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Re: Declining health before treatment starts
Joanna, my personal opinion is that it should not take this long. Once the diagnosis is made, treatment should begin. Having said, that, please know chemo will/may cause it's own side effects (nausea, etc). If you go with your dad to the appointments, have written questions and if you have questions later, call the doctor's office. You will be your dad's advocate - he won't be able to - so it's up to you (or whoever his caregiver will be). You've already started by finding this site -- knowledge is power - and the more you have regarding this disease and treatment, the better advocate you will be. Best to you and your dad...remember everyone on this site is here for you and always ready to share what we can. (If it were me, I would call the doctor tomorrow and ask why the delay.) Best wishes to you and your family. Kay
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: Declining health before treatment starts
Thanks, Kay. The only thing I can think of that would cause the delay is maybe they needed the biopsy to make an "official" diagnosis, along with what stage it's at. Maybe? And then treatment will start as soon a we know that? Sigh. I don't know :-/
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Joanna - Name: Joanna
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 59
Re: Declining health before treatment starts
where is he being treated (no probs if you don't want to disclose), perhaps you could phone the Consultant to find out why. I think the biopsy results take a while to come back (> one week)as there are all sorts of things they have to do to it, plus some labs send away to other hospitals. They could be waiting on this before deciding right treatment for him maybe? Also if you are in the UK bear in mind the two week cancer target that all hospitals must adhere to.
Best wishes to your Dad.
Best wishes to your Dad.
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Marnie - Name: Marnie
- Who do you know with myeloma?: My Mum
- When were you/they diagnosed?: 10th March 2011
- Age at diagnosis: 57
Re: Declining health before treatment starts
We're in the Gloucestershire area.
From what I read about the two week rule, it appears to mean no longer than two weeks between a doctor suspecting a cancer and getting the diagnosis. So it's two weeks for all the tests and whatever needs to be done, not including treatment.
I think at first they suspected an upper GI cancer (though I don't know that for sure, but it seems possible based on the tests they did), and those tests started back in January/February, including a gastroscopy, blood tests, x-rays, and a CT scan. The first time the doctor said he suspected myeloma was on March 3rd. The biopsy was March 21st. And next consultation is April 5th. There just doesn't seem to be much sense of urgency.
From what I read about the two week rule, it appears to mean no longer than two weeks between a doctor suspecting a cancer and getting the diagnosis. So it's two weeks for all the tests and whatever needs to be done, not including treatment.
I think at first they suspected an upper GI cancer (though I don't know that for sure, but it seems possible based on the tests they did), and those tests started back in January/February, including a gastroscopy, blood tests, x-rays, and a CT scan. The first time the doctor said he suspected myeloma was on March 3rd. The biopsy was March 21st. And next consultation is April 5th. There just doesn't seem to be much sense of urgency.
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Joanna - Name: Joanna
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 59
Re: Declining health before treatment starts
Joanna-
I know that it's frustrating to you that things seem to be taking a long time, but labs need time to process the specimens and then doctor offices don't necessarily have openings in their schedules as quickly as we would like. When I was sent to an oncologist because it was suspected that there was something wrong, he sent me for a full panel of blood tests and urine testing after my first visit. I had a follow-up appointment a week later. At that appointment he did the biopsy based on the results of my blood work. I had to wait 2 more weeks for an appointment for those results.
Fortunately for me I was diagnosed at the MGUS stage and didn't need treatment at that point. If you feel that your father isn't doing well enough, then take him to emergency or call your doctor's office non-stop until you are satisfied.
I hope that your father gets the help that he needs soon and that he responds well to treatment.
Nancy
I know that it's frustrating to you that things seem to be taking a long time, but labs need time to process the specimens and then doctor offices don't necessarily have openings in their schedules as quickly as we would like. When I was sent to an oncologist because it was suspected that there was something wrong, he sent me for a full panel of blood tests and urine testing after my first visit. I had a follow-up appointment a week later. At that appointment he did the biopsy based on the results of my blood work. I had to wait 2 more weeks for an appointment for those results.
Fortunately for me I was diagnosed at the MGUS stage and didn't need treatment at that point. If you feel that your father isn't doing well enough, then take him to emergency or call your doctor's office non-stop until you are satisfied.
I hope that your father gets the help that he needs soon and that he responds well to treatment.
Nancy
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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: Declining health before treatment starts
Hi everyone.
Sadly, my father passed away last night. He said he has blacked out earlier during the day and was generally feeling much weaker. He called the doctor in the afternoon and said he was feeling worse, and the doctor said he should go in for another blood test that day. My dad explained that he had X-rays booked for the following day and didn't think he was strong enough to go out two days in a row. So the doctor booked him in for a blood test the following day along with his X-ray.
Later on in the evening dad was trying to tell my brother and I how he'd been during the day, as we'd both been out for a while. But he then suffered what the paramedics say was a cardiac arrest. They managed to get him breathing on his own for a while but he deteriorated in the ambulance and they were unable to resuscitate him.
I am hurt and angry that nothing was done about his illness before it was too late. My mother died when I was young. My brother and I now have no parents.
I just don't understand.
Sadly, my father passed away last night. He said he has blacked out earlier during the day and was generally feeling much weaker. He called the doctor in the afternoon and said he was feeling worse, and the doctor said he should go in for another blood test that day. My dad explained that he had X-rays booked for the following day and didn't think he was strong enough to go out two days in a row. So the doctor booked him in for a blood test the following day along with his X-ray.
Later on in the evening dad was trying to tell my brother and I how he'd been during the day, as we'd both been out for a while. But he then suffered what the paramedics say was a cardiac arrest. They managed to get him breathing on his own for a while but he deteriorated in the ambulance and they were unable to resuscitate him.
I am hurt and angry that nothing was done about his illness before it was too late. My mother died when I was young. My brother and I now have no parents.
I just don't understand.
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Joanna - Name: Joanna
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 59
Re: Declining health before treatment starts
Hello Joanna,
Everyone here at The Myeloma Beacon is very sad to hear of your father's passing. Please accept our sincere condolences.
We realize that this is a tremendous loss for you, your brother, and everyone else who was close to your father. We hope, though, that you will be able to gain strength and comfort from one another and from other friends and family you are close to.
All of us here in the Beacon community are here if you need us, and we are thinking of you and wishing you the best.
- Boris.
Everyone here at The Myeloma Beacon is very sad to hear of your father's passing. Please accept our sincere condolences.
We realize that this is a tremendous loss for you, your brother, and everyone else who was close to your father. We hope, though, that you will be able to gain strength and comfort from one another and from other friends and family you are close to.
All of us here in the Beacon community are here if you need us, and we are thinking of you and wishing you the best.
- Boris.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Declining health before treatment starts
Joanna: My heart breaks for you, and your brother, and for a situation that may well have been unnecessary.
Please know when one of us dies, because of this terrible disease, the rest of us cry with you.
May you find some peace and understanding.
Fondly,
Sarah
Please know when one of us dies, because of this terrible disease, the rest of us cry with you.
May you find some peace and understanding.
Fondly,
Sarah
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: Declining health before treatment starts
I am very sorry for your loss, Joanna, and I can only echo the thoughts and comments of Sarah and Boris. May you find the strength, warmth, and caring that you need right now, and know that we all are wishing you the best.
Re: Declining health before treatment starts
Joanna, I'm so sorry to hear your Dad, what a terrible loss to you and your brother.
You are in my thoughts ... x
You are in my thoughts ... x
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Marnie - Name: Marnie
- Who do you know with myeloma?: My Mum
- When were you/they diagnosed?: 10th March 2011
- Age at diagnosis: 57
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