1. < Blood Cancers & Disorders

Myeloma: Revlimid and steroids: How quickly do side effects subside?

Posted by marypluzes @marypluzes, Sep 25, 2022

My Mother has just finished week 2 of her first 3 week course of Ravlidamid, steroids, anti gout drug and ant-acid drug.
Week one wasn't too bad but at end of this week, she is extremely tired, shaking badly, just got over sore throat, has a bad cough, loss of appetite and insomnia.
She has one more week to go, then a week off from just the main revlidamide drug.
My question is - generally how quickly do the side effects stop in between cycles?
Thanks in advance

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callie28 | @callie28 | Nov 24, 2022
In reply to @dkandalec "I’m doing remarkably well. All of my blood counts have rebounded and I was home after..." + (show)
@dkandalec

I’m doing remarkably well. All of my blood counts have rebounded and I was home after 14 days in the hospital! I have been walking 1 to 2 miles a day to help with energy levels. Still have some afternoon fatigue and doing my best to get my appetite back.
Overall I am blessed to have very little side effects and recovering well after 28 days.

Thanks so much for checking in on me and would be glad to assist anyone with any questions or to give any insights on my stem cell journey.
Have a blessed thanksgiving and holiday season. I got this!

Jump to this post

My husband had his stem cell transplant yesterday Nov. 23 rd. Having a hard time getting the nausea under control. Have tried lots of meds.. Any recommendations on any particular meds working the best? Thanks

REPLY
1 reply
dkandalec | @dkandalec | Nov 25, 2022

Post transplant I used Compazine 10 mg. worked the best. Side effect was drowsiness. I also used Zofran and continue to use this to control nausea now that I’m home. Regular over the counter antacids were also used while in the hospital.
The key was to take them prior to eating any food or protein drink.
My care team said there were other options available if these did not work.

I will say that these did assist but did not totally remove the nausea /reflux feeling I had during the toughest days 6-10 post transplant / chemo. It also helped by eating small portion, bland type foods every 3-4 hours vs. larger 3 meals. Try crackers, Lara bars, toast, rice, protein drinks (ensure). Believe me, nothing tasted good and had to force myself to try and eat. This was one of the toughest parts of the recovery.

On a positive note, it does get better gradually.I hope your husband finds a medication and diet that works best for him. Get through this next week and hopefully he feels some relief. I am pulling for him. Much positive vibes being sent his way.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 25, 2022
In reply to @caroljonae "I new to this connect web site. I have multiple myeloma, osteoporosis and 4 fractures in..." + (show)
@caroljonae

I new to this connect web site. I have multiple myeloma, osteoporosis and 4 fractures in my back that aren’t really as painful as when first discovered. (One collapsed) I have one issue that I don’t have an answer to. I take 5 Dexamethasone at 5:30am on my Wednesday chemo injection day. Last Wednesday evening I started burning when I urinated. I drank a lot of water. Went to bed but couldn’t sleep. It was still burning. Tried many times to urinate because it kept burning. Only trickled. Finally at 4:00am, I found my OTC AZO, took 2 and I finally fell asleep. I have E Coli I was told and am on Sulfamethoxazole-ole-tmp DDs for 5 days. But yesterday the same thing happened at night. Must of gone to bathroom 6 times, but it still burnt. Took otc AZO again, but just weakened the burning. I’ve already taken half of the Sulfamethoxazole…………. I’m guessing it has something to do with the steroid pills I take all 5 at 5:30am. But ????? It’s Thanksgiving and I’m not going to be able to get an answer today, but I will try to get one Friday. I started chemo in June this year. Any one have the same experience?

Jump to this post

Hi @caroljonae, don't you hate it when these concerning health issues come up during the holidays. I'm tagging @gingerw on this message in the hopes that she may have to tips to offer.

Carol, did you have the same symptoms of burning last night? Were you able to get in touch with your doctor this moring? I agree that this needs to be investigated even if the symptoms have subsided.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 25, 2022
In reply to @callie28 "My husband had his stem cell transplant yesterday Nov. 23 rd. Having a hard time getting..." + (show)
@callie28

My husband had his stem cell transplant yesterday Nov. 23 rd. Having a hard time getting the nausea under control. Have tried lots of meds.. Any recommendations on any particular meds working the best? Thanks

Jump to this post

@callie28, congratulations on your husband's stem cell transplant yesterday. I hope you saw @dkandalec's helpful reply to you with some suggestions and experience. I'm also tagging @loribmt to bring her into the conversation.

The nausea is tough. Has his care team been able to give him anything to help? Did he sleep okay last night? Did you??

REPLY
1 reply
caroljonae | @caroljonae | Nov 25, 2022
In reply to @colleenyoung "Hi @caroljonae, don't you hate it when these concerning health issues come up during the holidays...." + (show)
@colleenyoung

Hi @caroljonae, don't you hate it when these concerning health issues come up during the holidays. I'm tagging @gingerw on this message in the hopes that she may have to tips to offer.

Carol, did you have the same symptoms of burning last night? Were you able to get in touch with your doctor this moring? I agree that this needs to be investigated even if the symptoms have subsided.

Jump to this post

It only burns the night of the chemo injection which is when I took 5 Dexamethasone at 5:30am. Both weeks. I take it early because otherwise I’m up very late, unable to sleep.

Thanks for your response. I received an email: otherwise I didn't know how to respond. There is a lot of things to navigate on this site!

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 25, 2022
In reply to @caroljonae "I new to this connect web site. I have multiple myeloma, osteoporosis and 4 fractures in..." + (show)
@caroljonae

I new to this connect web site. I have multiple myeloma, osteoporosis and 4 fractures in my back that aren’t really as painful as when first discovered. (One collapsed) I have one issue that I don’t have an answer to. I take 5 Dexamethasone at 5:30am on my Wednesday chemo injection day. Last Wednesday evening I started burning when I urinated. I drank a lot of water. Went to bed but couldn’t sleep. It was still burning. Tried many times to urinate because it kept burning. Only trickled. Finally at 4:00am, I found my OTC AZO, took 2 and I finally fell asleep. I have E Coli I was told and am on Sulfamethoxazole-ole-tmp DDs for 5 days. But yesterday the same thing happened at night. Must of gone to bathroom 6 times, but it still burnt. Took otc AZO again, but just weakened the burning. I’ve already taken half of the Sulfamethoxazole…………. I’m guessing it has something to do with the steroid pills I take all 5 at 5:30am. But ????? It’s Thanksgiving and I’m not going to be able to get an answer today, but I will try to get one Friday. I started chemo in June this year. Any one have the same experience?

Jump to this post

@caroljonae I am hoping you are feeling better today? Wondering if you have an UTI [urinary tract infection] that is causing the burning sensation. A doctor will usually prescribe the SMZ-TMP twice a day for 3 or 4 days for an UTI. Once I had an UTI that needed a double length of time, but that was my case. Lots of fluids is always a good thing unless you have kidney issues. Some people swear by lemon water, also.
Ginger

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 26, 2022
In reply to @dkandalec "I’m doing remarkably well. All of my blood counts have rebounded and I was home after..." + (show)
@dkandalec

I’m doing remarkably well. All of my blood counts have rebounded and I was home after 14 days in the hospital! I have been walking 1 to 2 miles a day to help with energy levels. Still have some afternoon fatigue and doing my best to get my appetite back.
Overall I am blessed to have very little side effects and recovering well after 28 days.

Thanks so much for checking in on me and would be glad to assist anyone with any questions or to give any insights on my stem cell journey.
Have a blessed thanksgiving and holiday season. I got this!

Jump to this post

Good morning, @dkandalec! It’s wonderful to hear you’re doing so well after your transplant! That’s the best Thanksgiving news.
It sounds like you’re doing everything right and the walking is one of the most beneficial activities you can do to keep recharging your body! Good job! ☺️

Your input for other members who have Multiple Myeloma and need a stem cell transplant will be invaluable! That’s what makes this forum so special. We are all here for each other and sharing our experiences can become someone else’s survival guide. So thank you for running to the rescue of @callie28, wondering what her husband can do for his nausea post transplant! Your reply was perfect! ☺️ There’s nothing like information from someone who has ‘walked the walk”.
When do you return for your followup?

REPLY
1 reply
callie28 | @callie28 | Nov 27, 2022
In reply to @colleenyoung "@callie28, congratulations on your husband's stem cell transplant yesterday. I hope you saw @dkandalec's helpful reply..." + (show)
@colleenyoung

@callie28, congratulations on your husband's stem cell transplant yesterday. I hope you saw @dkandalec's helpful reply to you with some suggestions and experience. I'm also tagging @loribmt to bring her into the conversation.

The nausea is tough. Has his care team been able to give him anything to help? Did he sleep okay last night? Did you??

Jump to this post

Trying Kytril 2 x a day to see if that works.

REPLY
dkandalec | @dkandalec | Nov 28, 2022
In reply to @loribmt "Good morning, @dkandalec! It’s wonderful to hear you’re doing so well after your transplant! That’s the..." + (show)
@loribmt

Good morning, @dkandalec! It’s wonderful to hear you’re doing so well after your transplant! That’s the best Thanksgiving news.
It sounds like you’re doing everything right and the walking is one of the most beneficial activities you can do to keep recharging your body! Good job! ☺️

Your input for other members who have Multiple Myeloma and need a stem cell transplant will be invaluable! That’s what makes this forum so special. We are all here for each other and sharing our experiences can become someone else’s survival guide. So thank you for running to the rescue of @callie28, wondering what her husband can do for his nausea post transplant! Your reply was perfect! ☺️ There’s nothing like information from someone who has ‘walked the walk”.
When do you return for your followup?

Jump to this post

I have had 2 follow up visits so far. Both were highly encouraging with labs returning awesome blood test results. So good that the next follow up is in 2 weeks that we can do virtually post local lab pull.
After that I see my oncologist mid December and transplant team in mid January and hopefully a return to work 3 months post transplant.

The plan is to keep the myeloma at rest for years to come and a return to as normal life as possible. I am so blessed in my fight.

REPLY
callie28 | @callie28 | Nov 30, 2022
In reply to @dkandalec "Post transplant I used Compazine 10 mg. worked the best. Side effect was drowsiness. I also..." + (show)
@dkandalec

Post transplant I used Compazine 10 mg. worked the best. Side effect was drowsiness. I also used Zofran and continue to use this to control nausea now that I’m home. Regular over the counter antacids were also used while in the hospital.
The key was to take them prior to eating any food or protein drink.
My care team said there were other options available if these did not work.

I will say that these did assist but did not totally remove the nausea /reflux feeling I had during the toughest days 6-10 post transplant / chemo. It also helped by eating small portion, bland type foods every 3-4 hours vs. larger 3 meals. Try crackers, Lara bars, toast, rice, protein drinks (ensure). Believe me, nothing tasted good and had to force myself to try and eat. This was one of the toughest parts of the recovery.

On a positive note, it does get better gradually.I hope your husband finds a medication and diet that works best for him. Get through this next week and hopefully he feels some relief. I am pulling for him. Much positive vibes being sent his way.

Jump to this post

Your information and encouraging words/information are greatly appreciated.,
Thanks so very much.. C

REPLY
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