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CyBorD Side Effects
I've been taking the drugs 5 weeks now, 6 on Thursday. I find myself inexplicably crying. I have been stable on my antidepression drugs for 3 years now. For no reason, great big crocodile tears start rolling down my face. I work in an alternative high school setting, and it makes the student's concerned to see me this way. Also, I'm becoming more nauseous more often, and the antinauseous drug zofran and compazine don't seem to help much lately. I take an ativan and take a nap, but that's not possible at work. Rambling now.
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alaskanmeg - Name: alaskanmeg
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 15 June 12
- Age at diagnosis: 49
Re: CyBorD Side Effects
Hi Alaskanmeg, Have you been back to see one of your doctors about feeling so down? It is not fun to be going thru cancer treatments, but maybe discussing it with them would help. I didn't take CyBorD, just BorD (bortezomib plus dex?), but did have an infusion of Kytril (granisetron), a powerful anti-nauseant, before the treatments. Do they still do that? It helped a lot.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: CyBorD Side Effects
Thanks, I got an appointment for tomorrow. Now I'm armed with information called Kytril 
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alaskanmeg - Name: alaskanmeg
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 15 June 12
- Age at diagnosis: 49
Re: CyBorD Side Effects
I was/am nauseous for 11 of the last 14 days. On August 8 I got a liter and a half of saline to rehydrate me, my creatinine level was 1.4. Next day, it was down to 0.9, and I got a Velcade injection. My oncologist took me off the dex and Cytoxan and was/is going to reintroduce first the dex and then "we'll see".
Thing is last night I got up and defecated 3 times, soft floating stools, but then I started getting nauseous again. Took the Zofran, which had not been helping ... and still isn't. Took the Compazine (prochlorperazine), which had not and still is not helping. I haven't eaten anything this morning, but I drank a glass of milk and then had an explosive stool.
I'm miserable and whining and looking for suggestions. I have a call in to my oncologist, and chewing ginger "candy".
Thing is last night I got up and defecated 3 times, soft floating stools, but then I started getting nauseous again. Took the Zofran, which had not been helping ... and still isn't. Took the Compazine (prochlorperazine), which had not and still is not helping. I haven't eaten anything this morning, but I drank a glass of milk and then had an explosive stool.
I'm miserable and whining and looking for suggestions. I have a call in to my oncologist, and chewing ginger "candy".
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alaskanmeg - Name: alaskanmeg
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 15 June 12
- Age at diagnosis: 49
Re: CyBorD Side Effects
I'm really sorry to hear about the struggles you're having alaskanmeg.
I agree with Nancy that you should talk to your doctors about the depression you're feeling, and I also suggest discussing the nausea at the same time. The fact that you are experiencing both to such an extent may not be a coincidence.
Also, how often are you getting a dose of Velcade, and are you getting it by infusion or as a skin (subq) injection? If you are getting Velcade by infusion, switching to injections may lessen the side effects a bit. Also, if you are getting the Velcade twice a week, it also may be possible to drop the frequency down to once a week. Your doctor may want to stick to twice a week if at all possible, but if it's really being challenging for you, the less frequent dosing may be worth pursuing, because there are studies showing it is basically just as effective as once a week dosing.
Nausea, by the way, is a common side effect of Velcade. If you look at Table 8 of the Velcade prescribing information,
http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/021602s027lbl.pdf
you'll see that 57 percent of the patients treated with just Velacde reported some nausea. Also, 57 percent reported diarrhea and 35 percent reported vomiting. So you are not alone in experiencing these symptoms!
Good luck and please keep us posted on how you are doing and what you learn from your docs.
I agree with Nancy that you should talk to your doctors about the depression you're feeling, and I also suggest discussing the nausea at the same time. The fact that you are experiencing both to such an extent may not be a coincidence.
Also, how often are you getting a dose of Velcade, and are you getting it by infusion or as a skin (subq) injection? If you are getting Velcade by infusion, switching to injections may lessen the side effects a bit. Also, if you are getting the Velcade twice a week, it also may be possible to drop the frequency down to once a week. Your doctor may want to stick to twice a week if at all possible, but if it's really being challenging for you, the less frequent dosing may be worth pursuing, because there are studies showing it is basically just as effective as once a week dosing.
Nausea, by the way, is a common side effect of Velcade. If you look at Table 8 of the Velcade prescribing information,
http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/021602s027lbl.pdf
you'll see that 57 percent of the patients treated with just Velacde reported some nausea. Also, 57 percent reported diarrhea and 35 percent reported vomiting. So you are not alone in experiencing these symptoms!
Good luck and please keep us posted on how you are doing and what you learn from your docs.
Re: CyBorD Side Effects
Yes, Alaskan Meg, Please let us know how everything is going. I was just chatting yesterday with neighbours who made me home made soup at the time of the Velcade induction chemo. Coincidentally, they lived in Juneau 40 years ago when their kids were young, and remember it as a very warm hearted community. We had all been to Skagway in July!! I couldn't eat anything very rich, like meats at that time. Ginger ale was a soothing beverage...I think that ginger is catching on as an anti-nauseant. I have even seen ginger flavored Gravol advertised.
I did have the drug Kytril infused before the Velcade. It did quell the nausea a lot, but slowed down my digestive system, to the point where I just had to take Senkot laxative pills, or I would be severely constipated, like nothing I had ever experienced before! Just a 'heads up' if that gets prescribed to you. As Cheryl notes, there are different methods of administering Velcade too.
At least in my case, and for many other people, the induction chemo cycles worked well, and I wasn't on those cycles for more than just a few months. Hope the chemo is working well for you too.
I did have the drug Kytril infused before the Velcade. It did quell the nausea a lot, but slowed down my digestive system, to the point where I just had to take Senkot laxative pills, or I would be severely constipated, like nothing I had ever experienced before! Just a 'heads up' if that gets prescribed to you. As Cheryl notes, there are different methods of administering Velcade too.
At least in my case, and for many other people, the induction chemo cycles worked well, and I wasn't on those cycles for more than just a few months. Hope the chemo is working well for you too.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: CyBorD Side Effects
Dear Alsakan Meg,
I suspect that the exacerbation of your depression symptoms could be a side effect of the dexamethasone you are taking. Does it seem to be worse when you are on dex?
Steroids are notorious for reeking havoc on people's emotional state. I would discuss this with your oncologist. Also, it might be worthwhile to have a psychologist or psychiatrist (perhaps one who is familiar with cancer patients) evaluate the situation and see if they have recommendations for how to best manage the situation.
The nausea is likely from the cyclophosphamide (Cytoxan) and to some extent the bortezomib (Velcade). I agree with using subcutaneous Velcade and pre-medicating you with a powerful anti-nausea medication prior to administration of the cyclophosphamide and Velcade.
Best of luck to you!
Pete V.
I suspect that the exacerbation of your depression symptoms could be a side effect of the dexamethasone you are taking. Does it seem to be worse when you are on dex?
Steroids are notorious for reeking havoc on people's emotional state. I would discuss this with your oncologist. Also, it might be worthwhile to have a psychologist or psychiatrist (perhaps one who is familiar with cancer patients) evaluate the situation and see if they have recommendations for how to best manage the situation.
The nausea is likely from the cyclophosphamide (Cytoxan) and to some extent the bortezomib (Velcade). I agree with using subcutaneous Velcade and pre-medicating you with a powerful anti-nausea medication prior to administration of the cyclophosphamide and Velcade.
Best of luck to you!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: CyBorD Side Effects
Thanks everybody! It was determined that I have gastritis and esophagitis. Now taking Protonix (pantoprazole) and Carafate (sucralfate). Today I'm getting subq Velcade and it'll be determined if I go back on the C&D of CyBorD.
As far as my mental health, I have been seeing a psychologist and psychiatrist for the last 4 years. They both think it's the cancer meds. Since I've been off dex, I've stopped crying for no reason at all. Golly that was so weird!
As far as my mental health, I have been seeing a psychologist and psychiatrist for the last 4 years. They both think it's the cancer meds. Since I've been off dex, I've stopped crying for no reason at all. Golly that was so weird!
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alaskanmeg - Name: alaskanmeg
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 15 June 12
- Age at diagnosis: 49
Re: CyBorD Side Effects
Hi Alaskan Meg, Good to know that you are feeling better now. Did you notice the post from the lady in Anchorage too? Sounds like the beginnings of a support group where you live! Good luck in your ongoing treatments too, and take good care of yourself!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: CyBorD Side Effects
Hi Meg,
I'm on a similar routine and I work full time Monday-Friday. I try to set up my weekly routine to stay as 'normal' as possible for work, which means I take my CyBorD on Friday evenings in order to absorb the side effects over the weekend as much as possible.
My #1 Rule. Drink lots of water. I have a couple of 1-liter camelbak water bottles. I try to drink 4 liters a day. Using Gatorade powder, or K2O or crystal light mixed with ice water at times – whatever it takes to keep hydrated (yes - pee rivers - nice clear or light yellow rivers). I also use one of the liters each day to mix in some Miralax powder to offset any constipation affects of the pills. I'm still playing with the amounts but about half a cap a day for a few days seems to help by mid week.
I take subcutaneous Velcade shot Friday afternoon in Portland. I follow up an hour later when I get home with something to eat and drink and then take 2 Kytril (as directed - 30 minutes before taking my Cytoxan). Then my least favorite part of the week - taking 12 Cytoxan (cyclophosphamide) pills with milk. I do this as close to 30 minutes after the Kytril as possible.
Note: I tried Zofran (ondansetron) earlier and it didn't work for me (migraines., etc) so they switched me to Kytril (much better).
I continue my Friday night routine with the associated antiviral pill (acyclovir) and Pepcid (famotidine) a little later. I try to space these out by 30-60 minutes, and take small bits of food and drink.
Closer to bed time I take one Valium (diazepam) as an extra anti-nausea, and to counteract the dex at night, then I take the dex with some milk . I'm usually able to sleep for a few hours, then get up and go to the bathroom, put on dry clothes (I sweat the first night) and go back to sleep for a few more hours. If needed I'll read my kindle until I fall back asleep.
The following morning I drink my first liter of K2O (kiwi strawberry) ice water along with my morning antiviral pill. Then, a half hour later or so, some oatmeal and another Kytril to keep the nausea from setting in. My wife picked up from others with myeloma that it's best to keep the nausea at bay as opposed to trying to take the pill after the nausea sets in.
The rest of the weekend is drinking lots of ice water (flavored or plain) and timing out the twice daily antivirals (one towards morning and one towards evening) once daily Pepcid (towards evening) and an evening Kytril and/or Valium Saturday night leading up to bed time. I do the Kytril again Sunday morning but taper off the Kytril and Valium by Sunday night to keep from being less groggy at work Monday morning.
I try to go easy on the weekend even though the dex is kicking in by Saturday morning and I could start (but lord knows never actually finish) a million home projects. There is a finite amount of physical, mental, emotional energy in the week and if I exert too much on the weekend (inspired by dex) I will struggle more later in the week. Reading, resting, hydrating are my prioties. Not always easy to do, but I try.
The rest of the week gets better day by day - less chemo fog, less nausea, less fatigue. More normal day by day.
I am on week 16 of CyBorD and week 25 of chemo overall. The cumulative effects are felt a little more each week and I may start taking some Mondays off from work in the following weeks (8 more to go before we come to the end of this phase).
Try to drink as much water as you can, using whatever tricks and flavors you need to. I try to have a full bottle when I'm commuting back & forth to work.
And for what it's worth, I cry much easier now than I ever did before. Some of those heart-tugging commercials or human-interest stories during the Olympics really set off the water works. Its not just you.
Hope some of this helps. Hang in there. You are doing great.
Jeff & Kim (Hillsboro, Oregon)
I'm on a similar routine and I work full time Monday-Friday. I try to set up my weekly routine to stay as 'normal' as possible for work, which means I take my CyBorD on Friday evenings in order to absorb the side effects over the weekend as much as possible.
My #1 Rule. Drink lots of water. I have a couple of 1-liter camelbak water bottles. I try to drink 4 liters a day. Using Gatorade powder, or K2O or crystal light mixed with ice water at times – whatever it takes to keep hydrated (yes - pee rivers - nice clear or light yellow rivers). I also use one of the liters each day to mix in some Miralax powder to offset any constipation affects of the pills. I'm still playing with the amounts but about half a cap a day for a few days seems to help by mid week.
I take subcutaneous Velcade shot Friday afternoon in Portland. I follow up an hour later when I get home with something to eat and drink and then take 2 Kytril (as directed - 30 minutes before taking my Cytoxan). Then my least favorite part of the week - taking 12 Cytoxan (cyclophosphamide) pills with milk. I do this as close to 30 minutes after the Kytril as possible.
Note: I tried Zofran (ondansetron) earlier and it didn't work for me (migraines., etc) so they switched me to Kytril (much better).
I continue my Friday night routine with the associated antiviral pill (acyclovir) and Pepcid (famotidine) a little later. I try to space these out by 30-60 minutes, and take small bits of food and drink.
Closer to bed time I take one Valium (diazepam) as an extra anti-nausea, and to counteract the dex at night, then I take the dex with some milk . I'm usually able to sleep for a few hours, then get up and go to the bathroom, put on dry clothes (I sweat the first night) and go back to sleep for a few more hours. If needed I'll read my kindle until I fall back asleep.
The following morning I drink my first liter of K2O (kiwi strawberry) ice water along with my morning antiviral pill. Then, a half hour later or so, some oatmeal and another Kytril to keep the nausea from setting in. My wife picked up from others with myeloma that it's best to keep the nausea at bay as opposed to trying to take the pill after the nausea sets in.
The rest of the weekend is drinking lots of ice water (flavored or plain) and timing out the twice daily antivirals (one towards morning and one towards evening) once daily Pepcid (towards evening) and an evening Kytril and/or Valium Saturday night leading up to bed time. I do the Kytril again Sunday morning but taper off the Kytril and Valium by Sunday night to keep from being less groggy at work Monday morning.
I try to go easy on the weekend even though the dex is kicking in by Saturday morning and I could start (but lord knows never actually finish) a million home projects. There is a finite amount of physical, mental, emotional energy in the week and if I exert too much on the weekend (inspired by dex) I will struggle more later in the week. Reading, resting, hydrating are my prioties. Not always easy to do, but I try.
The rest of the week gets better day by day - less chemo fog, less nausea, less fatigue. More normal day by day.
I am on week 16 of CyBorD and week 25 of chemo overall. The cumulative effects are felt a little more each week and I may start taking some Mondays off from work in the following weeks (8 more to go before we come to the end of this phase).
Try to drink as much water as you can, using whatever tricks and flavors you need to. I try to have a full bottle when I'm commuting back & forth to work.
And for what it's worth, I cry much easier now than I ever did before. Some of those heart-tugging commercials or human-interest stories during the Olympics really set off the water works. Its not just you.
Hope some of this helps. Hang in there. You are doing great.
Jeff & Kim (Hillsboro, Oregon)
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Morank - Name: Kim and Jeff
- Who do you know with myeloma?: Spouse- Jeff
- When were you/they diagnosed?: Dec. 2011
- Age at diagnosis: 47
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