Yesterday was Day 1 of my husband's Revlimid, Velcade, and dexamethasone treatment. He had 20 mg of dex this morning, Velcade injection this afternoon, and then his first Revlimid pill last night. I will post progress as we go along.
We did find out that the compression fracture he is suffering with, unfortunately, is at one of the screws on T10. The hematologist-oncologist and neuro-oncologist want to wait until September to see what happens and talk about repair. As the screw is in the pedicle, they are concerned with leakage. They are switching him to an extended relief pain medication in the hopes that he'll receive longer pain relief.
I provided some background information on my husband's diagnosis in our introductory forum thread, in case anyone is interested.
Forums
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: My husband's RVD treatment experience
End of week one of cycle one is here. Stephen's regimen is as follows: Revlimid nightly; Tuesday Velcade + 20 mg dex; Wednesday 20 mg dex; Thursday a bad day. Friday Velcade + 20 mg dex; Saturday 20 mg dex; Sunday and Monday bad days.
Not sure if it's the lack of dex or the side effects of all medications. Thursday, Sunday, and Monday added pain in lower back and in ribs on both sides. Thursday he felt like he was in a corset off and on as the ribs were so tight. Velcade site injections produced a two-inch diameter red patch. Prescription steroid cream eliminated those in two days.
He sleeps well as Revlimid is taken nightly. But the off dex days were really tough. Eight weeks out from back surgery and he's still on heavy pain meds. Counting down to the week off between cycles.
Not sure if it's the lack of dex or the side effects of all medications. Thursday, Sunday, and Monday added pain in lower back and in ribs on both sides. Thursday he felt like he was in a corset off and on as the ribs were so tight. Velcade site injections produced a two-inch diameter red patch. Prescription steroid cream eliminated those in two days.
He sleeps well as Revlimid is taken nightly. But the off dex days were really tough. Eight weeks out from back surgery and he's still on heavy pain meds. Counting down to the week off between cycles.
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: My husband's RVD treatment experience
Last night was the final Revlimid of cycle 1. It's been a really tough weekend. I guess it's all the medications building up in Stephen's system.
Saturday afternoon through yesterday, he was in extreme bone pain, terrible nausea, horrible cramps in his hands, and just exhausted. It's difficult to get him to eat anything, as taste is off and nausea abounds. Speaking with the doctor's nurse yesterday, she advised Zofran (ondansetron) 3x per day for the nausea. The doctor is also advising a bump down in Revlimid dose. I know it's early in the game, but nothing helps the cramps.
He goes for bloodwork today before the next Revlimid ships. He's going to insist on a complete blood panel to see if his red blood count has dropped more.
As a caregiver, it's very hard to watch him go through this. But we remain hopeful there are better days to come. He's thankful for this week of break from RVD medication.
Saturday afternoon through yesterday, he was in extreme bone pain, terrible nausea, horrible cramps in his hands, and just exhausted. It's difficult to get him to eat anything, as taste is off and nausea abounds. Speaking with the doctor's nurse yesterday, she advised Zofran (ondansetron) 3x per day for the nausea. The doctor is also advising a bump down in Revlimid dose. I know it's early in the game, but nothing helps the cramps.
He goes for bloodwork today before the next Revlimid ships. He's going to insist on a complete blood panel to see if his red blood count has dropped more.
As a caregiver, it's very hard to watch him go through this. But we remain hopeful there are better days to come. He's thankful for this week of break from RVD medication.
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: My husband's RVD treatment experience
Yesterday's post-cycle blood work revealed a platelet drop to 9. In that Stephen had been feeling so unwell all weekend, he received fluids treatment at the doctor's office. Today he received an infusion of platelets. This is his "off" week (no medications), which is normally when Revlimid, is reordered, but nothing is going to happen until he meets with his hematologist-oncologist on Tuesday. Therefore, there will be a break in cycle. I suppose, like others, you learn to recognize something is not right when it actually happens. I'll know the signs of this going forward.
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: My husband's RVD treatment experience
Stephen took a hard turn for worst. I woke up this morning to find him unresponsive. He was transported to the local emergency room with severe breathing difficulty, heart arrythmia, fever, low blood pressure, and pneumonia. His blood pressure sky rocketed, then dropped all day long. This evening they paddled him low dose and this got his heart back into normal rhythm. He is intubated and under sedation. He's on lots of antibiotics for the infection, and tomorrow we should hopefully know which infection he has.
His hematologist-oncologist stopped at ER. He said this is way out of the normal for the RVD treatment. Stephen told me yesterday he was feeling better, but evidently there was something else going on. Of course his immune system is compromised, so they are hitting him hard with antibiotics. It's difficult to see him so helpless and hooked up to an ungodly amount of IVs and wires. I remain cautiously hopeful, and I know he is in good hands.
His hematologist-oncologist stopped at ER. He said this is way out of the normal for the RVD treatment. Stephen told me yesterday he was feeling better, but evidently there was something else going on. Of course his immune system is compromised, so they are hitting him hard with antibiotics. It's difficult to see him so helpless and hooked up to an ungodly amount of IVs and wires. I remain cautiously hopeful, and I know he is in good hands.
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: My husband's RVD treatment experience
I am so so sorry to hear of this turn of events. Hang in there. We will be thinking of Stephen and sending you both strength to get through this. My best wishes, Courtenay
Re: My husband's RVD treatment experience
Just wanted to say thinking of you in this difficult time. I am so sorry your husband is having such a rough time. Hopefully by now he is better. Sending love and positive energy.
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: My husband's RVD treatment experience
It is with a heavy heart that I write that Stephen passed away yesterday afternoon. He had just completed one cycle of induction therapy. His blood platelets had dropped to 9, and he was given an infusion of platelets on Wednesday. He seemed fatigued and had no appetite, but otherwise okay. On Thursday, I woke to find him in breathing distress and unresponsive. He was transported to a local ER, and immediately intubated and sedated. His heart rate was erratic, blood pressure all over the place, running a high fever, had pneumonia and sepsis. He was transported quickly to ICU, where he received extremely great care. By end of day Wednesday, they paddled him to successfully get his heart rhythm back to normal, as he was in atrial fibrillation. A heart echo revealed he had suffered a heart attack as well.
His body continued to deteriorate. He developed sepsis. The doctors and nurses tried everything they could to stabilize him. By mid morning his kidneys completely shut down. They attempted a slow continuous dialysis, but his blood quickly turned more toxic. With his brother, his best friend, and me at his side, we discontinued all support. He passed peacefully 10 minutes later.
Life is fragile. The human body is fragile. Everyone is different. Stephen's immune system could not fight what was happening. His poor body was tired, so it was time to let him go.
I am devastated, but life will eventually go on. I was blessed to have him with me nine years. He was a kind soul and treated me like a queen. I will forever be grateful to have shared his life.
My love and best to all of you. Don't ever stop fighting.
His body continued to deteriorate. He developed sepsis. The doctors and nurses tried everything they could to stabilize him. By mid morning his kidneys completely shut down. They attempted a slow continuous dialysis, but his blood quickly turned more toxic. With his brother, his best friend, and me at his side, we discontinued all support. He passed peacefully 10 minutes later.
Life is fragile. The human body is fragile. Everyone is different. Stephen's immune system could not fight what was happening. His poor body was tired, so it was time to let him go.
I am devastated, but life will eventually go on. I was blessed to have him with me nine years. He was a kind soul and treated me like a queen. I will forever be grateful to have shared his life.
My love and best to all of you. Don't ever stop fighting.
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: My husband's RVD treatment experience
Oh, my. I'm so sorry.
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: My husband's RVD treatment experience
Oh Shirley, I am sooo sorry. I have been reading your posts about your husband's diagnosis and initial treatment. The information you provided was interesting and I looked forward to hearing how he was doing. Today's update is shocking and so sad. I couldn't believe my eyes. It was just too sobering. We are all on a journey, sometimes twisted, strange, and bewildering. Thank you for connecting with the Beacon group and sharing your experiences. I hope you will heal from these very difficult several months.
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WholeNotherWorld - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 67
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