I am new here. Have been reading many posts. Thank you all for posting your stories and good info.
My dad was diagnosed on June 13. Probably a typical story. He had no idea. In fact, this past fall, he was playing ice hockey. He is 73 years old. He complained of rib pain, but we thought, "you play ice hockey; of course you're going to have pain." He then developed back pain. This past March, he had an ORIF surgery to repair 2 fractured and dislocated vertebrae. During surgery, #3 broke. Post surgery was ok, weak, but was able to ambulate some. Was told osteoporosis. Back pain worsened, on 2nd visit to doc for this pain, found fractured #4 vertebrae. Sent to ER. MRI showed broken #5 vertebrae, and 5 fractured ribs. Lesions on bones, M proteins, hypercalciemia, and you know the rest from there. Multiple myeloma. IgG, lambda is his thing.
So, yesterday, sent to a "rehab facility" because he did not qualify for in-hospital rehab. To qualify for in hospital rehab, he has to be able walk and sit upright for a certain amount of time. This past year, he developed atrial fibrillation, and has been placed on calcium channel blockers, (and the doctors say the atrial fibrillation is not related to hypercalcemia) He is on heavy duty pain medications.
He has started dexamethasone, and still no Revlimid. It was ordered. It was prescribed. My mom registered him. Hospital told my mom that she had to go to the oncologist's office to get a prescription for Revlimid, because the hospital does not carry it and cannot order it. Mom called the oncologists office, they needed paperwork from hospital, and over a week later, still no Revlimid. It is being mailed to my mom's house, so she can deliver it to the rehab center. Does anyone know if this is normal? And is there paperwork and forms, etc to fill out each month?
Then, oncologist office also told my mom that he cannot come to office by stretcher, he needs to come by wheel chair. He cannot sit upright right now. Is that normal? What happens to people who cannot sit upright? They don't get to see the doctor?
The "rehab" center did not have his Fentanyl dose, so this morning he was absolutely miserable. A wonderful nurse went to another section of the facility and found a patch for him. But what happens in three days when he needs another? I think she said they would try to order some. But, someone ordered Revlimid for him too and we haven't seen that either. Is this normal?
Why such a long wait on medication? And he is really doped up on pain medications, but what else is there to do? I don't want him to have pain, but he is too stoned to walk, then when he tries to sit up or ambulate, he has so much pain in his sternum which has an old fracture. Can't he do radiation for bone pain? Anyone have any other ideas that have worked, meditation ( of course he is so stoned he'd just fall asleep), maybe acupuncture? Should we think about moving him to another facility, not rehab center but hospital?
I am open to any ideas, suggestions, stories, (especially triumphant stories) prayers. Anything. thank you.
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lovemydad - Name: Chris
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: June 13,2013
- Age at diagnosis: 73
Re: Delays getting Revlimid & pain medications
I wish I had more time for this response but have to reply right away. My fiance was diagnosed in March. It took weeks for the Revlimid, so yes, that is normal. It has to go through special compounding pharmacies and is super highly regulated. It will come.
My fiance was on major pain medications, too. He had a stroke in 2010 that left him with super mild speech and cognition trouble that was only evident when he was exhausted. But even small doses of pain medications left him unable to function; he was so confused and unable to say what he needed. That part was breaking my heart, too. He recently got an intrathecal pain pump, and it was a life saver. I don't know if your Dad would be a good candidate, but I would absolutely recommend finding out!! It has changed everything for my fiance. For both of us. We are hopeful again, and he is no longer trapped in the fog.
Good luck. Stay hopeful. One day at a time.
Dawn
My fiance was on major pain medications, too. He had a stroke in 2010 that left him with super mild speech and cognition trouble that was only evident when he was exhausted. But even small doses of pain medications left him unable to function; he was so confused and unable to say what he needed. That part was breaking my heart, too. He recently got an intrathecal pain pump, and it was a life saver. I don't know if your Dad would be a good candidate, but I would absolutely recommend finding out!! It has changed everything for my fiance. For both of us. We are hopeful again, and he is no longer trapped in the fog.
Good luck. Stay hopeful. One day at a time.
Dawn
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lsdawns
Re: Delays getting Revlimid & pain medications
Thank you for the great advice and the reassurance. I appreciate it and will ask about the pain pump.
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lovemydad - Name: Chris
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: June 13,2013
- Age at diagnosis: 73
Re: Delays getting Revlimid & pain medications
Revlimid comes through a specialty pharmacy and does require a fair amount of paperwork to get going for the first time. And yes, hospitals do not stock it. It has to be delivered to someone's home from the specialty pharmacy and someone has to be there to receive it (they will not leave it at the door). A longer than 1 week wait with all the appropriate forms filled and submitted is not ideal. I would call the specialty pharmacy and explain the urgency of the situation. The first prescription is always the slowest. It typically goes more smoothly thereafter.
If there is further delay for uncontrollable reasons, there are other medications that can be used instead. I am a fan of the cyclophosphamide, Velcade and dexamethasone combination for patients who need immediate access to effective therapy.
We have had patients come to our clinic in a stretcher. To be told that you cannot is highly peculiar.
I am sorry your Dad is having such a hard time right now. As those compression fractures heal, his pain should improve but it will take a long time. Best of luck and let us know if you have any other questions.
Pete V.
If there is further delay for uncontrollable reasons, there are other medications that can be used instead. I am a fan of the cyclophosphamide, Velcade and dexamethasone combination for patients who need immediate access to effective therapy.
We have had patients come to our clinic in a stretcher. To be told that you cannot is highly peculiar.
I am sorry your Dad is having such a hard time right now. As those compression fractures heal, his pain should improve but it will take a long time. Best of luck and let us know if you have any other questions.
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Delays getting Revlimid & pain medications
Hello,
I hope things go better for your Dad soon and that he's comfortable. My husband was diagnosed 2 years ago with multiple myeloma and his original hematologist-oncologist referred him to the University of Michigan multiple myeloma clinic, where he was able to get enrolled in a clinical drug study for carfilzomib (before it was FDA approved) along with Revlimid and dex.
Just want you to know about the UM multiple myeloma Clinic in case you want to investigate having your Dad treated there if you aren't satisfied with Beaumont. UM has many clinical trials, too. And we've had good experiences with the oncology nurses, as well.
We live north of Gaylord, so we had a 3 1/2 hr drive each way while my husband was in the study: 3 weeks each month for 8 months and then every other week until he hit the 2 year mark. But it was worth every mile and snowstorm we endured (and there were some doozies!) over those 2 years to have him be in remission now and feeling a lot better. He was very sick at first and has endured almost all the textbook complications of multiple myeloma, but now is feeling pretty darn good most of the time and is still working (60 years old) and doing everything like he did before his diagnosis.
I wish you and your Dad all the best as he battles his multiple myeloma.
Chris M.
I hope things go better for your Dad soon and that he's comfortable. My husband was diagnosed 2 years ago with multiple myeloma and his original hematologist-oncologist referred him to the University of Michigan multiple myeloma clinic, where he was able to get enrolled in a clinical drug study for carfilzomib (before it was FDA approved) along with Revlimid and dex.
Just want you to know about the UM multiple myeloma Clinic in case you want to investigate having your Dad treated there if you aren't satisfied with Beaumont. UM has many clinical trials, too. And we've had good experiences with the oncology nurses, as well.
We live north of Gaylord, so we had a 3 1/2 hr drive each way while my husband was in the study: 3 weeks each month for 8 months and then every other week until he hit the 2 year mark. But it was worth every mile and snowstorm we endured (and there were some doozies!) over those 2 years to have him be in remission now and feeling a lot better. He was very sick at first and has endured almost all the textbook complications of multiple myeloma, but now is feeling pretty darn good most of the time and is still working (60 years old) and doing everything like he did before his diagnosis.
I wish you and your Dad all the best as he battles his multiple myeloma.
Chris M.
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Chris M
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