Hello everyone. Am a new member here.
I've read some of topics and got encouraged to share my dad's journey and hopefully I can get your opinions about it.
So my dad is 56. He used to be a heavy smoker with a long diabetic history that he didn't care to look after. Since I was a child I've always seen my dad in pain. However, in this year 2015 (last 3 months), he started to say he has severe back pain. After several checkups and stuff, the doctors we went to thought its high stress and weight problem as he is obese. So they gave us vitamins and the useless stuff when they don't know what's going on.
Later (1 month) his movements became very heavy and he developed some worrying symptoms like loss of control of feet when walking and falling, lost of appetite, lack of sleep, high sensitivity to anything and many more. We went to a fancy hospital where they thought my dad has cancer after an MRI, which my dad refused to believe, and went to another hospital where they told him he has disc infection and requires a surgery to remove the infection.
After the surgery, they collected some samples and tested them. They discovered he has multiple myeloma. After the surgery, he went home and started to exercise and fixed his diet, hoping for a new life. He began to become worse and worse. Now he can barely breathe. He cannot walk – not even take sides on bed and his chest, ribs, pelvis and back extremely paining him. As I speak now he is in front of me lying on bed sleeping and doing some tests and stuff in a specialized cancer hospital. Tomorrow we will do him a bone marrow biopsy.
I am just left confused. I don't know what to do, how long he will be with us. I wish i could hear your "HONEST" opinions, expectations and insights.
Thank you
Forums
8 posts
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Re: Insights & opinions about my father's situation?
Starlight,
Has your father started chemo?
Has your father started chemo?
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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: Insights & opinions about my father's situation?
No he hasn't, but his doctor said we will try some cocktail of medicine, among them will be chemo. If it doesn't work, we'll go for a stem cell transplant. That's what he said.
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Starlight55
Re: Insights & opinions about my father's situation?
Without having more information other than what one doctor told about having multiple myeloma it is hard to respond to you adequately. But, the bone marrow biopsy will show what percentage of myeloma is in his marrow and they also should be doing genetic testing of the marrow to see if there are any abnormalities related to myeloma. Have they done blood tests such as CBC, chem screen, free light chain test, serum electrophoresis (SPEP) and a 24-hour urine test? From all of the pain complaints, he should probably have a full body MRI and/or PET/CT scans to check for bone lesions throughout his body.
The results of the tests will inform the doctor on what will be the best way to approach your father's disease. There are many ways that treatment may be started. Often the first line of treatment is a 2, or 3, drug combination which may include Revlimid and Velcade, or Velcade and Cytoxan, both with dexamethasone.
Revlimid and Velcade are targeted therapies, so they don't have the types of side effects that you might know about from other cancers. Revlimid is a daily pill and Velcade is usually an injection done once or twice a week at the cancer center. Cytoxan also is usually a pill.
Dexamethasone may be started at 40 mg for 4 days and then reduced to 40 mg once a week. Dexamethasone does have a number of side effects that can be difficult to deal with and, since your father is diabetic, this will have to be monitored closely. Dexamethasone is a steroid that can raise blood sugars.
If he has multiple bone lesions, which it sounds like he does, he should also be started on a bisphosphonate to strengthen his bones. The 2 that are used are Zometa or Aredia which are both infusions done once a month to start with.
Depending on how advanced your father's myeloma is and what his bone marrow shows, there is a possibility that he will respond well to treatment and do well. Many people are in really terrible shape when they are diagnosed and when treated respond really well. Unfortunately, there are also some people who don't respond well to treatment. The most important part right now is getting a full diagnosis and picture of your father's myeloma, getting him started on treatment ASAP and seeing how it goes.
Hopefully he is being seen by an oncologist who only treats people with myeloma now. If not, continue with where he is going now and then look for a myeloma specialist near where he lives. Let us know where he is located and we can give you the names of some places and oncologists to contact.
I hope that your father gets the treatment that he needs and begins to improve,
Nancy in Phila
The results of the tests will inform the doctor on what will be the best way to approach your father's disease. There are many ways that treatment may be started. Often the first line of treatment is a 2, or 3, drug combination which may include Revlimid and Velcade, or Velcade and Cytoxan, both with dexamethasone.
Revlimid and Velcade are targeted therapies, so they don't have the types of side effects that you might know about from other cancers. Revlimid is a daily pill and Velcade is usually an injection done once or twice a week at the cancer center. Cytoxan also is usually a pill.
Dexamethasone may be started at 40 mg for 4 days and then reduced to 40 mg once a week. Dexamethasone does have a number of side effects that can be difficult to deal with and, since your father is diabetic, this will have to be monitored closely. Dexamethasone is a steroid that can raise blood sugars.
If he has multiple bone lesions, which it sounds like he does, he should also be started on a bisphosphonate to strengthen his bones. The 2 that are used are Zometa or Aredia which are both infusions done once a month to start with.
Depending on how advanced your father's myeloma is and what his bone marrow shows, there is a possibility that he will respond well to treatment and do well. Many people are in really terrible shape when they are diagnosed and when treated respond really well. Unfortunately, there are also some people who don't respond well to treatment. The most important part right now is getting a full diagnosis and picture of your father's myeloma, getting him started on treatment ASAP and seeing how it goes.
Hopefully he is being seen by an oncologist who only treats people with myeloma now. If not, continue with where he is going now and then look for a myeloma specialist near where he lives. Let us know where he is located and we can give you the names of some places and oncologists to contact.
I hope that your father gets the treatment that he needs and begins to improve,
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: Insights & opinions about my father's situation?
Thank you so much Nancy for your thorough comment!
As for the tests and stuff, he did all the ones you mentioned except for the bone marrow biopsy, which will be done tomorrow by my father's doctor (he is a good oncologist, I hope). As soon as I get the results and stuff, I'll share it with you.
Thank you for your concern, i feel relieved for having this talk.
As for the tests and stuff, he did all the ones you mentioned except for the bone marrow biopsy, which will be done tomorrow by my father's doctor (he is a good oncologist, I hope). As soon as I get the results and stuff, I'll share it with you.
Thank you for your concern, i feel relieved for having this talk.
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Starlight55
Re: Insights & opinions about my father's situation?
Hi Starlight,
I would just like to second Nancy's suggestion that your Dad be seen by a myeloma specialist. This beast called myeloma is a bit unusual and unless an oncologist is specialized in myeloma, they may not be giving him the best options for treatment.
If he likes this oncologist and there is not a myeloma specialist there in your town, many have used a specialist out of town who collaborates/communicates with the local doc without issues.
Once treatment is started, the pain should diminish. Also he can ask about radiation which helped my back pain tremendously.
I'm glad your Dad has you there to help him through this and gather information to make the best decisions. It's overwhelming and sometimes complicated, so we are here to help.
God bless you! BN
I would just like to second Nancy's suggestion that your Dad be seen by a myeloma specialist. This beast called myeloma is a bit unusual and unless an oncologist is specialized in myeloma, they may not be giving him the best options for treatment.
If he likes this oncologist and there is not a myeloma specialist there in your town, many have used a specialist out of town who collaborates/communicates with the local doc without issues.
Once treatment is started, the pain should diminish. Also he can ask about radiation which helped my back pain tremendously.
I'm glad your Dad has you there to help him through this and gather information to make the best decisions. It's overwhelming and sometimes complicated, so we are here to help.
God bless you! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Insights & opinions about my father's situation?
When they finally figured out what was wrong with me, the pain was unbearable. No drugs would stop it. I was taking oxy and morphine in huge doses, and it still did not stop my pain.
But then they started me on a treatment of chemo, and in no time flat, the pain started to subside.
So here's to praying when they start your dad on chemo, he'll get the same relief from the pain I did.
But then they started me on a treatment of chemo, and in no time flat, the pain started to subside.
So here's to praying when they start your dad on chemo, he'll get the same relief from the pain I did.
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
Re: Insights & opinions about my father's situation?
Get a myeloma specialist now please. It is so important, you just have no idea. Multiple myeloma is VERY complicated and advice here is helpful but it is not enough.
Tell this group where you live and we will find you a specialist, or a few to choose from!
Tell this group where you live and we will find you a specialist, or a few to choose from!
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Bluemountain
8 posts
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