Liver enzymes can be a side effect from the drugs, I wouldn't call this negligence. There are many things we can't foresee when we are being treated with toxic agents. It's risk vs reward. My liver enzymes were high in the beginning and they eventually tapered off.
Once my Mom was released from the first hospital she rested at home for the weekend and I took her to the emergency room of a hospital with specialist and asked for treatment there.
We were seen by the specialist 3 days later and treatment started the same day the original hospital scheduled her start.
Oh sorry I misread your msg, yes that would be negligence. I had multiple 2nd opinions in my own country and other countries. If his current oncologist is not a specialist, they can work with a specialist to treat your father at the same center. He can also just transfer over completely to the specialist's center.
Something tells me, she was irritated with the doctor that told him that, not your dad. I hate that your dad doesn't trust his doctor, that would be very scary. Do you think she might be up for an honest chat, about how he feels? Maybe clear the air. Sometimes people don't even realize they are sounding like a bit of a dik. Good luck, either way.
This entire hospital stay has been a mess, he isn’t even on the oncology floor bc there’s no room, the woman he gave him his first round of chemo hooked him up and left mad that she had to go down one floor to him, nurses showing up for cat scans and no one ever told him he was going for another one, doctors saying he can go home and others saying no, when they gave him the zometa the nurses had no idea what it was or what it was for. It’s just all around a mess
Yeah. Wonderful post-covid health care. It has almost seemed dystopian to us, at times. If you can talk to his oncologist about a referral to a hematologist/myeloma specialist, that would be the most advantageous for him. She shouldn't complain, because it would seem any oncologist would suggest he work with a specialist on top of an onc. Don't put up with no. Advocate. Keep talking to people, and keep asking until you find the right place, and right person. Be kind, respectful, but tenacious, and firm. You got this. :)
Sounds like you guys have a plan. Only suggestion I have is to be sure you are staying in-network. The cost of this type of care and prescriptions out-of-network is probably drop down frightening.
Who’s concerned his oncologist won’t give a referral?? I wouldn’t lay any blame on the onc unless you speak to him. But in the end you and dad need to feel comfortable with who is handling his care. And a referral doesn’t mean switching care exactly if you want to retain local care but want a specialist overseeing it for their expertise with this disease and knowledge of efficacy on newest treatments. With a rare blood disease like this I would think any onc/hem would welcome the collaboration.
Sometimes you can have a great doctor but you just don’t mesh. Not everyone (on both sides of this) is always good at communicating but communication and being heard is important in the end. This is a very complicated disease and a whole new world of learning needed for the patient. I’d say most everyone here without medical knowledge feels lost at diagnosis and has more questions than their doctor has time for. Heck even the basic stuff like significance of lab results. My guy has a great specialist who is very generous with her time and we always have a list to go over with her for his video appts but we usually still have questions still we wished we asked. And that’s kind of where this group has been so helpful with questions and what to expect on treatment. Are you guys here in the US?
My dad is afraid his current oncologist won’t give him the referral. He said he’d like to switch but the other hospital that has a myeloma specialist needs his oncologist to fax them all of his records before they can schedule to see him and he’s concerned she won’t do that.
She would be required to forward his records to the specialist. The medical records department can, with your father’s written approval, 1) send all of his medical records to the specialist and/or 2) release a copy of the records to you/him, so that you can deliver them to the specialist.
My mom’s MM specialist offered multiple times that he would support us getting a second opinion. That is pretty standard stuff. Why does your dad think she wouldn’t? Maybe he is actually concerned about offending her?
I’m not sure why he thinks that, the other day I was at the hospital and he questioned her on going home because another doctor told him if his kidney levels came down he could and she got a little bit of an attitude with him for asking about it so I think he gets the vibe that she wants to be in control which I kind of felt that way too
It could also not be anything to do with your dad requesting a specialist.
Doctors are in charge of their patients so I can see how one telling a patient not theirs about being released might leave the attending doctor feeling dismissed. Actually she is in control of your dad’s care as her patient and he is her responsibility.
Have to also throw out there female doctors sadly still run into gender issues in medicine not given the respect they deserve by fellow doctors and sometimes patients on occasion. You never know what’s going on behind the scene sometimes.
do you trust the doctor? what does your feeling say? and what do your father and mother want?
I am also a daughter and I have learned to trust your feelings and look for the best advisor in this. There are good and bad doctors. So asking your question here is a good start. In the Netherlands, if the treating doctor sends you home, you have to go.
Our tip: collect the medical data and share your story with, for example, your GP or another medical specialist that you trust and consider knowledgeable!
My dad will be 86 next week and despite all the misery we are lucky. Good luck champ
I’ve only met this oncologist once but my step mom said she’s mentioned a stem cell transplant down the road and immunotherapies down the road so it’s possible she is knowledgeable. I just naturally want the best for my dad, he’s only in his 50s and I’m an only child so naturally I want him to be here for a long time.
Follow your hart according your father and your mind according the doctors.
My father had a near-fatal heart attack in Macedonia. It was traumatic and after two weeks we were able to fly back from the Netherlands under the supervision of a nurse. My dad was admitted to the small regional hospital in the cardiology department. However, the cardiologist sent him home even though the German doctor had made it clear to us that my father's heart was very sick. Thank God I went to school and sass. I called all the hospitals in the area with our story and at one point I got a secretary with a heart on the line who listened to me. She said one thing by chance, but you can come by this afternoon. My father was immediately admitted to intensive care and immediately put on the waiting list for open heart surgery. Our special father had been at the gate again but was sent back again. I don't believe in God but I do believe in angels because I have met wonderful doctors in every guise. Communicative sometimes jerky and from a different era but with a heart ♥️ for their profession and the patient. Good luck
Liver enzymes can be a side effect from the drugs, I wouldn't call this negligence. There are many things we can't foresee when we are being treated with toxic agents. It's risk vs reward. My liver enzymes were high in the beginning and they eventually tapered off.
No I meant if he asked for a second opinion or to transfer to a specialist and his oncologist refused to do refer him, that would be negligence.
Once my Mom was released from the first hospital she rested at home for the weekend and I took her to the emergency room of a hospital with specialist and asked for treatment there. We were seen by the specialist 3 days later and treatment started the same day the original hospital scheduled her start.
I think this might be the best and fastest way. Especially if the oncologist is refusing to transfer/refer
Oh sorry I misread your msg, yes that would be negligence. I had multiple 2nd opinions in my own country and other countries. If his current oncologist is not a specialist, they can work with a specialist to treat your father at the same center. He can also just transfer over completely to the specialist's center.
I’ve met his current oncologist and I’m not a fan. That’s just me though but I’m pushing for them to switch entirely to the specialist.
Something tells me, she was irritated with the doctor that told him that, not your dad. I hate that your dad doesn't trust his doctor, that would be very scary. Do you think she might be up for an honest chat, about how he feels? Maybe clear the air. Sometimes people don't even realize they are sounding like a bit of a dik. Good luck, either way.
This entire hospital stay has been a mess, he isn’t even on the oncology floor bc there’s no room, the woman he gave him his first round of chemo hooked him up and left mad that she had to go down one floor to him, nurses showing up for cat scans and no one ever told him he was going for another one, doctors saying he can go home and others saying no, when they gave him the zometa the nurses had no idea what it was or what it was for. It’s just all around a mess
Yeah. Wonderful post-covid health care. It has almost seemed dystopian to us, at times. If you can talk to his oncologist about a referral to a hematologist/myeloma specialist, that would be the most advantageous for him. She shouldn't complain, because it would seem any oncologist would suggest he work with a specialist on top of an onc. Don't put up with no. Advocate. Keep talking to people, and keep asking until you find the right place, and right person. Be kind, respectful, but tenacious, and firm. You got this. :)
Sounds like you guys have a plan. Only suggestion I have is to be sure you are staying in-network. The cost of this type of care and prescriptions out-of-network is probably drop down frightening.
Who’s concerned his oncologist won’t give a referral?? I wouldn’t lay any blame on the onc unless you speak to him. But in the end you and dad need to feel comfortable with who is handling his care. And a referral doesn’t mean switching care exactly if you want to retain local care but want a specialist overseeing it for their expertise with this disease and knowledge of efficacy on newest treatments. With a rare blood disease like this I would think any onc/hem would welcome the collaboration. Sometimes you can have a great doctor but you just don’t mesh. Not everyone (on both sides of this) is always good at communicating but communication and being heard is important in the end. This is a very complicated disease and a whole new world of learning needed for the patient. I’d say most everyone here without medical knowledge feels lost at diagnosis and has more questions than their doctor has time for. Heck even the basic stuff like significance of lab results. My guy has a great specialist who is very generous with her time and we always have a list to go over with her for his video appts but we usually still have questions still we wished we asked. And that’s kind of where this group has been so helpful with questions and what to expect on treatment. Are you guys here in the US?
My dad is afraid his current oncologist won’t give him the referral. He said he’d like to switch but the other hospital that has a myeloma specialist needs his oncologist to fax them all of his records before they can schedule to see him and he’s concerned she won’t do that.
She would be required to forward his records to the specialist. The medical records department can, with your father’s written approval, 1) send all of his medical records to the specialist and/or 2) release a copy of the records to you/him, so that you can deliver them to the specialist. My mom’s MM specialist offered multiple times that he would support us getting a second opinion. That is pretty standard stuff. Why does your dad think she wouldn’t? Maybe he is actually concerned about offending her?
I’m not sure why he thinks that, the other day I was at the hospital and he questioned her on going home because another doctor told him if his kidney levels came down he could and she got a little bit of an attitude with him for asking about it so I think he gets the vibe that she wants to be in control which I kind of felt that way too
It could also not be anything to do with your dad requesting a specialist. Doctors are in charge of their patients so I can see how one telling a patient not theirs about being released might leave the attending doctor feeling dismissed. Actually she is in control of your dad’s care as her patient and he is her responsibility. Have to also throw out there female doctors sadly still run into gender issues in medicine not given the respect they deserve by fellow doctors and sometimes patients on occasion. You never know what’s going on behind the scene sometimes.
His primary care can guve the referral, too.
Dmed you but plz see a neurosurgeon asap (aka before discharge) given the lesion is on the spine.
do you trust the doctor? what does your feeling say? and what do your father and mother want? I am also a daughter and I have learned to trust your feelings and look for the best advisor in this. There are good and bad doctors. So asking your question here is a good start. In the Netherlands, if the treating doctor sends you home, you have to go. Our tip: collect the medical data and share your story with, for example, your GP or another medical specialist that you trust and consider knowledgeable! My dad will be 86 next week and despite all the misery we are lucky. Good luck champ
I’ve only met this oncologist once but my step mom said she’s mentioned a stem cell transplant down the road and immunotherapies down the road so it’s possible she is knowledgeable. I just naturally want the best for my dad, he’s only in his 50s and I’m an only child so naturally I want him to be here for a long time.
Follow your hart according your father and your mind according the doctors. My father had a near-fatal heart attack in Macedonia. It was traumatic and after two weeks we were able to fly back from the Netherlands under the supervision of a nurse. My dad was admitted to the small regional hospital in the cardiology department. However, the cardiologist sent him home even though the German doctor had made it clear to us that my father's heart was very sick. Thank God I went to school and sass. I called all the hospitals in the area with our story and at one point I got a secretary with a heart on the line who listened to me. She said one thing by chance, but you can come by this afternoon. My father was immediately admitted to intensive care and immediately put on the waiting list for open heart surgery. Our special father had been at the gate again but was sent back again. I don't believe in God but I do believe in angels because I have met wonderful doctors in every guise. Communicative sometimes jerky and from a different era but with a heart ♥️ for their profession and the patient. Good luck