My husband was just diagnosed with multiple myeloma on June 6th. He is a 43 year old African-American male. He had his first treatment today. The treatment is Velcade-Cytoxan-Decadron.
I'm praying that this combination works for him as his kidneys are not working well and the doctors are doing their best to keep him off dialysis to see if this combination works.
I don't know if i'm yet armed with all of the information I need concerning his lab work, but I'm hoping to get up and running on the patient portal for his doctor's office so that I can see his numbers myself and understand what they mean. After the induction treatment is underway, our next step is meeting with the consulting myeloma specialist nearest to us, which I'm guessing will be MUSC (Charleston, SC). Our current doctor did his fellowship there and appears to have a good relationship with them.
We are still quite overwhelmed with the diagnosis, treatment, and all the information we have been getting. I'm happy to have found this board and all of the support you give to each other.
Forums
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TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
Re: Newly diagnosed - first treatment today
Hello Tara:
Sorry you all need to be here (at this site), but welcome.
Sounds like you are stepping down the right road. Keeping it simple, make sure your medical team has a multiple myeloma specialist on board, who is aware of the latest and the greatest. The initial treatment your husband is on, "CyBorD", is fine. There are new recent possibilities that you all should be aware of for the future, if and when they are needed. Lots of new stuff and possible alternatives, but you need to have a multiple myeloma specialist on your team and you need to do your research. The majority of patients do have very solid responses to CyBorD, so you most likely do have some good time to come up the learning curve.
Best of luck to you. Rgds,
Sorry you all need to be here (at this site), but welcome.
Sounds like you are stepping down the right road. Keeping it simple, make sure your medical team has a multiple myeloma specialist on board, who is aware of the latest and the greatest. The initial treatment your husband is on, "CyBorD", is fine. There are new recent possibilities that you all should be aware of for the future, if and when they are needed. Lots of new stuff and possible alternatives, but you need to have a multiple myeloma specialist on your team and you need to do your research. The majority of patients do have very solid responses to CyBorD, so you most likely do have some good time to come up the learning curve.
Best of luck to you. Rgds,
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JPC - Name: JPC
Re: Newly diagnosed - first treatment today
Hello Tara,
It is very sad that your whole family is going through this ordeal at such a young age.
I was at about this stage of my treatment in mid December 2014, after having my myeloma discovered three weeks prior to that. It took a couple of weeks of tests and retests after my routine annual checkup revealed a very high level of protein in my urine test.
My treatment began on December 17, 2014. I did not know what to expect and though I had read a few articles on the Myeloma Beacon, I did not register and participate in the discussions till the weekend before my treatment began. The following should take you directly to a continuous log of my journey through the induction phase of my treatment:
"K_Shash's RVD induction therapy experience" (started Dec 13, 2014)
I started with Revlimid instead of the Cytoxan that your husband is on. Otherwise, I had the same Velcade and the dex (Decadron) as your husband.
The practical advice I received from a lot of other patients here in the forum is nothing short of amazing and was very valuable to me; to be able to avoid the Velcade rash, use Benadryl to get some sleep on the days I had to take the dex, etc. This community has helped me get through these difficult months with moral support and a lot of practical techniques that many chemo clinics and oncologists are unaware of. Please visit the discussion thread I mention above for a lot of these valuable points I learned from many others.
I hope the first few posts in the thread help you in this early days of your husband's treatment. I am sorry that my own posts are often rather wordy and lengthy and I did not spend much time to edit them.
Wish your husband and you and your family all the best.
It is very sad that your whole family is going through this ordeal at such a young age.
I was at about this stage of my treatment in mid December 2014, after having my myeloma discovered three weeks prior to that. It took a couple of weeks of tests and retests after my routine annual checkup revealed a very high level of protein in my urine test.
My treatment began on December 17, 2014. I did not know what to expect and though I had read a few articles on the Myeloma Beacon, I did not register and participate in the discussions till the weekend before my treatment began. The following should take you directly to a continuous log of my journey through the induction phase of my treatment:
"K_Shash's RVD induction therapy experience" (started Dec 13, 2014)
I started with Revlimid instead of the Cytoxan that your husband is on. Otherwise, I had the same Velcade and the dex (Decadron) as your husband.
The practical advice I received from a lot of other patients here in the forum is nothing short of amazing and was very valuable to me; to be able to avoid the Velcade rash, use Benadryl to get some sleep on the days I had to take the dex, etc. This community has helped me get through these difficult months with moral support and a lot of practical techniques that many chemo clinics and oncologists are unaware of. Please visit the discussion thread I mention above for a lot of these valuable points I learned from many others.
I hope the first few posts in the thread help you in this early days of your husband's treatment. I am sorry that my own posts are often rather wordy and lengthy and I did not spend much time to edit them.
Wish your husband and you and your family all the best.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Newly diagnosed - first treatment today
Just a heads up – your husband may become fairly irritable on dexamethasone. It does that to people. Do advise the treating cancer doctor if the irritability issues become a problem.
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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 - first treatment today
Hi Tara,
Renal failure led to my myeloma diagnosis. I started treatment, and my kidneys had recovered 3 months later.
I hope you and your husband are able to see a dietitian soon to get him on a kidney-friendly diet so his kidneys won't have to work so hard. I wasn't even aware for several weeks that I needed to avoid certain foods.
Renal failure led to my myeloma diagnosis. I started treatment, and my kidneys had recovered 3 months later.
I hope you and your husband are able to see a dietitian soon to get him on a kidney-friendly diet so his kidneys won't have to work so hard. I wasn't even aware for several weeks that I needed to avoid certain foods.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Newly diagnosed - first treatment today
Thanks everyone for the support.
cdnirene: My husband was admitted to the hospital for his chest pains and renal failure. This ultimately led us to the multiple myeloma diagnosis.
Little Monkey: I had read about the irritability and the teaching nurse mentioned this as well. Thank you.
K_shash: I will be sure to head over and read that thread now.
JPC: I read about the importance of having a specialist on the team. I've told my oncologist this and he is on board as well. I'm hoping to get that appointment soon.
cdnirene: My husband was admitted to the hospital for his chest pains and renal failure. This ultimately led us to the multiple myeloma diagnosis.
Little Monkey: I had read about the irritability and the teaching nurse mentioned this as well. Thank you.
K_shash: I will be sure to head over and read that thread now.
JPC: I read about the importance of having a specialist on the team. I've told my oncologist this and he is on board as well. I'm hoping to get that appointment soon.
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TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
Re: Newly diagnosed - first treatment today
Hello again Tara,
I understand that at the beginning, there is a lot to digest. However, I will hit you with one more issue. If you can, you want to do better than the "average" response. The average response for CyBorD is very good partial response (VGPR). You want to get to complete response (CR) or negative minimal residual disease (MRD -).
Maybe it's the case the your husband gets there with only CyBorD induction. That is sort of the best case. If not, you should look at autologous stem cell transplantation, consolidation, maintenance, or incorporating more advanced drugs. Getting an optimal response is not a guarantee; however, on average, it is a very good thing.
Good luck to you.
I understand that at the beginning, there is a lot to digest. However, I will hit you with one more issue. If you can, you want to do better than the "average" response. The average response for CyBorD is very good partial response (VGPR). You want to get to complete response (CR) or negative minimal residual disease (MRD -).
Maybe it's the case the your husband gets there with only CyBorD induction. That is sort of the best case. If not, you should look at autologous stem cell transplantation, consolidation, maintenance, or incorporating more advanced drugs. Getting an optimal response is not a guarantee; however, on average, it is a very good thing.
Good luck to you.
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JPC - Name: JPC
Re: Newly diagnosed - first treatment today
Welcome to the forum, Tara. I am sorry that you are here, but you've found a wonderful, caring, and very well informed community. I learn something new and valuable almost every day that I come here and read the postings.
I just wanted to let you know that the steps that have been taken so far to care for and treat your husband seem to be very sensible steps.
I'm also sorry if any comments that have been posted in this thread have seemed to call into question the path you've been recommended to take. Unfortunately, you do not have to search too hard to find people who feel that, even though they are not doctors and do not have any medical training whatsoever, they know enough to call into question the decisions of educated and experienced medical professionals such as those attending to your husband.
Over time, you will learn that there is debate among myeloma specialists about just about every important issue when it comes to the treatment of the disease -- even about the very nature of the disease itself.
Why some people feel it is necessary to expose people in your situation -- people who already are dealing with a whirlwind of emotions -- to such debates, or to act as if there are no such debates, just the particular opinions they believe, is beyond me. It shows a lack of sensitivity and hubris that I find difficult to fathom.
I just wanted to let you know that the steps that have been taken so far to care for and treat your husband seem to be very sensible steps.
I'm also sorry if any comments that have been posted in this thread have seemed to call into question the path you've been recommended to take. Unfortunately, you do not have to search too hard to find people who feel that, even though they are not doctors and do not have any medical training whatsoever, they know enough to call into question the decisions of educated and experienced medical professionals such as those attending to your husband.
Over time, you will learn that there is debate among myeloma specialists about just about every important issue when it comes to the treatment of the disease -- even about the very nature of the disease itself.
Why some people feel it is necessary to expose people in your situation -- people who already are dealing with a whirlwind of emotions -- to such debates, or to act as if there are no such debates, just the particular opinions they believe, is beyond me. It shows a lack of sensitivity and hubris that I find difficult to fathom.
Re: Newly diagnosed - first treatment today
Tara,
My husband was diagnosed at age 58 in December of 2015. He too was having chest pain and his kidneys were severely compromised. The reason for doing Cytoxan (cyclophosphamide) instead of Revlimid is it is easier on he kidneys. My husband also had CyBorD. He responded very well and within a few treatments his kidneys were well again and his bone pain gone. He is in the middle of his stem cell transplant and you can read about it if you like under the Treatments & Side Effects section of the forum under "Dear hubby's stem cell transplant saga."
Good luck and best wishes. You have found a great place. I truly believe knowledge is power. Arm yourself with it.
My husband was diagnosed at age 58 in December of 2015. He too was having chest pain and his kidneys were severely compromised. The reason for doing Cytoxan (cyclophosphamide) instead of Revlimid is it is easier on he kidneys. My husband also had CyBorD. He responded very well and within a few treatments his kidneys were well again and his bone pain gone. He is in the middle of his stem cell transplant and you can read about it if you like under the Treatments & Side Effects section of the forum under "Dear hubby's stem cell transplant saga."
Good luck and best wishes. You have found a great place. I truly believe knowledge is power. Arm yourself with it.
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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 - first treatment today
Thank you, Dogmom. I was just about to write:
Mark
The reason for doing Cytoxan (cyclophosphamide) instead of Revlimid is it is easier on he kidneys.
Mark
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Mark11
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