Hi,
My dad who is a Vietnam Veteran, was just recently diagnosed at 64 with Stage III multiple myeloma almost 3 weeks ago in late January after a trip to the doctor revealed he had pneumonia which later lead to the diagnosis because the pain would not go away. My intermediate family & myself have never had experience of dealing with someone who has cancer. He started chemo injections 2 weeks ago on Velcade, dexamethasone, & Fentanyl patches.
My dad is experiencing a lot of pain and they gave him oxycodone to take as needed, but it is not helping. He is in pain throughout the day, but at night it is almost unbearable. He does not want to or like the oxycodone because he says it gives him hallucinations. My dad is a very strong man & I have never seen him like this.
My question to you all is what besides oxycodone have you all had experiences with as far as pain management & does it work for pain relief? Side Effects? Any help would be deeply appreciated.
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Pain management for someone newly diagnosed with myeloma?
Last edited by kimble2 on Fri Feb 14, 2014 12:23 am, edited 1 time in total.
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kimble2 - Name: Mellissa
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: 1/14
- Age at diagnosis: 64
Re: Pain management for someone newly diagnosed with myeloma
We were in the hospital for nearly three weeks because of multiple myeloma issues, including extreme bone pain and muscle pain. We could hardly move without experiencing extreme pain, and was basically in bed for 2 weeks. Our therapy for multiple myeloma was CyBorD. But to help with the bone pain, we were given a fentanyl patch, a lidocaine patch, and some oxy.
It's hard to say whether it helped or not, because the doctor decided to give a morphine drip, stopping the fentanyl, but keeping the lidocaine patch. I can't remember if we stopped the oxy.
While it didn't stop the pain, we sometimes used a squeeze ball in the hand to squeeze when the pain got intense.
At the end of week two, i think the chemotherapy started to work, because we were able to get out of bed and move, although still in pain, not as severe.
We were taken of the morphine, but still on the oxy and lidocaine.
Today, about a month after release from the hospital, we are still taking oxy.
The sideffects of the morphine was falling asleep randomly and constipation. Oxy have us constipation too. I don't recall any sideffects from the lidocaine.
I know oxy might not be a choice because of the sideffects, but perhaps the other suggestions may help you. Best of luck.
It's hard to say whether it helped or not, because the doctor decided to give a morphine drip, stopping the fentanyl, but keeping the lidocaine patch. I can't remember if we stopped the oxy.
While it didn't stop the pain, we sometimes used a squeeze ball in the hand to squeeze when the pain got intense.
At the end of week two, i think the chemotherapy started to work, because we were able to get out of bed and move, although still in pain, not as severe.
We were taken of the morphine, but still on the oxy and lidocaine.
Today, about a month after release from the hospital, we are still taking oxy.
The sideffects of the morphine was falling asleep randomly and constipation. Oxy have us constipation too. I don't recall any sideffects from the lidocaine.
I know oxy might not be a choice because of the sideffects, but perhaps the other suggestions may help you. Best of luck.
Re: Pain management for someone newly diagnosed with myeloma
You don't mention what the pain is from. If it is bone pain has your father been started on infusions of Zometa or Aredia for the bones? Beginning treatment usually helps to reduce any pain from the Myeloma, but it takes some time. I started treatment when I developed a fracture of my left arm. Within a month of starting treatment with Revlimid, Dexamethasone and Zometa infusions the pain in my arm from the fracture diminished dramatically. My oncologist had given me a prescriptin of Oxycontin for the bone pain, but that didn't even begin to touch the level of pain I was having. Treatment for the Myeloma did.
Good luck to your father with his treatment,
Nancy in Phila
Good luck to your father with his treatment,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Pain management for someone newly diagnosed with myeloma
I also experienced relief from severe pain after having myeloma therapy and bone building treatments, as Nancy has mentioned. There is a 'Pain Clinic' here which has helped many myeloma patients who have chronic pain to manage that. Not everyone succeeds in becoming pain free unfortunately. For vertebral fractures, some patients have 'kyphoplasty' to relieve that severe pain too. So there would be avenues to explore for quite a lot of pain issues.
One medication that helped me when my muscles were in painful spasms after vertebral fractures, was the muscle relaxant, Flexaril. I used that for months, along with other pain meds.
I also think that pneumonia itself can cause pain, although I have not experienced that myself. I hope that your Dad soon gets in to a treatment regimen that helps him with the myeloma and the pain issues!
One medication that helped me when my muscles were in painful spasms after vertebral fractures, was the muscle relaxant, Flexaril. I used that for months, along with other pain meds.
I also think that pneumonia itself can cause pain, although I have not experienced that myself. I hope that your Dad soon gets in to a treatment regimen that helps him with the myeloma and the pain issues!
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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: Pain management for someone newly diagnosed with myeloma
I was also diagnosed as a result of suspected pneumonia. Just finished fourth cycle of Zometa (monthly) 20 mg rev, 40 mg Dex. The Zometa I feel gave pain relief after 3 infusions. I take Hydrocodone only occasionally for back pain. My back pain was pretty intense prior to treatment. I'm also 64 and a Vietnam vet. Has your father contacted the VA? If not , do so as multiple myeloma is a presumed Agent Orange disability..
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Waldopepper - Name: Wayne m
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
Re: Pain management for someone newly diagnosed with myeloma
Hi Kimble2,
Pain meds are a tricky thing -- not every med works for everybody. If the Oxy isn't working for your dad, let the docs know. He may do better on a different type of med. Also, in general, pain meds work better if you take them consistently, as directed. You need to get ahead of the pain and keep it at bay. If the pain comes back, or you are only taking the meds when the pain is really bad, it can be much harder to control.
Good luck,
Lyn
Pain meds are a tricky thing -- not every med works for everybody. If the Oxy isn't working for your dad, let the docs know. He may do better on a different type of med. Also, in general, pain meds work better if you take them consistently, as directed. You need to get ahead of the pain and keep it at bay. If the pain comes back, or you are only taking the meds when the pain is really bad, it can be much harder to control.
Good luck,
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: Pain management for someone newly diagnosed with myeloma
Hi Kimble,
Sorry about your dad. I to experienced hallucinations with oxycodone, when i was first hospitalized and diagnosed ("quite advanced myeloma" - no stage ever mentioned in my reports ). I was on a fentanyl patch which worked well for me.
Best wishes
Sorry about your dad. I to experienced hallucinations with oxycodone, when i was first hospitalized and diagnosed ("quite advanced myeloma" - no stage ever mentioned in my reports ). I was on a fentanyl patch which worked well for me.
Best wishes
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jet - Name: nzgirl
- Who do you know with myeloma?: me
- When were you/they diagnosed?: september 2013
- Age at diagnosis: 55
Re: Pain management for someone newly diagnosed with myeloma
Thanks everyone for your responses so far! Very helpful with making suggestions to his doctors. The doctors increased the dosages on his fentanyl patch and oxycodone. Although he refuses to take oxycodone and was in so much pain yesterday that we had to take him to the emergency room.
I'm not sure of all the details at this moment, but the doctors mentioned something about his spine and that is pressing on something and may be causing pain & therefore surgery may be necessary. So I'll have to wait in see and hope for the best.
I'm not sure of all the details at this moment, but the doctors mentioned something about his spine and that is pressing on something and may be causing pain & therefore surgery may be necessary. So I'll have to wait in see and hope for the best.
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Anonymous
Re: Pain management for someone newly diagnosed with myeloma
FYI. Your dads multiple myeloma could be the result of Agent Orange exposure in Vietnam. It is one of the presumptive diseases and your dod would not be required to prove exposure. He should contact the VA.. He could also contact a Vietnam Veterans of America advocate.
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Len
Re: Pain management for someone newly diagnosed with myeloma
My very best to you and your dad.
My husband spent 8 nights in the hospital when he was first diagnosed in February 2013, and he was in considerable pain. He was prescribed Morphine, which helped, but caused him to sleep nearly constantly. After he was discharged, in addition to Oxycontin (20mg/twice daily) and Oxycodone (20mg/every 6 hours, PRN) my husband's pain was relieved by taking Dexamethasone (40mg/once per week). As I understand it, Dex helps fight the cancer activity, but it also provides a measure of pain relief. The Dex kept him awake the night after he took his weekly dose, and he was edgy for a few days, but he managed reasonably well. I think occasional low dosage Lorazepam (5mg) can help abate the edginess. As others have suggested, Zometa helps, too.
Other than pain medications, my husband finds that he's most comfortable in a recliner that we purchased after his diagnosis, or in bed, on his side, with pillows artfully placed behind his back and against his stomach. He's truly not comfortable for too long anywhere else (although we can spend a night or two in a hotel on occasion without too much of an issue).
Best of luck.
My husband spent 8 nights in the hospital when he was first diagnosed in February 2013, and he was in considerable pain. He was prescribed Morphine, which helped, but caused him to sleep nearly constantly. After he was discharged, in addition to Oxycontin (20mg/twice daily) and Oxycodone (20mg/every 6 hours, PRN) my husband's pain was relieved by taking Dexamethasone (40mg/once per week). As I understand it, Dex helps fight the cancer activity, but it also provides a measure of pain relief. The Dex kept him awake the night after he took his weekly dose, and he was edgy for a few days, but he managed reasonably well. I think occasional low dosage Lorazepam (5mg) can help abate the edginess. As others have suggested, Zometa helps, too.
Other than pain medications, my husband finds that he's most comfortable in a recliner that we purchased after his diagnosis, or in bed, on his side, with pillows artfully placed behind his back and against his stomach. He's truly not comfortable for too long anywhere else (although we can spend a night or two in a hotel on occasion without too much of an issue).
Best of luck.
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abi
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