th. Will do CBC and CMP labs one hour before.
When we went for a visit to see Lolita we learned at time she had been dropped off at a shelter. Don't know why. Poodle and Pooch rescued her. She immediately made up to Bill. Oh, he had treats in his pocket. Anyway, when she was dropped off, her name was Big Sexy. What?
Quote:
Since diagnosed with cancer, every day is a bonus.
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