I just learned that what started out as a strained back muscle is multiple myeloma. My dad is only 69 and in good health, but his back was getting worse. He injured it cutting trees down Memorial Day weekend. Since then he has had tons of tests which showed low enzymes for liver and kidneys, his x-ray showed something on his hip, he had a follow up scan with dye yesterday, and will have another next Friday.
I don't know what any of this means. My mom is very vague as they are shocked and devastated. He is my everything! I love him so much, I am so scared.
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Mar dog - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 7/1/2016
- Age at diagnosis: 68
Re: Scared - father diagnosed with multiple myeloma
I'm sorry to hear about your father's diagnosis, Mar dog. I hope his myeloma responds well to the treatment he receives.
Your father's doctors will determine how urgent it is for his multiple myeloma to be treated right away. Given that he has had back issues, it is very likely he has some bone damage from the disease, which means he also may have other symptoms, such as anemia or kidney problems. In that case, the doctors will want to get him started on some sort of treatment right away.
Regardless of whether he is started soon on treatment, it would be a good idea to encourage your father to see a multiple myeloma specialist sometime in the near future, if he isn't already being seen by a myeloma specialists. Your standard hematologist-oncologist is usually not a myeloma specialist. A myeloma specialist is usually based at a cancer center, sees only patients with multiple myeloma and other plasma cell disorders, and usually does regular research related to multiple myeloma.
If you are not sure if your father is being seen by a myeloma specialist, people here in the forum can let you know of treatment centers with myeloma specialists who are near to you, if you give us an idea of where you are located. There is also a list of U.S. myeloma treatment centers here:
https://myelomabeacon.org/resources/treatment-centers/
I also would encourage your mother and father to get familiar with the Beacon and this forum, because there is so much that they will need to learn about multiple myeloma, and it is really them – not you – who must learn this information.
Make sure they get familiar with how to use the site and forum search boxes (tip: use single keywords – like "neuropathy", "Revlimid", etc.) and also make sure you and they know about this posting with lots of helpful links to forum discussions about treatments and side effects:
"Useful links to existing forum discussions"
(The forum discussion with this posting is always the first discussion in the "Treatments & Side Effects" section of the forum.)
Good luck!
Your father's doctors will determine how urgent it is for his multiple myeloma to be treated right away. Given that he has had back issues, it is very likely he has some bone damage from the disease, which means he also may have other symptoms, such as anemia or kidney problems. In that case, the doctors will want to get him started on some sort of treatment right away.
Regardless of whether he is started soon on treatment, it would be a good idea to encourage your father to see a multiple myeloma specialist sometime in the near future, if he isn't already being seen by a myeloma specialists. Your standard hematologist-oncologist is usually not a myeloma specialist. A myeloma specialist is usually based at a cancer center, sees only patients with multiple myeloma and other plasma cell disorders, and usually does regular research related to multiple myeloma.
If you are not sure if your father is being seen by a myeloma specialist, people here in the forum can let you know of treatment centers with myeloma specialists who are near to you, if you give us an idea of where you are located. There is also a list of U.S. myeloma treatment centers here:
https://myelomabeacon.org/resources/treatment-centers/
I also would encourage your mother and father to get familiar with the Beacon and this forum, because there is so much that they will need to learn about multiple myeloma, and it is really them – not you – who must learn this information.
Make sure they get familiar with how to use the site and forum search boxes (tip: use single keywords – like "neuropathy", "Revlimid", etc.) and also make sure you and they know about this posting with lots of helpful links to forum discussions about treatments and side effects:
"Useful links to existing forum discussions"
(The forum discussion with this posting is always the first discussion in the "Treatments & Side Effects" section of the forum.)
Good luck!
Re: Scared - father diagnosed with multiple myeloma
Terry,
Thank you for taking time to help me. Unfortunately my dad had to go into the ER as his heart was having complications, 24 hours later we are finally back to sinus rhythm. He has not received the results of his scans and his primary physician is saying it will take until July 8th to see an oncologist. This seems crazy to me! He is deteriorating and in severe abdominal pain. His liver and kidney enzymes are back to normal, good blood pressure, but no appetite and swollen abdominal with lots of pain. I am losing it, I am so frightened. I have read about all of this hope and treatments, but they aren't doing anything!
Thank you for taking time to help me. Unfortunately my dad had to go into the ER as his heart was having complications, 24 hours later we are finally back to sinus rhythm. He has not received the results of his scans and his primary physician is saying it will take until July 8th to see an oncologist. This seems crazy to me! He is deteriorating and in severe abdominal pain. His liver and kidney enzymes are back to normal, good blood pressure, but no appetite and swollen abdominal with lots of pain. I am losing it, I am so frightened. I have read about all of this hope and treatments, but they aren't doing anything!
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Mar dog - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 7/1/2016
- Age at diagnosis: 68
Re: Scared - father diagnosed with multiple myeloma
Hi Mar dog.
Are the doctors convinced the abdominal pain is related to multiple myeloma and not to something else?
I ask because I've never heard of anyone newly diagnosed with multiple myeloma having that as a symptom.
Are the doctors convinced the abdominal pain is related to multiple myeloma and not to something else?
I ask because I've never heard of anyone newly diagnosed with multiple myeloma having that as a symptom.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Scared - father diagnosed with multiple myeloma
The abdominal pain was really flank pain, I misunderstood my dad. They have now determined there are lytic lesions on his skull and neck. He has also become diabetic through all of this. So much at once. The oncologist finally came to see him in the hospital. She believes it is Stage III. I am so scared. Is there any hope?
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Mar dog - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 7/1/2016
- Age at diagnosis: 68
Re: Scared - father diagnosed with multiple myeloma
Mar Dog, of course there is hope! I'm stage 3 and I've been in remission for the past 18 months and off all treatment, except for a bone strengthener, for the past 13 months.
I didn't have lesions on diagnosis and have never heard of anyone with heart issues on diagnosis either, so I can't really comment on those symptoms. However, when I started treatment, it was after all the test results were in. Last year when I needed a colonoscopy, the surgeon preferred to wait a month until I was off chemo.
From your posts, it seems not all your tests are in, your father may not be fully stable yet, and it's possible surgery might be needed. Once chemo is decided upon as a treatment, there shouldn't be any more waiting. I started chemo two days after my last test.
How your father responds to treatment is key. I responded very quickly to Velcade and dex. Some don't do so as quickly or as well. Still others don't respond at all and will be switched to another treatment. I don't think doctors can tell in advance how a particular patient will respond to a particular drug.
I didn't have lesions on diagnosis and have never heard of anyone with heart issues on diagnosis either, so I can't really comment on those symptoms. However, when I started treatment, it was after all the test results were in. Last year when I needed a colonoscopy, the surgeon preferred to wait a month until I was off chemo.
From your posts, it seems not all your tests are in, your father may not be fully stable yet, and it's possible surgery might be needed. Once chemo is decided upon as a treatment, there shouldn't be any more waiting. I started chemo two days after my last test.
How your father responds to treatment is key. I responded very quickly to Velcade and dex. Some don't do so as quickly or as well. Still others don't respond at all and will be switched to another treatment. I don't think doctors can tell in advance how a particular patient will respond to a particular drug.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Scared - father diagnosed with multiple myeloma
Mar dog,
The stage of myeloma doesn't matter as much as with other cancers; it more has to do with symptoms and organ involvement, etc. Stage III myeloma doesn't mean imminent death by any means, especially if you live in the developed world (noticed you mention "Memorial Day", so you must be in the U.S. somewhere). However, there is no cure for myeloma at this time, but it is treatable.
Like TerryH said, your father should see a myeloma specialist in addition to a regular hematologist.
The stage of myeloma doesn't matter as much as with other cancers; it more has to do with symptoms and organ involvement, etc. Stage III myeloma doesn't mean imminent death by any means, especially if you live in the developed world (noticed you mention "Memorial Day", so you must be in the U.S. somewhere). However, there is no cure for myeloma at this time, but it is treatable.
Like TerryH said, your father should see a myeloma specialist in addition to a regular hematologist.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Scared - father diagnosed with multiple myeloma
Thank you for you response. The following are my Dad's numbers. He is scheduled to start chemo on Wednesday. He is worried his platelets are too low to start. Any feedback on this is greatly appreciated! My folks are trying to stay off the Internet, so my sister and I (both in our 40s) are here helping guide them through all of this.
Kappa Lambda 628.571
Kappa Free Light Chain 132
Lambda Free Light Chain 0.21 L
Platelet of 92 L
Thank you all!
Mar Dog
Kappa Lambda 628.571
Kappa Free Light Chain 132
Lambda Free Light Chain 0.21 L
Platelet of 92 L
Thank you all!
Mar Dog
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Mar dog - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 7/1/2016
- Age at diagnosis: 68
Re: Scared - father diagnosed with multiple myeloma
Hi Mar Dog,
Is it just your dad that is worried about his platelets being too low, or is his doctor also worried?
If the platelet reading you posted is 92,000 / mm3, that only sounds like grade 1 thrombocytopenia (thrombocytopenia = low platelet levels). Doctors get concerned when you hit grade 3 and 4 thrombocytopenia while on various multiple myeloma drugs like Revlimid and Velcade. In any case, the docs will closely monitor his platelet levels via ongoing CBC tests and will see how much his platelet level drops from the baseline of 92,000 / mm3. If his platelet level drops too much, the docs will either dial down or temporarily interrupt the use of the culprit drug. The acceptable thresholds for platelet levels during chemo are well documented in a drug's official prescribing information ("label", "monograph").
Is it just your dad that is worried about his platelets being too low, or is his doctor also worried?
If the platelet reading you posted is 92,000 / mm3, that only sounds like grade 1 thrombocytopenia (thrombocytopenia = low platelet levels). Doctors get concerned when you hit grade 3 and 4 thrombocytopenia while on various multiple myeloma drugs like Revlimid and Velcade. In any case, the docs will closely monitor his platelet levels via ongoing CBC tests and will see how much his platelet level drops from the baseline of 92,000 / mm3. If his platelet level drops too much, the docs will either dial down or temporarily interrupt the use of the culprit drug. The acceptable thresholds for platelet levels during chemo are well documented in a drug's official prescribing information ("label", "monograph").
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Scared - father diagnosed with multiple myeloma
Good news, my father's platelets are back up, but now his bilirubin is high. He is so worried about being able to start chemo tomorrow. The RN said he may not be able to. Does anyone have any experience with this?
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Mar dog - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 7/1/2016
- Age at diagnosis: 68
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