My Dad is 74 and starting treatment on this combination. Dex is 20 MG two days per week, with 15 MG Revlimid and Velcade via injection 2 days per week in 2 week cycles (hope I got that right). He lives alone, my mom passed away a year ago. I live about 30 mins away and I have concerns about him being home alone during treatment. He is stubborn and while he likes me to go to appointments with him, he is not very open to staying with us while he begins this battle.
Question: Those of you who have done this or cared for others on similar treatment plans - should you be alone? If not, for how long after or treatment ... or at all?
He is early stage myeloma (only in the blood right now) and for 74 in fair health other than this issue.
I really appreciate any feedback. I want to take care of my Dad, but not smother him either.
Thank you!
A
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Re: Dex with Revlimid and Velcade side effects if you live a
Hello dear,
I have taken Revlimid on its own and I developed a rash that covered most of my legs and part of my stomach, it was a little uncomfortable, but I asked the doctor if I could take something else instead and he is now giving me Velcade and Decadron [dexamethasone] together twice a month in an injection. I have tolerated both without barely any side effects.
I suggest that you or someone else stays with your dad for at least a week to see if he develops any side effects.
I have taken Revlimid on its own and I developed a rash that covered most of my legs and part of my stomach, it was a little uncomfortable, but I asked the doctor if I could take something else instead and he is now giving me Velcade and Decadron [dexamethasone] together twice a month in an injection. I have tolerated both without barely any side effects.
I suggest that you or someone else stays with your dad for at least a week to see if he develops any side effects.
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Iriszam - Name: Iris
- Who do you know with myeloma?: Jim
- When were you/they diagnosed?: February 3rd, 2011
- Age at diagnosis: 42
Re: Dex with Revlimid and Velcade side effects if you live a
Hi Daughter for Dad,
I was on Revlimid, Dex, and Velcade for cycles 2-6 of induction (cycle 1 was cytoxan, Rev, Dex because the Revlimid hadn't arrived yet). I am back on the same thing now for consolidation after my stem cell transplant.
The worst side effect that I had in the beginning was constipation that made my whole body feel horrible. This was fixed by taking Miralax everyday and two Senna Plus pills every night. It's a tricky balance because everyone's body is different and sometimes the opposite problem occurs.
Before your dad starts with the Velcade, he should ask the people administering it if they believe he should start taking something like Miralax because it takes about three days to work. I could have saved myself some suffering if I had done this at the beginning. Now I have a system down and know how to prevent most problems.
The other side effect that I had seemed to happen to me only during some cycles and was worse after the second dose of Velcade each week. I couldn't fully taste all of my food, my legs really felt uncomfortable, and I was very tired. I'd get my second Velcade shot on Thursdays, I was fine on Friday and then by noon on Saturday I'd feel all of these effects. By Monday I was pretty good again.
For some people, the Dex causes sleep problems. For me, it's been minimal but I keep Tylenol PM on hand and just one before bed on the day after I get my Dex helps me sleep. It's really hard to know how the drugs will affect each individual but the good news is that they generally cause far fewer problems than chemo for other types of cancer.
Best wishes for you and your dad.
I was on Revlimid, Dex, and Velcade for cycles 2-6 of induction (cycle 1 was cytoxan, Rev, Dex because the Revlimid hadn't arrived yet). I am back on the same thing now for consolidation after my stem cell transplant.
The worst side effect that I had in the beginning was constipation that made my whole body feel horrible. This was fixed by taking Miralax everyday and two Senna Plus pills every night. It's a tricky balance because everyone's body is different and sometimes the opposite problem occurs.
Before your dad starts with the Velcade, he should ask the people administering it if they believe he should start taking something like Miralax because it takes about three days to work. I could have saved myself some suffering if I had done this at the beginning. Now I have a system down and know how to prevent most problems.
The other side effect that I had seemed to happen to me only during some cycles and was worse after the second dose of Velcade each week. I couldn't fully taste all of my food, my legs really felt uncomfortable, and I was very tired. I'd get my second Velcade shot on Thursdays, I was fine on Friday and then by noon on Saturday I'd feel all of these effects. By Monday I was pretty good again.
For some people, the Dex causes sleep problems. For me, it's been minimal but I keep Tylenol PM on hand and just one before bed on the day after I get my Dex helps me sleep. It's really hard to know how the drugs will affect each individual but the good news is that they generally cause far fewer problems than chemo for other types of cancer.
Best wishes for you and your dad.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Dex with Revlimid and Velcade side effects if you live a
Thank you so much for taking time to reply, I really appreciate this feedback Joy and Irsizam! I wish you both the best of luck with your treatments and battle!
Anyone else who has information to share, please do! The doctor he has is great, but I think the people living with this know best what the reality of the treatment is. He starts treatment next Tuesday if the Revlimid arrives in time.
Thanks again!
Anyone else who has information to share, please do! The doctor he has is great, but I think the people living with this know best what the reality of the treatment is. He starts treatment next Tuesday if the Revlimid arrives in time.
Thanks again!
Re: Dex with Revlimid and Velcade side effects if you live a
I was on Velcade, Revlimid and dex for about 5 cycles (20 weeks) and I live alone. I experienced some of the usual side effects but I never felt like I needed anyone to help me or care for me. My side effects were generally minor but everyone is different. Also, my dosages and schedule was different than your father's.
Some of the side effects I had were sleepiness at night from the Revlimid, constipation after the Velcade/dex days, slight rash from time to time, some days more tired probably due to the dex, some days my mind wasn't as clear, frequent urination (Revlimid), didn't sleep as much, heartburn (occasional and minor), and peripheral neuropathy in my feet.
I probably had a few others that I can't think of right now, but none of those side effects ever kept me from having a pretty normal life. I was able to continue working out 6-7 days per week, although I probably didn't push myself as much as I did before.
I'd suggest seeing how your dad responds to see what his side effects are. Hopefully they'll be fairly minor like mine were and if, that's the case, he's probably fine by himself. Having said that, I've read that other people have side effects much worse than mine. So you'll just have to see how he responds.
Some of the side effects I had were sleepiness at night from the Revlimid, constipation after the Velcade/dex days, slight rash from time to time, some days more tired probably due to the dex, some days my mind wasn't as clear, frequent urination (Revlimid), didn't sleep as much, heartburn (occasional and minor), and peripheral neuropathy in my feet.
I probably had a few others that I can't think of right now, but none of those side effects ever kept me from having a pretty normal life. I was able to continue working out 6-7 days per week, although I probably didn't push myself as much as I did before.
I'd suggest seeing how your dad responds to see what his side effects are. Hopefully they'll be fairly minor like mine were and if, that's the case, he's probably fine by himself. Having said that, I've read that other people have side effects much worse than mine. So you'll just have to see how he responds.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Dex with Revlimid and Velcade side effects if you live a
My mom tolerated the Revlimid relatively well, but it was a different story with Velcade. At first, she experienced little to no side-effects, but by about 15 months into maintenance therapy, she was nauseous for half of the week, with quite a bit of vomiting and loss of appetite.
I do think that, while you don't want to smother your father, it will be very helpful to have someone check on him daily in person. At some point, it might be good to have him stay with you, even if just for part of the week.
I do think that, while you don't want to smother your father, it will be very helpful to have someone check on him daily in person. At some point, it might be good to have him stay with you, even if just for part of the week.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Dex with Revlimid and Velcade side effects if you live a
I suspect that your biggest concern might be nourishment. The whole process is tiring and living alone he might be tempted to slight himself that way.
As another older patient, I was 70 when I started my journey, that is what comes to mind. You might want to see if he would supplement with Boost or Ensure. I relied heavily on Boost because it was easy to use as a midday meal or as a healthy supplement if I was hungry, but not feeling up to fixing anything.
As another older patient, I was 70 when I started my journey, that is what comes to mind. You might want to see if he would supplement with Boost or Ensure. I relied heavily on Boost because it was easy to use as a midday meal or as a healthy supplement if I was hungry, but not feeling up to fixing anything.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Dex with Revlimid and Velcade side effects if you live a
Thank you all for taking time to share your experience and thoughts.
I really appreciate the information on the dietary issue. After reading your experiences I did more research and I do plan to have Boost/Ensure on hand for him and ice cream. I am thinking I can make him milk shakes or he can just drink the boost straight if need be. I have also read a lot of flavor works with some, so I will be prepared to spice things up if that works too. Lucky for us, we live in Texas, so if he craves a lot of flavor we have lots of great Tex Mex options nearby!
I think what I am figuring out is this is a very different experience for each individual person. Some have mild side effects while others are hit much harder. He starts treatment this week, so I guess we will know pretty soon where he falls on the spectrum.
Thank you again. Best of luck to each of you in your fight against this!
I really appreciate the information on the dietary issue. After reading your experiences I did more research and I do plan to have Boost/Ensure on hand for him and ice cream. I am thinking I can make him milk shakes or he can just drink the boost straight if need be. I have also read a lot of flavor works with some, so I will be prepared to spice things up if that works too. Lucky for us, we live in Texas, so if he craves a lot of flavor we have lots of great Tex Mex options nearby!
I think what I am figuring out is this is a very different experience for each individual person. Some have mild side effects while others are hit much harder. He starts treatment this week, so I guess we will know pretty soon where he falls on the spectrum.
Thank you again. Best of luck to each of you in your fight against this!
Re: Dex with Revlimid and Velcade side effects if you live a
Wayne K wrote:
"I suspect that your biggest concern might be nourishment. The whole process is tiring and living alone he might be tempted to slight himself that way.
As another older patient, I was 70 when I started my journey, that is what comes to mind. You might want to see if he would supplement with Boost or Ensure. I relied heavily on Boost because it was easy to use as a midday meal or as a healthy supplement if I was hungry, but not feeling up to fixing anything."
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Good point. I haven't had this particular regimen, but for me fatigue and low mood were side effects of Revlimid. So if I was alone - fortunately I was not - I might not have had the motivation to fix myself decent meals. Maybe stock him up on better frozen foods or bring over a big batch of spaghetti and meatballs that can stay in the freezer.
The digestive stuff can go either way, or both. My default is diarrhea, which over time I learned to control with over-the-counter loperamide (Immodium). But there were many weeks when I had to alternate between that and Miralax as I bounced from diarrhea to constipation.
Someone mentioned a rash, and that can get very serious, so keep any eye on it. I can't tolerate more than 5mg of Revlimid, but others are fine at higher doses.
"I suspect that your biggest concern might be nourishment. The whole process is tiring and living alone he might be tempted to slight himself that way.
As another older patient, I was 70 when I started my journey, that is what comes to mind. You might want to see if he would supplement with Boost or Ensure. I relied heavily on Boost because it was easy to use as a midday meal or as a healthy supplement if I was hungry, but not feeling up to fixing anything."
- - - - -
Good point. I haven't had this particular regimen, but for me fatigue and low mood were side effects of Revlimid. So if I was alone - fortunately I was not - I might not have had the motivation to fix myself decent meals. Maybe stock him up on better frozen foods or bring over a big batch of spaghetti and meatballs that can stay in the freezer.
The digestive stuff can go either way, or both. My default is diarrhea, which over time I learned to control with over-the-counter loperamide (Immodium). But there were many weeks when I had to alternate between that and Miralax as I bounced from diarrhea to constipation.
Someone mentioned a rash, and that can get very serious, so keep any eye on it. I can't tolerate more than 5mg of Revlimid, but others are fine at higher doses.
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Ron - Name: Ron
- When were you/they diagnosed?: Nov. 2010
- Age at diagnosis: 63
Re: Dex with Revlimid and Velcade side effects if you live a
It's been nearly a month since the original post but my husband just finished cycle 1 with Rev/Vel/Dex and had some severe side effects. He also was taking morphine ER and IR for back pain.
Last Sat, day after his last 2x's/week injection, (3 week cycle-2 weeks drugs, 1 week off) he had severe constipation and vomiting along with breakthrough back pain. On Monday his oncologist sent us to our local ER to be evaluated for a blockage. After X-rays, blood work, and abdominal ct scan, no blockage, and morphine in his IV for pain,, they treated him with a powerful enema, which worked but he was still vomiting. He lost his appetite, didn't eat, and slept a lot through Wednesday.
Yesterday, he rallied and today he ate very well and even walked on the treadmill. Now he is taking Colace and Senna up to 4/day to prevent the severe constipation.
His hema/oncologist is saying the morphine caused this. But after reading the previous comments, I'm not convinced, it could be the RVD.
My suggestion for Daughter for Dad is a preventative regimen for constipation under his Doctors direction to get ahead of possible constipation issues.
Last Sat, day after his last 2x's/week injection, (3 week cycle-2 weeks drugs, 1 week off) he had severe constipation and vomiting along with breakthrough back pain. On Monday his oncologist sent us to our local ER to be evaluated for a blockage. After X-rays, blood work, and abdominal ct scan, no blockage, and morphine in his IV for pain,, they treated him with a powerful enema, which worked but he was still vomiting. He lost his appetite, didn't eat, and slept a lot through Wednesday.
Yesterday, he rallied and today he ate very well and even walked on the treadmill. Now he is taking Colace and Senna up to 4/day to prevent the severe constipation.
His hema/oncologist is saying the morphine caused this. But after reading the previous comments, I'm not convinced, it could be the RVD.
My suggestion for Daughter for Dad is a preventative regimen for constipation under his Doctors direction to get ahead of possible constipation issues.
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