My dad had a visit with his oncologist about the results of various tests he had. (I previously posted about my dad's situation here and here.) He had a bone marrow biopsy etc. He has 4 lesions. One on his skull, two on his vertebrae, and one on his scapula.
His doctor's answers kind of stunned him and me as well. He basically said that he is an 'unusual case' as he doesn't have pain and his 'numbers' are right on the line, which means they don't really know where he is at or where it will go.
Has anyone had this experience?
He started infusion to strengthen bones today and the doctor is starting him on chemo soon.He is also starting a steroid right now.
I find this 'vague' prognosis very puzzling. My dad mentioned that he is having pain in his head near the lesion site and sinus trouble etc. He was basically shrugged off and told that we need to focus on treatment right now etc.
This is a bit disturbing to me. I called and left a message saying I would like to talk to him about specifics. I just want to know if this is a common thing or not.confused. :S
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Re: Dad's visit with oncologist for results
Pootren,
What specifically was your Dad "on the line of"?
The bottom line is that by virtue of having multiple lesions, your Dad has symptomatic multiple myeloma, regardless of where his numbers come in. Treatment is called for in this situation.
I believe you mentioned in a previous post that your Dad is seeing a hematologist / oncologist. Note that this doesn't necessarily mean that this doctor is a specialist in multiple myeloma (there are a lot of nuances involved in treating this disease and you really need to be working with a doc that specializes in this specific cancer).
So, if I were to give one piece of advice, it would be to seek out a second opinion from a multiple myeloma specialist before beginning any "chemo" treatment (most of the new drugs really aren't "chemo" in the classic sense). If you let us know where your Dad lives, folks on this forum can likely make some recommendations.
While I'm not a doc, starting out with a bisphosphonate like Zometa (I assume that is what the infusion is) to strengthen his bones seems like a prudent first step to me. I'm really not in a position to comment on starting off with just a steroid before "chemo" and I will leave it to others on the forum to comment on that step.
What specifically was your Dad "on the line of"?
The bottom line is that by virtue of having multiple lesions, your Dad has symptomatic multiple myeloma, regardless of where his numbers come in. Treatment is called for in this situation.
I believe you mentioned in a previous post that your Dad is seeing a hematologist / oncologist. Note that this doesn't necessarily mean that this doctor is a specialist in multiple myeloma (there are a lot of nuances involved in treating this disease and you really need to be working with a doc that specializes in this specific cancer).
So, if I were to give one piece of advice, it would be to seek out a second opinion from a multiple myeloma specialist before beginning any "chemo" treatment (most of the new drugs really aren't "chemo" in the classic sense). If you let us know where your Dad lives, folks on this forum can likely make some recommendations.
While I'm not a doc, starting out with a bisphosphonate like Zometa (I assume that is what the infusion is) to strengthen his bones seems like a prudent first step to me. I'm really not in a position to comment on starting off with just a steroid before "chemo" and I will leave it to others on the forum to comment on that step.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dad's visit with oncologist for results
Pootren - I just want to support you. I can only imagine how frustrating this is and how it must make you feel like you have no control over the situation. I think what Multibilly said is right on target. With multiple myeloma there should always be a second opinion. If there's nothing else you walk away from this from it's to question everything until you understand and get the medical help your father needs. I don't know if your current doctor is doing that or not right now, but you father deserves to receive the best medical care possible.
I hope you get the answers you need soon. So glad you found this forum!
I hope you get the answers you need soon. So glad you found this forum!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Dad's visit with oncologist for results
Hi Pootren,
I'm so sorry to hear about your dad. I think that getting diagnosed and starting treatment is one of the most confusing and terrorizing times with this disease. Most people find that once they have started treatment, their symptoms clear up and they feel much better. Hopefully that will be the case with your dad.
I think it might be helpful if you got copies of all of your dad's test results, so you could see for yourself what is going on. EJ had an M-spike and bone involvement when he was diagnosed, but all of his other tests were pretty munch in a normal range. It could be that one or more your dad's tests have come back high, but not out of the normal range. If his tests show that his kidney function is questionable, it could affect treatment decisions as some drugs are harder on the kidneys than others.
Like your dad, EJ was started on Zometa for his bones before he started treatment for the myeloma. His myeloma was discovered when he had surgery and he needed to heal from that first. I think he had to wait about six weeks to start treatment. While I'd certainly get to the bottom of why your dad isn't being started on treatment right away, I wouldn't jump to a negative conclusion. It could just be that they are jumping through whatever hoops they need to with the insurance company.
Are you able to accompany your dad when he goes to the doctor? Especially at the beginning, this could be helpful for both you and your dad. He is getting so much information thrown at him that it is hard to process it all. Having someone he trusts with him to listen can help cut down on communications problems.
Good luck!
Lyn
I'm so sorry to hear about your dad. I think that getting diagnosed and starting treatment is one of the most confusing and terrorizing times with this disease. Most people find that once they have started treatment, their symptoms clear up and they feel much better. Hopefully that will be the case with your dad.
I think it might be helpful if you got copies of all of your dad's test results, so you could see for yourself what is going on. EJ had an M-spike and bone involvement when he was diagnosed, but all of his other tests were pretty munch in a normal range. It could be that one or more your dad's tests have come back high, but not out of the normal range. If his tests show that his kidney function is questionable, it could affect treatment decisions as some drugs are harder on the kidneys than others.
Like your dad, EJ was started on Zometa for his bones before he started treatment for the myeloma. His myeloma was discovered when he had surgery and he needed to heal from that first. I think he had to wait about six weeks to start treatment. While I'd certainly get to the bottom of why your dad isn't being started on treatment right away, I wouldn't jump to a negative conclusion. It could just be that they are jumping through whatever hoops they need to with the insurance company.
Are you able to accompany your dad when he goes to the doctor? Especially at the beginning, this could be helpful for both you and your dad. He is getting so much information thrown at him that it is hard to process it all. Having someone he trusts with him to listen can help cut down on communications problems.
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: Dad's visit with oncologist for results
Thanks for your responses!
Yes he has started right away. Had an infusion a few days ago and started dexamethasone yesterday.He went to a chemo instruction lab this morning. I feel they are getting started right away. He was just diagnosed a couple of weeks ago and we just did the marrow biopsy last week.
His blood sugar is going up since starting the dexamethasone and my poor dad is trying to get a hold of someone. I think he should just go in but he is pretty stubborn about these things. I think this will be a learning process for him.
I do offer to go to every appointment. I wanted to be there for the results, but the appointment was canceled as he met with my dad spontaneously yesterday. He lives pretty far away and I have two small children. I am still waiting to talk to his oncologist. I have lots of questions but he hasn't returned my calls.
You are right. The beginning is tough, but its comforting to know that it is pretty common.I can see how much of a fight this will be.
I am in Canada, so we pretty much can't get a second opinion. I know some people in the US that have been helpful. I am definitely willing and able to do what we can to get the best treatment available. Education on this is key.
This site is AMAZING and I'm grateful for all of you and your experience
Yes he has started right away. Had an infusion a few days ago and started dexamethasone yesterday.He went to a chemo instruction lab this morning. I feel they are getting started right away. He was just diagnosed a couple of weeks ago and we just did the marrow biopsy last week.
His blood sugar is going up since starting the dexamethasone and my poor dad is trying to get a hold of someone. I think he should just go in but he is pretty stubborn about these things. I think this will be a learning process for him.
I do offer to go to every appointment. I wanted to be there for the results, but the appointment was canceled as he met with my dad spontaneously yesterday. He lives pretty far away and I have two small children. I am still waiting to talk to his oncologist. I have lots of questions but he hasn't returned my calls.
You are right. The beginning is tough, but its comforting to know that it is pretty common.I can see how much of a fight this will be.
I am in Canada, so we pretty much can't get a second opinion. I know some people in the US that have been helpful. I am definitely willing and able to do what we can to get the best treatment available. Education on this is key.
This site is AMAZING and I'm grateful for all of you and your experience
Re: Dad's visit with oncologist for results
Pootren-
Although I don't know much about the healthcare system in Canada, there are many people on the forum who live in Canada and they see myeloma specialists. It seems that there is at least one in each of the provinces. I suggest that you investigate that to see if your father can get a second opinion.
Here in the states people often have to travel distances to see a myeloma specialist, but they continue with seeing their local oncologist as well. The specialist will advise what treatment, tests, etc should be given by the local oncologist and the two of them confer. Appointments with the specialist may only be as little as a couple of times a year.
I hope all begins to go well,
Nancy in Phila
Although I don't know much about the healthcare system in Canada, there are many people on the forum who live in Canada and they see myeloma specialists. It seems that there is at least one in each of the provinces. I suggest that you investigate that to see if your father can get a second opinion.
Here in the states people often have to travel distances to see a myeloma specialist, but they continue with seeing their local oncologist as well. The specialist will advise what treatment, tests, etc should be given by the local oncologist and the two of them confer. Appointments with the specialist may only be as little as a couple of times a year.
I hope all begins to go well,
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: Dad's visit with oncologist for results
Yes Pootren, I would ask where you are in Canada since there are readers here from most of the country (I am in Alberta for example).
I don't really see why you couldn't get a second opinion, although that might in effect mean switching doctors. But perhaps that depends on how large a centre it is where you live, and if there are more than one hematological oncologist there.
Best wishes, I know it's not easy being thrown into a rare blood cancer diagnosis! But I think it is important to find out the names of the drugs your father is taking. I also always had at least one family member come with me to appointments to help me sort through the initial appointments, and so if someone else could go with him that might help too.
I don't really see why you couldn't get a second opinion, although that might in effect mean switching doctors. But perhaps that depends on how large a centre it is where you live, and if there are more than one hematological oncologist there.
Best wishes, I know it's not easy being thrown into a rare blood cancer diagnosis! But I think it is important to find out the names of the drugs your father is taking. I also always had at least one family member come with me to appointments to help me sort through the initial appointments, and so if someone else could go with him that might help too.
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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
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