Hi all,
I'm new to this site and have some general questions.
My dad has recently been diagnosed with multiple myeloma and, to be honest, we are all still in shock! At the moment, he is in quite a bit of pain and finding pain management difficult. He is also feeling nauseous and has lost his appetite after starting initial treatment. At this point, I'm not sure if we have found the right haematologist in terms of our relationship with him. It just doesn't seem to be the right fit.
Dad wants to know more about his condition and his treatment, but I feel as though the specifics are being kept from him. He hasn't even given him a printout of any of the results from testing etc.
We are unsure of who to ask about basics questions - i.e., how to deal with pain and try new pain relief when others aren't working. I don't feel that he has a good quality of life at the moment, and I have read about so many of you that live with a really good standard of living, which is fantastic!
My question is: How important is it to find the right doctor for you? Have people looked around and swapped doctors to find someone that suits their own personal approach?
Any help you could give us would be really appreciated!
I am feeling really positive after reading so many great stories of people living with myeloma for many years on this site, so I thank you for that!
Forums
Re: Supporting my dad - recently diagnosed in Australia
Esimp,
Your dad should be in a position where he has easy access to his records (he is legally entitled to them in the USA) and gets clear and helpful follow-up advice and treatment from the doctor and his staff.
In fact, finding the right doctor and one who is a top specialist in the multiple myeloma field is probably the single most important thing one can be doing to successfully fight this disease (you will hear that time and again on this forum). There is absolutely nothing wrong with swapping docs and/or getting a second opinion.
If you let us know where your dad is located, folks on this forum can point you to some institutions and/or specific doctors to help your dad.
Your dad should be in a position where he has easy access to his records (he is legally entitled to them in the USA) and gets clear and helpful follow-up advice and treatment from the doctor and his staff.
In fact, finding the right doctor and one who is a top specialist in the multiple myeloma field is probably the single most important thing one can be doing to successfully fight this disease (you will hear that time and again on this forum). There is absolutely nothing wrong with swapping docs and/or getting a second opinion.
If you let us know where your dad is located, folks on this forum can point you to some institutions and/or specific doctors to help your dad.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Supporting my dad - recently diagnosed in Australia
Thanks for your reply, Mutibilly.
I think the haematologist is quite well regarded and is probably very good. However, on a personal level, I'm not sure that dad feels comfortable talking with him or asking a lot of questions. And he is a bit too polite for his own good and doesn't want to be pushy!
We are in Adelaide, South Australia, so if anyone has any advice about specific specialists we could try, that would be great.
I think that the relationship between patient and doctor is really important and I will be encouraging dad to 'shop around' a bit to find someone that fits well with him and allows him to feel in control of his treatment more.
Thanks again,
E
I think the haematologist is quite well regarded and is probably very good. However, on a personal level, I'm not sure that dad feels comfortable talking with him or asking a lot of questions. And he is a bit too polite for his own good and doesn't want to be pushy!
We are in Adelaide, South Australia, so if anyone has any advice about specific specialists we could try, that would be great.
I think that the relationship between patient and doctor is really important and I will be encouraging dad to 'shop around' a bit to find someone that fits well with him and allows him to feel in control of his treatment more.
Thanks again,
E
Re: Supporting my dad - recently diagnosed in Australia
Understood. It sounds like your dad may need to be a bit more assertive as well 
BTW, I have no idea how it works in Australia, but in the USA, these specialists usually have very capable nurses that assist them. These nurses can be an incredibly valuable source of information (records, issues with pain, etc) and an additional way to get questions to a doctor.
BTW, I have no idea how it works in Australia, but in the USA, these specialists usually have very capable nurses that assist them. These nurses can be an incredibly valuable source of information (records, issues with pain, etc) and an additional way to get questions to a doctor.-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Supporting my dad - recently diagnosed in Australia
Hi E,
Can you or a family member go with your dad to his appointments? The initial diagnosis, start of treatment, etc. is extremely overwhelming and your dad may just be having a hard time taking it all in. One of the other things you'll see talked about on this forum is the importance of having someone accompany you to appointments, to listen to what is being said, and to ask questions when things are unclear.
Things usually settle down after a few months, and the treatments have there own rhythm, which makes things easier.
Good luck!
Lyn
Can you or a family member go with your dad to his appointments? The initial diagnosis, start of treatment, etc. is extremely overwhelming and your dad may just be having a hard time taking it all in. One of the other things you'll see talked about on this forum is the importance of having someone accompany you to appointments, to listen to what is being said, and to ask questions when things are unclear.
Things usually settle down after a few months, and the treatments have there own rhythm, which makes things easier.
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: Supporting my dad - recently diagnosed in Australia
Hi E,
As the relationship with the haematologist can last for years it really is a good idea to find one that you can get on with. At the same time you do want one that is good. I live near Ballarat, Victoria my medical team consists of:
Local GP - I see her every ~2 months (if I am well) to update her on my treatment, get new prescriptions. She would be the one I would go to for pain management (at this stage in my multiple myeloma journey). She would advise on counselling if it is needed etc. I think it is absolutely essential that you have a good GP/med centre that will find an appointment for you if you need one on any given day.
Local oncologist - When I was having Velcade, Zometa, etc. I would see my local oncologist here in Ballarat. My local haematologist/oncologist referred me to a myeloma specialist in Melbourne.
Melbourne Myeloma specialist(s) - I see the myeloma specialist every ~2 months.
I have a great med team - the local oncologist knows my GP & one of the myeloma specialists very well (social & business). It has worked well for me.
It is early days for your father, he is probably still in shock - in the short term get his pain under control (maybe see his GP) & look around for a myeloma specialist.
All the best for you, your dad & the rest of your family,
Libby
As the relationship with the haematologist can last for years it really is a good idea to find one that you can get on with. At the same time you do want one that is good. I live near Ballarat, Victoria my medical team consists of:
Local GP - I see her every ~2 months (if I am well) to update her on my treatment, get new prescriptions. She would be the one I would go to for pain management (at this stage in my multiple myeloma journey). She would advise on counselling if it is needed etc. I think it is absolutely essential that you have a good GP/med centre that will find an appointment for you if you need one on any given day.
Local oncologist - When I was having Velcade, Zometa, etc. I would see my local oncologist here in Ballarat. My local haematologist/oncologist referred me to a myeloma specialist in Melbourne.
Melbourne Myeloma specialist(s) - I see the myeloma specialist every ~2 months.
I have a great med team - the local oncologist knows my GP & one of the myeloma specialists very well (social & business). It has worked well for me.
It is early days for your father, he is probably still in shock - in the short term get his pain under control (maybe see his GP) & look around for a myeloma specialist.
All the best for you, your dad & the rest of your family,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Supporting my dad - recently diagnosed in Australia
Thanks so much Libby, that is such great information to have! You have totally made my day!
Looking forward to catching up with dad tonight and working towards a good strategy for him.
Thank you so much for taking the time to reply, I really appreciate it.
E
Looking forward to catching up with dad tonight and working towards a good strategy for him.
Thank you so much for taking the time to reply, I really appreciate it.
E
Re: Supporting my dad - recently diagnosed in Australia
There are quite a few people who post on the forum who live in Australia. So, hopefully they will respond. Libby has given you some very good information about how she is managing her myeloma in Australia. In addition to having someone accompany your father to his appointments, one of the other things that people find helpful is to tape record the doctor visits so that you can review the information later. Of course you have to get the doctor's permission to do this.
You may want to find out if there are any support groups within a reasonable distance to you. They are very helpful in that you meet others who are living with myeloma, newly diagnosed and veterans of the disease, and learning more about the disease. Consulting your GP about pain control is a really good idea. Also, let us know what treatment regimen your father is on. It might need to be adjusted if he is feeling so badly. Usually people begin to feel better after a few cycles of treatment and the m-spike begins to decrease and the other blood values begin to normalize.
If your father is having bone pain from the myeloma and has lesions or breaks in the bones, is he getting an infusion of bisphosphonates, Zometa or Aredia, for the bones. These infusions usually begin to help the bone pain as does the myeloma treatment itself. I had a humeral fracture that led to my myeloma being changed to active and starting treatment. About 3 weeks after beginning treatment with Revlimid 15 mg 21 days on and 7 days off, dexamethasone 40 mg once per week and monthly Zometa infusions, the fracture pain began to diminish.
All the best to your father and your family,
Nancy in Phila
You may want to find out if there are any support groups within a reasonable distance to you. They are very helpful in that you meet others who are living with myeloma, newly diagnosed and veterans of the disease, and learning more about the disease. Consulting your GP about pain control is a really good idea. Also, let us know what treatment regimen your father is on. It might need to be adjusted if he is feeling so badly. Usually people begin to feel better after a few cycles of treatment and the m-spike begins to decrease and the other blood values begin to normalize.
If your father is having bone pain from the myeloma and has lesions or breaks in the bones, is he getting an infusion of bisphosphonates, Zometa or Aredia, for the bones. These infusions usually begin to help the bone pain as does the myeloma treatment itself. I had a humeral fracture that led to my myeloma being changed to active and starting treatment. About 3 weeks after beginning treatment with Revlimid 15 mg 21 days on and 7 days off, dexamethasone 40 mg once per week and monthly Zometa infusions, the fracture pain began to diminish.
All the best to your father and your family,
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: Supporting my dad - recently diagnosed in Australia
Hi Nancy,
Thanks so much for your encouragement.
Dad had his first round of Zometa last Friday (a little over a week ago). He is feeling better as far as the appetite and nausea that were an issue earlier in the week, but has had issues with back pain. He continues to get bad back spasm and today hasn't been able to get up from lying down most of the day.
He has taken some Endone (oxycodone) for pain treatment, and this afternoon had some Valium, as I don't think it was really helping that much. The Valium has helped the pain a little bit, but he is quite drowsy.
I know he has tried another couple of drugs, but doesn't like feeling 'out of it'. I'm not sure we have found the right pain management system yet.
Has anyone got any advice? We are in Australia, so would be great to get some local advice.
Many thanks,
E
Thanks so much for your encouragement.
Dad had his first round of Zometa last Friday (a little over a week ago). He is feeling better as far as the appetite and nausea that were an issue earlier in the week, but has had issues with back pain. He continues to get bad back spasm and today hasn't been able to get up from lying down most of the day.
He has taken some Endone (oxycodone) for pain treatment, and this afternoon had some Valium, as I don't think it was really helping that much. The Valium has helped the pain a little bit, but he is quite drowsy.
I know he has tried another couple of drugs, but doesn't like feeling 'out of it'. I'm not sure we have found the right pain management system yet.
Has anyone got any advice? We are in Australia, so would be great to get some local advice.
Many thanks,
E
Re: Supporting my dad - recently diagnosed in Australia
Hi,
I am in Sydney, and my wife is the patient.
We get copies of all her bloods, scans, bone marrow biopsies etc. I do a spreadsheet of these results so we can monitor any change in her numbers.
While it is important to have a great relationship with all your doctors, it is also vital to keep on top of it all yourself (or get a family member to do it). We both research and ask questions all the time.
The hardest thing is in what we read here on the Beacon or elsewhere on the Internet sometimes doesn't apply here as we don't have access to a lot of drugs that are available in the US. We on the other hand are very fortunate to have Medicare and little out-of-pocket expenses.
I wish your dad all the best and remember to ask as many questions as you like.
Regards,
John
I am in Sydney, and my wife is the patient.
We get copies of all her bloods, scans, bone marrow biopsies etc. I do a spreadsheet of these results so we can monitor any change in her numbers.
While it is important to have a great relationship with all your doctors, it is also vital to keep on top of it all yourself (or get a family member to do it). We both research and ask questions all the time.
The hardest thing is in what we read here on the Beacon or elsewhere on the Internet sometimes doesn't apply here as we don't have access to a lot of drugs that are available in the US. We on the other hand are very fortunate to have Medicare and little out-of-pocket expenses.
I wish your dad all the best and remember to ask as many questions as you like.
Regards,
John
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Anonymous
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