Good point about opiate pain killers and constipation, Eric. Thanks for mentioning that.
Amo - Unfortunately, fatigue occurs quite often during treatment for multiple myeloma. It can also be a side effect of the disease itself. You can find previous discussions here in the forum about fatigue by going to this link.
There have been a number of people here in the forum who have reported having issues with ringing in their ears. Sometimes the problem has occurred after the start of treatment, but, in other cases, people reported having the issue even before they were diagnosed with multiple.
In those cases where the ringing in the ears occurred after the start of treatment, there seems to be a slight tendency for the side effect to be associated with Revlimid therapy, but there also are postings where people taking Velcade reported the problem. We're not sure if taking dexamethasone also may play a role.
Here is a listing of postings in the forum that mention the keywords "ringing" or "tinnitus".
Forums
Re: My story - diagnosed with multiple myeloma this week
I have been on RVD (Revlimid, Velcade, dexamethasone) for 4 weeks now, and it seems that, other than constipation and occasional ringing in the ears, I have been tolerating it pretty well.
However, my ankles and feet are swollen now to a point that my right foot is getting like dry cracking pain from the skin. Is this maybe due to one of the meds?
However, my ankles and feet are swollen now to a point that my right foot is getting like dry cracking pain from the skin. Is this maybe due to one of the meds?
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Hi Amo
I will never again treat constipation as a minor problem. I take probiotics every day (Culturelle and Align), and if that doesn't keep me regular, I take either Miralax or a little Milk of Magnesia.
Your ankles swelling could be from kidney problems. You might need to ask the doctor.
Another thing that helped me when I was taking most of the same drugs was to see how much my cancer markers went down with the treatment - made it all feel like it was worth while.
I will never again treat constipation as a minor problem. I take probiotics every day (Culturelle and Align), and if that doesn't keep me regular, I take either Miralax or a little Milk of Magnesia.
Your ankles swelling could be from kidney problems. You might need to ask the doctor.
Another thing that helped me when I was taking most of the same drugs was to see how much my cancer markers went down with the treatment - made it all feel like it was worth while.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: My story - diagnosed with multiple myeloma this week
Yesterday I got a shot of Zophran and my nurse told me it will increase the bone pain except that she didn't say by how much, man it is excruciating pain. has it happened to anyone else?
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Hi Amo,
Sorry about the pain you're having.
Do you mean Zofran, the anti-nausea medication, or Zometa, the bone building drug?
Sorry about the pain you're having.
Do you mean Zofran, the anti-nausea medication, or Zometa, the bone building drug?
Re: My story - diagnosed with multiple myeloma this week
Amo, this is probably from Zometa. Zometa is in a class of medications called bisphosphonates. The medication is proven to prevent myeloma related bone problems, like new fractures and the need for radiation. In addition, recent studies have shown that patients on Zometa actually live longer than those patients who don't receive it.
It does have side effects though. It is common with the first dose to develop bone pain. Some patients have "flu" like symptoms with the first dose. It usually doesn't occur with subsequent infusions.
Best wishes,
Jlk
It does have side effects though. It is common with the first dose to develop bone pain. Some patients have "flu" like symptoms with the first dose. It usually doesn't occur with subsequent infusions.
Best wishes,
Jlk
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: My story - diagnosed with multiple myeloma this week
Hi Amo,
A couple other things about Zometa from my own experience. I have not had the bone pain you describe, but I have occasionally had the flu-like symptoms Dr. Kaufman described, the day after getting a Zometa treatment. It seems like the rate of the infusion has an effect with me. If it is done slowly (~30 minutes), I am less likely to have the flu-like symptoms than if it is done more quickly.
So I wonder if slowing down the infusion next time you get it might reduce the chance of the bone pain occurring again, along with the fact that Dr. Kaufman said the bone pain usually occurs on the first infusion only, if it occurs at all.
Good luck,
Mike
A couple other things about Zometa from my own experience. I have not had the bone pain you describe, but I have occasionally had the flu-like symptoms Dr. Kaufman described, the day after getting a Zometa treatment. It seems like the rate of the infusion has an effect with me. If it is done slowly (~30 minutes), I am less likely to have the flu-like symptoms than if it is done more quickly.
So I wonder if slowing down the infusion next time you get it might reduce the chance of the bone pain occurring again, along with the fact that Dr. Kaufman said the bone pain usually occurs on the first infusion only, if it occurs at all.
Good luck,
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: My story - diagnosed with multiple myeloma this week
Thanks Doctor
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
So is it the Zometa that causes the extra pain? It's like I have bunch of broken ribs and hard to breath. I will have my 3rd round of radiation today and it seems the pain has not gotten worse maybe I even see improvement.
Thanks Amo
Thanks Amo
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Amo wrote:
I have my marrow biopsy scheduled for Tuesday and don't know what to expect as far as pain."
The experience is very individual from person to person. I had my first bone marrow biopsy in June. Only local anesthesia to skin and tissue.
No pain when getting access to the bone.
A feeling without pain, in the ordinary definition of the word, when breaking through the bone. But a psychological reaction, "this is wrong, I am under attack" - but that was all, no panic. Expect the physician or a nurse to talk/coach you through the process.
Then, when they sucked the fluid out I felt a distinct pain, maybe for 2-4 or a few more seconds. Not enough to scream or to kick the nurse or doctor, neither at once or afterwards. But just enough to consider it
Then they took some hard samples from the bone marrow. Not quite as painful, but still a bit so. They took 3-4 pieces. They try to work fast, and I guess that the annoying part was done within very few minutes and with only 20-30 seconds of pain altogether. I did NOT count!
Afterwards, some soreness for a few days, but less than they told me it could be. They said it could feel like having been kicked during a football game. But it was nothing like that.
They got a small amount of blood in the fluid part of the sample, and need to retake to be able to do the FISH analysis. Getting it done on Monday.
After my first experience I am not scared. I just hope that it will not be worse than the first time.
I hope that this is giving you a perspective and I do not believe that you should be scared.
Each of us will have an individual experience, but not being afraid is probably important. I am not.
Best regards
I have my marrow biopsy scheduled for Tuesday and don't know what to expect as far as pain."
The experience is very individual from person to person. I had my first bone marrow biopsy in June. Only local anesthesia to skin and tissue.
No pain when getting access to the bone.
A feeling without pain, in the ordinary definition of the word, when breaking through the bone. But a psychological reaction, "this is wrong, I am under attack" - but that was all, no panic. Expect the physician or a nurse to talk/coach you through the process.
Then, when they sucked the fluid out I felt a distinct pain, maybe for 2-4 or a few more seconds. Not enough to scream or to kick the nurse or doctor, neither at once or afterwards. But just enough to consider it
Then they took some hard samples from the bone marrow. Not quite as painful, but still a bit so. They took 3-4 pieces. They try to work fast, and I guess that the annoying part was done within very few minutes and with only 20-30 seconds of pain altogether. I did NOT count!
Afterwards, some soreness for a few days, but less than they told me it could be. They said it could feel like having been kicked during a football game. But it was nothing like that.
They got a small amount of blood in the fluid part of the sample, and need to retake to be able to do the FISH analysis. Getting it done on Monday.
After my first experience I am not scared. I just hope that it will not be worse than the first time.
I hope that this is giving you a perspective and I do not believe that you should be scared.
Each of us will have an individual experience, but not being afraid is probably important. I am not.
Best regards
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
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