My 47 yo, newly diagnosed husband will likely be starting Revlimid/Velcade/Dex in the next 6 weeks and I'm overloading on all the information I can find to be prepared.
After pouring through the mountains of "stuff", I'm thinking the most helpful thing would be to ask those veterans (patients and caregivers) who've been through this drug regimen 2 simple questions:
1. What do you wish you'd known before you started treatment?
2. Any practical suggestions on how to be prepared?
I'm looking for the "real-life" answers you don't find in the formal medical literature. The "been-there-done-that" kind advice!
I'm looking forward to your responses!
Thanks in advance,
Beth
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jonesgangmom - Name: Beth
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: Dec. 2010
- Age at diagnosis: 47
Re: What do you wish you'd known?
Beth, welcome to the Beacon - not a club we wish anyone has to join - but we are all thankful for not only the knowledge but friendships that are found here.
Your questions:
1) What I would like to have known before treatment:
that Rex would get the rash from the Velcade/Dex treatment -- we did get a prescription - ointment and oral - but he had to deal with for about a week;
the physical toll that chemo takes on the patient - he was exhausted;
weight loss is pretty much a given - so no dieting for weight loss;
treatments and just knowing you have cancer affects the family emotionally and physically.
As a caregiver, take care of yourself - this is no time for you to get sick.
He will need you more than either of you can imagine (I tend to be overprotective but have learned to back off now that he feels better).
Make sure you only read the most current information on the internet -- realize that stats prior to the novel therapies are very out of date!
2) You have already started the preparation by trying to gain more knowledge
appetite will be affected so try to have things on hand that are nourishing -- tastes will be different - water tastes like metal - food doesn't taste the same;
keep copies of everything - notebook with labs, daily log of how he feels - what he eats - blood pressure if that's an issue - medications - because you will be asked lots of questions during clinic visits;
get to know your treatment team - they can be priceless.
3) You didn't ask - but just know that the first few months and various treatments may be awful - but as time goes on you realize that you can make it through each and every issue that comes up -- prayer does amazing things! Oh - and when docs make suggestions on treatment plan, ask what they would do if it were them or their loved one.
We wish you and your husband the very best.
Rex and Kay
Your questions:
1) What I would like to have known before treatment:
that Rex would get the rash from the Velcade/Dex treatment -- we did get a prescription - ointment and oral - but he had to deal with for about a week;
the physical toll that chemo takes on the patient - he was exhausted;
weight loss is pretty much a given - so no dieting for weight loss;
treatments and just knowing you have cancer affects the family emotionally and physically.
As a caregiver, take care of yourself - this is no time for you to get sick.
He will need you more than either of you can imagine (I tend to be overprotective but have learned to back off now that he feels better).
Make sure you only read the most current information on the internet -- realize that stats prior to the novel therapies are very out of date!
2) You have already started the preparation by trying to gain more knowledge
appetite will be affected so try to have things on hand that are nourishing -- tastes will be different - water tastes like metal - food doesn't taste the same;
keep copies of everything - notebook with labs, daily log of how he feels - what he eats - blood pressure if that's an issue - medications - because you will be asked lots of questions during clinic visits;
get to know your treatment team - they can be priceless.
3) You didn't ask - but just know that the first few months and various treatments may be awful - but as time goes on you realize that you can make it through each and every issue that comes up -- prayer does amazing things! Oh - and when docs make suggestions on treatment plan, ask what they would do if it were them or their loved one.
We wish you and your husband the very best.
Rex and Kay
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: What do you wish you'd known?
Hi Beth,
My 53 year old boyfriend, EJ, was diagnosed with multiple myeloma in September, 2010. Like you, I've been reading absolutely everything I can get my hands on trying to understand this beast, trying to understand what lies ahead, and trying to figure out what my role as caretaker might be. I'm not much further down this road than you are, but I can share what I've learned so far. I may not say much more than you already know but sometimes just having your thoughts confirmed can be positive.
Given your husband's age he might be a good candidate for stem cell transplant. If you haven't discussed this option with your doc you might want to. No need to make a decision just yet, but if they know you are considering it they won't prescribe certain drugs such as melphalan which could harm stem cells. Also be cautious of radiation treatments.
In this first year after diagnosis, I expect three things to happen:
1. Induction Therapy, which I understand to be your first therapy. EJ has just completed four cycles of Velcade/Dex. He has been able to handle it beautifully, with very few side effects. The Dex gets him pretty wound up, but he hasn’t had any neuropathy from the Velcade. He’s also getting Zometta once a month. The first month was tough but after that he’s not had much trouble.
2. He’ll make a decision about SCT. From what I’ve gathered there is a bit of a discussion in the multiple myeloma community – among both doctors and patients – about both the necessity and timing of stem cell transplants. If your husband is thinking about having a transplant he may have his stem cells harvested sometime after the fourth round of his induction therapy. EJ is leaning toward having a SCT early so we are just now starting down this path. (As I write this I realize I don’t know what step 2 is if you are not planning a SCT, sorry.)
3. He will start on some sort of maintenance. The goal of both the Induction Therapy and the SCT is to achieve a good remission. Maintenance may help prolong that remission. There are some questions about the benefits of maintenance, and there is much controversy at the moment about one of the drugs used for maintenance, but we plan to start to explore this option with the doctor as we discuss the SCT.
One of the other decisions EJ has had to make since his diagnosis is how “aggressive” he wants to be with his treatment. When he was first diagnosed we did not have the option of going to one of the major research centers so he began his treatment with one of the local hematology/oncology groups. Now that things have settled down a bit, and we’ve had an opportunity to really research multiple myeloma, we are going to go to one of these centers for a second option. I’m hoping they will agree to take him on as a patient, but that he can still get his treatments locally.
I hope that helps a bit. Best of luck to you and your husband.
Lyn
My 53 year old boyfriend, EJ, was diagnosed with multiple myeloma in September, 2010. Like you, I've been reading absolutely everything I can get my hands on trying to understand this beast, trying to understand what lies ahead, and trying to figure out what my role as caretaker might be. I'm not much further down this road than you are, but I can share what I've learned so far. I may not say much more than you already know but sometimes just having your thoughts confirmed can be positive.
Given your husband's age he might be a good candidate for stem cell transplant. If you haven't discussed this option with your doc you might want to. No need to make a decision just yet, but if they know you are considering it they won't prescribe certain drugs such as melphalan which could harm stem cells. Also be cautious of radiation treatments.
In this first year after diagnosis, I expect three things to happen:
1. Induction Therapy, which I understand to be your first therapy. EJ has just completed four cycles of Velcade/Dex. He has been able to handle it beautifully, with very few side effects. The Dex gets him pretty wound up, but he hasn’t had any neuropathy from the Velcade. He’s also getting Zometta once a month. The first month was tough but after that he’s not had much trouble.
2. He’ll make a decision about SCT. From what I’ve gathered there is a bit of a discussion in the multiple myeloma community – among both doctors and patients – about both the necessity and timing of stem cell transplants. If your husband is thinking about having a transplant he may have his stem cells harvested sometime after the fourth round of his induction therapy. EJ is leaning toward having a SCT early so we are just now starting down this path. (As I write this I realize I don’t know what step 2 is if you are not planning a SCT, sorry.)
3. He will start on some sort of maintenance. The goal of both the Induction Therapy and the SCT is to achieve a good remission. Maintenance may help prolong that remission. There are some questions about the benefits of maintenance, and there is much controversy at the moment about one of the drugs used for maintenance, but we plan to start to explore this option with the doctor as we discuss the SCT.
One of the other decisions EJ has had to make since his diagnosis is how “aggressive” he wants to be with his treatment. When he was first diagnosed we did not have the option of going to one of the major research centers so he began his treatment with one of the local hematology/oncology groups. Now that things have settled down a bit, and we’ve had an opportunity to really research multiple myeloma, we are going to go to one of these centers for a second option. I’m hoping they will agree to take him on as a patient, but that he can still get his treatments locally.
I hope that helps a bit. Best of luck to you and your husband.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: What do you wish you'd known?
Thanks for the responses! It's so helpful to get my head out of medical journals and industry literature and just hear from real people.
Thanks for taking time to reply!
Beth
Thanks for taking time to reply!
Beth
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jonesgangmom - Name: Beth
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: Dec. 2010
- Age at diagnosis: 47
Re: What do you wish you'd known?
Tthe first week of treatment would be the hardest due to highs and then by the end of the week the lows. My Dr said when the lows started that my husband should reassure me"" it is the medication causing it. The second week of the low was better with the help of anti anxiety meds and taking a sleeping pill at night. It got easier and easier as treatment progressed. The highs weren't bad I did a lot of cleaning had super amount of energy. would take the dex at night at the
Dr's. suggestion I would take a sleeping pill then my husband waited till i was asleep wake me up and give me my medication it worked like a charm. My Dr. warn me it would be a roller coaster ride well that was a good warning but it was more like being on a viper ride. take care be very good to yourself.
Dr's. suggestion I would take a sleeping pill then my husband waited till i was asleep wake me up and give me my medication it worked like a charm. My Dr. warn me it would be a roller coaster ride well that was a good warning but it was more like being on a viper ride. take care be very good to yourself.
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mary louise
Re: What do you wish you'd known?
Hi Beth,
I'm 51 and was diagnosed this past December, and started a clinical trial with Revlimid/Velcade/Dex in January, so it sounds like I'm in a similar place to your husband, at least in terms of treatment. I'm also getting Zometa once every 3 weeks. One thing I've already learned is that this disease affects everyone differently, and how a person might feel during treatment can vary depending on the other issues they might be dealing with. Just something to bear in mind...
In terms of what do I wish I'd known, I guess my biggest anxiety before starting the trial was how I would respond to all these new drugs (I used to be someone who barely took painkillers, sigh...) so...
I've had two cycles of the drugs so far and my experience has been OK. I've had some of the side effects your hear about with Velcade (tingling in hands/feet, bone aches) but fortunately they have been mild and have just come and gone. The major things that have bothered me have been:
--Sleeplessness--this is from the dexamethasone. My doctor told me to take it in the AM, but I have to say I don't think that really helps much once it's in your system. I found that the first day I took it in each cycle I had a lot of energy and got a lot done but as the days went on, I also found myself waking up in the middle of the night and not being able to get back to sleep. So then in the daytime I would be really groggy...my doctors have prescribed a few different things including Ambien, which I haven't yet tried and Ativan (worked fairly well but made me feel sort of "out of it" for about half the following day). Still trying to find the best solution but fortunately I work from home and can take naps if necessary! So your husband may need to prepare himself for some tired days...fortunately, I've found that by the time I reach my "off" weeks in the cycle I can catch up on sleep a bit.
--Zometa--the first time I had it I felt a kind of tightness in my chest for about 24 hours afterwards, as if it was an effort to take a full breath (similar to asthma symptoms.) The nurse said about 30% of people get this after their first treatment. It did go away and hasn't returned with subsequent treatments. I just mention this because my doctor didn't think I would have any side effects to speak of and then this did come up, and I was a bit concerned.
Otherwise, I think the most difficult things I've been dealing with have been just getting used to this new reality, the huge number of doctor's visits, the constant flood of information, keeping track of all the medications. If your husband's doctor/nurses don't give him some kind of calendar each cycle to help keep track of meds and appointments, I would definitely advise making one on your own. My nurse does one for every cycle and it is a huge help.
Oh, and the constant blood work...I never had a problem with being "stuck" until all this happened. Now, between the blood work and the Velcade I am starting to get anxious every time they look for a good vein (and I was always told I had "great veins.") I'm getting an apheresis catheter put in this week for the harvest, and we're looking into getting it converted into a port, which would make subsequent IVs and blood work much easier. Something else to consider...
I would also just add that at least for me, I've been really cautious about how much I read on-line and where I go for information. You're right, there is an overwhelming amount of stuff out there, and as I said, not all of it is applicable for everyone. You need to have a doctor you trust, first of all, and then if you do go looking at other sources of information, make sure it's from a reliable, up-to-date place (such as the MMRF).
I wish you and your husband all the best!
Karen
I'm 51 and was diagnosed this past December, and started a clinical trial with Revlimid/Velcade/Dex in January, so it sounds like I'm in a similar place to your husband, at least in terms of treatment. I'm also getting Zometa once every 3 weeks. One thing I've already learned is that this disease affects everyone differently, and how a person might feel during treatment can vary depending on the other issues they might be dealing with. Just something to bear in mind...
In terms of what do I wish I'd known, I guess my biggest anxiety before starting the trial was how I would respond to all these new drugs (I used to be someone who barely took painkillers, sigh...) so...
I've had two cycles of the drugs so far and my experience has been OK. I've had some of the side effects your hear about with Velcade (tingling in hands/feet, bone aches) but fortunately they have been mild and have just come and gone. The major things that have bothered me have been:
--Sleeplessness--this is from the dexamethasone. My doctor told me to take it in the AM, but I have to say I don't think that really helps much once it's in your system. I found that the first day I took it in each cycle I had a lot of energy and got a lot done
but as the days went on, I also found myself waking up in the middle of the night and not being able to get back to sleep. So then in the daytime I would be really groggy...my doctors have prescribed a few different things including Ambien, which I haven't yet tried and Ativan (worked fairly well but made me feel sort of "out of it" for about half the following day). Still trying to find the best solution but fortunately I work from home and can take naps if necessary! So your husband may need to prepare himself for some tired days...fortunately, I've found that by the time I reach my "off" weeks in the cycle I can catch up on sleep a bit.--Zometa--the first time I had it I felt a kind of tightness in my chest for about 24 hours afterwards, as if it was an effort to take a full breath (similar to asthma symptoms.) The nurse said about 30% of people get this after their first treatment. It did go away and hasn't returned with subsequent treatments. I just mention this because my doctor didn't think I would have any side effects to speak of and then this did come up, and I was a bit concerned.
Otherwise, I think the most difficult things I've been dealing with have been just getting used to this new reality, the huge number of doctor's visits, the constant flood of information, keeping track of all the medications. If your husband's doctor/nurses don't give him some kind of calendar each cycle to help keep track of meds and appointments, I would definitely advise making one on your own. My nurse does one for every cycle and it is a huge help.
Oh, and the constant blood work...I never had a problem with being "stuck" until all this happened. Now, between the blood work and the Velcade I am starting to get anxious every time they look for a good vein (and I was always told I had "great veins.") I'm getting an apheresis catheter put in this week for the harvest, and we're looking into getting it converted into a port, which would make subsequent IVs and blood work much easier. Something else to consider...
I would also just add that at least for me, I've been really cautious about how much I read on-line and where I go for information. You're right, there is an overwhelming amount of stuff out there, and as I said, not all of it is applicable for everyone. You need to have a doctor you trust, first of all, and then if you do go looking at other sources of information, make sure it's from a reliable, up-to-date place (such as the MMRF).
I wish you and your husband all the best!
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: What do you wish you'd known?
Hi Beth and anyone else who is taking Velcade,
My husband, Tom, is on VTD-PACE the "V" is Velcade. A new oncologist told us that vitamin C can make the Velcade ineffective so he can't have any vitamin C with in 24 hours before or having having Velcade.
Tom was on Velcade last August - October and it became ineffective. We were not told that he should have vitamin C with Velcade. We're wondering if that's why it became ineffective.
I did find a report from 2009 that states this finding with multiple myeloma patients.
The VTD-PACE really knocked my husband's counts down. His white blood count is now .1 and he has some kind of infection. He is hospitalized until his fever goes away and his white blood count improves.
Praying for a cure for multiple myeloma!!!
Barb
My husband, Tom, is on VTD-PACE the "V" is Velcade. A new oncologist told us that vitamin C can make the Velcade ineffective so he can't have any vitamin C with in 24 hours before or having having Velcade.
Tom was on Velcade last August - October and it became ineffective. We were not told that he should have vitamin C with Velcade. We're wondering if that's why it became ineffective.
I did find a report from 2009 that states this finding with multiple myeloma patients.
The VTD-PACE really knocked my husband's counts down. His white blood count is now .1 and he has some kind of infection. He is hospitalized until his fever goes away and his white blood count improves.
Praying for a cure for multiple myeloma!!!
Barb
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BarbTonn - Name: BarbT
- Who do you know with myeloma?: husband, Tom
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 56
Re: What do you wish you'd known?
Yes, we will pray for him and a cure for our multiple myeloma. I just attended a seminar for patients and caregivers in Boca Raton Fl. One thing I learned that surprised me is that you SHOULD NOT drink green tea. This will nullify the good effect of Velcade. Many people think it is so good for you but one glass after your Velcade will stop any good you will get from it. This they told us there. Makes you wonder what else we commonly do that is bad.
Red wine is shown to slow down the splitting ofr the multiple myeloma cells. I have two studies from overseas, they are just now studying this here. it is the Resveratrol and I take a supplement.
Hugh
Red wine is shown to slow down the splitting ofr the multiple myeloma cells. I have two studies from overseas, they are just now studying this here. it is the Resveratrol and I take a supplement.
Hugh
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Anonymous
Re: What do you wish you'd known?
FIVE YEAR SURVIVOR.... There is life after the crazy first regimen!!!!
Fellow Brothers and Sisters with this Nasty Disease:
Hang in there! There is good life once you round that corner :
Initially.... Numb.....I'm going to die from Cancer..... I didn't want to fall asleep in fear of not waking!!!
Then it settles into the 'Surviving the Treatment' Possibly phase 3 is the Stem Cell Transplant...
It's OK... 19 days of hell but OK....
Finally you get to the Reality of: Hey I'm Living With This Stuff!!! And Please, along the way.... enjoy every hour... every laugh. Seek out family member and friends and share fun and laughs.
This entire disease is summed up by this fact: Every day and every step we take within God's plan ..... is buying us time. It's still incurable...... but don't believe statistics...... death is not around the corner. But everything is all about extending out our time line....
Initial: age 48 Feb 2006 to Dec 2006
Drugs / Radiation / IV's
(10 radiation treatments, 31 straight IV Zometa or Aredia treatemnts thru time... Dec 2006 Stem Cell Transplant...) 2yrs later on the Rev and Dex. I've had the side effects: Broken Back, Blood Clots, Osteo Necrosis of the Jaw from the IV's. I've seen it and been there....lol Life is still good!!!!
Fellow Brothers and Sisters with this Nasty Disease:
Hang in there! There is good life once you round that corner :
Initially.... Numb.....I'm going to die from Cancer..... I didn't want to fall asleep in fear of not waking!!!
Then it settles into the 'Surviving the Treatment' Possibly phase 3 is the Stem Cell Transplant...
It's OK... 19 days of hell but OK....
Finally you get to the Reality of: Hey I'm Living With This Stuff!!! And Please, along the way.... enjoy every hour... every laugh. Seek out family member and friends and share fun and laughs.
This entire disease is summed up by this fact: Every day and every step we take within God's plan ..... is buying us time. It's still incurable...... but don't believe statistics...... death is not around the corner. But everything is all about extending out our time line....
Initial: age 48 Feb 2006 to Dec 2006
Drugs / Radiation / IV's
(10 radiation treatments, 31 straight IV Zometa or Aredia treatemnts thru time... Dec 2006 Stem Cell Transplant...) 2yrs later on the Rev and Dex. I've had the side effects: Broken Back, Blood Clots, Osteo Necrosis of the Jaw from the IV's. I've seen it and been there....lol Life is still good!!!!
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miski57
Re: What do you wish you'd known?
Very important to accept early in this disease process:
When you are feeling 'good' enjoy it.
Someday, when your body won't allow you to do the things that you took for granted....... You and your caregiver / wife / family will say:
Remember the good times when we could.....
These are those good times now!!!!
You will 'redefine what is normal in your lives' every few months......and it will change....
Dex is the hardest part of the treatment package to deal with on a consistent basis...... Take it late at night and go to sleep within 30 minutes... When you're very tired............ Alert your spouse and significant others.... family etc.... As to when you are taking the dex so they are warned to help you... and to avoid silly conflict with you.... as you are not yourself for 48 hours ....lol good luck
When you are feeling 'good' enjoy it.
Someday, when your body won't allow you to do the things that you took for granted....... You and your caregiver / wife / family will say:
Remember the good times when we could.....
These are those good times now!!!!
You will 'redefine what is normal in your lives' every few months......and it will change....
Dex is the hardest part of the treatment package to deal with on a consistent basis...... Take it late at night and go to sleep within 30 minutes... When you're very tired............ Alert your spouse and significant others.... family etc.... As to when you are taking the dex so they are warned to help you... and to avoid silly conflict with you.... as you are not yourself for 48 hours ....lol good luck
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miski57
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