I am a 77 year old woman and newly diagnosed with multiple myeloma about 6 weeks ago. I am still in shock, but nevertheless spending several hours a day researching this disease.
After getting a second opinion from a multiple myeloma expert at the Mayo Clinic in Jacksonville, Florida, I will have begun treatment later at our local oncology clinic. The original treatment plan included Revlimid, Velcade, and dexamethasone. When our insurance denied coverage for the Revlimid, I asked for a substitute. Thankfully, the Mayo doc highly recommended the triplet therapy cyclophosphamide (Cytoxan), Velcade, and dexamethasone (CyBorD). He assured me that Cytoxan, an older drug, is equally effective.
If anyone who has been treated with CyBorD has any advice or tips for me, particularly in regard to side effects that I should expect, I'd certainly appreciate your input.
Thanking you in advance, this is Kristine in New Smyrna Beach, Florida.
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Re: Newly diagnosed, scared, and starting CyBorD treatment
Hi JouJou113,
Welcome to the forum, but sorry to hear that you are having to start treatment. If you are being seen at the Mayo, you are in very good hands.
You might find these forum threads to be helpful.
You can also use the advanced search function at the top of this page to look for other threads about CyBorD (aka VCD).
Welcome to the forum, but sorry to hear that you are having to start treatment. If you are being seen at the Mayo, you are in very good hands.
You might find these forum threads to be helpful.
You can also use the advanced search function at the top of this page to look for other threads about CyBorD (aka VCD).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed, scared, and starting CyBorD treatment
CyBorD is a very common myeloma treatment regimen in Canada, Australia, and I think New Zealand as well. One side effect common to dexamethasone is a sleepless night the day it is taken. I recommend you record a bunch of TV shows you like and watch them that once-a-week sleepless night which dexamethasone can cause.
Also, my dad, who was on dexamethasone, did not lose his hair.
Also, my dad, who was on dexamethasone, did not lose his hair.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Newly diagnosed, scared, and starting CyBorD treatment
My husband was on this same induction regimen and the only side effect he had was to feel better. He slept fine, was not sick, and did not lose his hair. Good luck to you.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Newly diagnosed, scared, and starting CyBorD treatment
Hi JouJou113,
My father was diagnosed with lambda light chain multiple myeloma 2 weeks ago. He is age 75 and will be starting a 5 month CyBorD regimen next week.
He is also apprehensive about starting treatment, but his haematologist has reassured him that any side effects can be dealt with promptly. He has been recommended to use a miconazole mouth wash prophylactically to prevent sore mouth and antivirals to combat the risk of shingles, etc.
Best of luck in your treatment journey.
My father was diagnosed with lambda light chain multiple myeloma 2 weeks ago. He is age 75 and will be starting a 5 month CyBorD regimen next week.
He is also apprehensive about starting treatment, but his haematologist has reassured him that any side effects can be dealt with promptly. He has been recommended to use a miconazole mouth wash prophylactically to prevent sore mouth and antivirals to combat the risk of shingles, etc.
Best of luck in your treatment journey.
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Colette - Name: Colette
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: 29/07/2016
- Age at diagnosis: 75
Re: Newly diagnosed, scared, and starting CyBorD treatment
I started on CyBorD when I was diagnosed in April 2015 at age 67. After 3 months, I was in remission, and I started preparing for an autologous stem cell transplant.
The CyBorD side effects were minimal for me; I was chatty the day I took the dexamethasone, and I had sight numbness in some toes.
I hope you have similar good results with the CyBorD treatment regimen.
Best Wishes,
Gary Williams
The CyBorD side effects were minimal for me; I was chatty the day I took the dexamethasone, and I had sight numbness in some toes.
I hope you have similar good results with the CyBorD treatment regimen.
Best Wishes,
Gary Williams
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Gary D - Name: Gary D
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 67
Re: Newly diagnosed, scared, and starting CyBorD treatment
Thank you so much, everyone. Your comments are very helpful.
My first round of cyclophosphamide, Velcade, and dexamethasone (CyBorD) will be completed this Wednesday and the follow-up labs are drawn on Friday.
I am happy to report that the side effects are minimal after reducing the dose of Velcade by more than one half. 2-3 days post the Velcade injections, I had neuropathy, weakness and imbalance in my legs, severe hypotension (60/42), and blurred vision. The local oncologist ordered 2.5 mg 2x weekly. The myeloma specialist at the Mayo Clinic reduced the Velcade dose to 1.3 mg once a week. Thankfully, the local oncologist agreed. Within a few days the nerve pain in my legs was gone and the fog lifted from my vision. My legs are still weak and my gait is still unsteady, but this I can happily live with.
Again, thank you for your input.
Kristine
My first round of cyclophosphamide, Velcade, and dexamethasone (CyBorD) will be completed this Wednesday and the follow-up labs are drawn on Friday.
I am happy to report that the side effects are minimal after reducing the dose of Velcade by more than one half. 2-3 days post the Velcade injections, I had neuropathy, weakness and imbalance in my legs, severe hypotension (60/42), and blurred vision. The local oncologist ordered 2.5 mg 2x weekly. The myeloma specialist at the Mayo Clinic reduced the Velcade dose to 1.3 mg once a week. Thankfully, the local oncologist agreed. Within a few days the nerve pain in my legs was gone and the fog lifted from my vision. My legs are still weak and my gait is still unsteady, but this I can happily live with.
Again, thank you for your input.
Kristine
Re: Newly diagnosed, scared, and starting CyBorD treatment
Hi Kristine,
It’s good to hear that your side effects have decreased with the reduction in your Velcade dose.
Like you, I also experienced hypotension when I started taking Velcade. My hypertension has a definite postural component. My severity level is similar to yours. I am still dealing with it.
My hematologist wants me to consider taking some actions to reduce the amount of my hypotension. Apparently, postural hypotension can be treated by medications as well as with non-drug methods. I am still investigating as to whether I want to go this route, but the main point I am trying to raise is that there is help out there for hypotension. You can ask your healthcare team if they know of any therapies that might help you with your hypotension.
Best of luck,
Joe
It’s good to hear that your side effects have decreased with the reduction in your Velcade dose.
Like you, I also experienced hypotension when I started taking Velcade. My hypertension has a definite postural component. My severity level is similar to yours. I am still dealing with it.
My hematologist wants me to consider taking some actions to reduce the amount of my hypotension. Apparently, postural hypotension can be treated by medications as well as with non-drug methods. I am still investigating as to whether I want to go this route, but the main point I am trying to raise is that there is help out there for hypotension. You can ask your healthcare team if they know of any therapies that might help you with your hypotension.
Best of luck,
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Newly diagnosed, scared, and starting CyBorD treatment
My husband's oncologist chose to give his Velcade titrated in an IV rather than injection. I am not sure of his reasoning behind this. The oncology nurses said he sometimes does this for some patients. I researched it and sometimes this is the case. Good luck to you!
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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