I have been reading so much here that I truly believe I could be a doctor!!
I am a bit OCD, as I have always believed knowledge is power. My husband, who was diagnosed two weeks ago and met with his oncologist last Wednesday, has told me to stay away from the computer, and I am beginning to believe perhaps it is true.
I know this cancer is not curable, but with treatment I have been led to believe that a near normal life can be had. My husband is extremely active. He is 69, fishes, hunts, does yard work, etc. As I stated prior, he was going in for minor throat surgery and they discovered through his blood work that his kidneys were not doing what they were suppose to be doing, yada yada yada. Moving along, he is schedule for a bone biopsy this next Wednesday and I insist on sedation.
I guess what I am trying to say here, and please no offense, but I want to read some good news -- not all doom and gloom. Yes, my husband may be sick -- to what extent we do not know yet. But this morning when we got up we felt our heart beat and thought, okay, my heart is beating, so I have a purpose.
Please can someone share some good news here?
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Re: I need smiles ...
Mildred,
I don't have active myeloma and am watching and waiting at present, but I thought I would offer some encouragement.
While there are many variables with this disease that decide whether it is high, intermediate, or low risk, there are many people here who have been living very full, happy lives for 10,15 and 20+ years.
Your post doesn't have specifics and I am not a doctor, so even if it did, I would not speculate. What I do know about this disease is that every case is unique, and one person's course can be very different from the next. Please take comfort in knowing it is not necessarily a death sentence or a future of poor quality of life because your husband has been diagnosed. Not curable does not mean not living.
Hope things go well with the biopsy and you get some good answers and peace soon! I will be praying for you and your husband.
I don't have active myeloma and am watching and waiting at present, but I thought I would offer some encouragement.
While there are many variables with this disease that decide whether it is high, intermediate, or low risk, there are many people here who have been living very full, happy lives for 10,15 and 20+ years.
Your post doesn't have specifics and I am not a doctor, so even if it did, I would not speculate. What I do know about this disease is that every case is unique, and one person's course can be very different from the next. Please take comfort in knowing it is not necessarily a death sentence or a future of poor quality of life because your husband has been diagnosed. Not curable does not mean not living.
Hope things go well with the biopsy and you get some good answers and peace soon! I will be praying for you and your husband.
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angiebaldy - Name: angiebaldy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
- Age at diagnosis: 47
Re: I need smiles ...
Thank you so much, when my husband went in to see the oncologist we were encouraged by his initial words. My husbands internist is the one who diagnosed this because, as I stated, he was scheduled for a minor throat surgery. When his blood work turned up something he called him in for further testing (24 hour urine test).
Last year my husband had a problem with his knee (arthritis) and was again going to have minor surgery on his throat and his blood work again turned up suspicious, but they discovered at the time that the ibuprofen and Aleve (naproxen) he was taken was the culprit, and after he got off the ibuprofen, his calcium level went back up to normal and he proceeded with the throat surgery.
In February of this year he had a total knee replacement and did extremely well (arthritis again on same knee ). Well, after his surgery he could not take the Loratab (acetaminophen and hydrocodone). He did not like it, so he again started on Ibuprofen. So this year when he again needed throat surgery, they found this and again it was the ibuprofen.
My husband sounds sickly from all that but he is actually in great physical shape. He has a virus that grows benign growths on his vocal chords and has had this since college and he is now 69. His urine got better again but this time his internist decided to do this 24 hour test, hence the diagnosis. As they describe the "CRABS", his calcium count is great, no anemia, white and red count great, only a few spots between his wrist and elbows, but very small and he has no symptoms besides the bad urine test, which has improved from August to September when his internist did the final blood work, and the oncologist said that count has improved since August to September.
So there you are!! Told you I was obsessive, lol, but, as I told my husband, I have kissed way too many frogs to let this get him. Also he does not experience any fatigue!! His oncologist (who we know and is highly regarded in the medical community ) said that he could have been having this for decades, so I am praying for smoldering ... or a miracle and nothing.
Thank you so much for the encouraging words. Many blessings to you and yours.
Last year my husband had a problem with his knee (arthritis) and was again going to have minor surgery on his throat and his blood work again turned up suspicious, but they discovered at the time that the ibuprofen and Aleve (naproxen) he was taken was the culprit, and after he got off the ibuprofen, his calcium level went back up to normal and he proceeded with the throat surgery.
In February of this year he had a total knee replacement and did extremely well (arthritis again on same knee ). Well, after his surgery he could not take the Loratab (acetaminophen and hydrocodone). He did not like it, so he again started on Ibuprofen. So this year when he again needed throat surgery, they found this and again it was the ibuprofen.
My husband sounds sickly from all that but he is actually in great physical shape. He has a virus that grows benign growths on his vocal chords and has had this since college and he is now 69. His urine got better again but this time his internist decided to do this 24 hour test, hence the diagnosis. As they describe the "CRABS", his calcium count is great, no anemia, white and red count great, only a few spots between his wrist and elbows, but very small and he has no symptoms besides the bad urine test, which has improved from August to September when his internist did the final blood work, and the oncologist said that count has improved since August to September.
So there you are!! Told you I was obsessive, lol, but, as I told my husband, I have kissed way too many frogs to let this get him. Also he does not experience any fatigue!! His oncologist (who we know and is highly regarded in the medical community ) said that he could have been having this for decades, so I am praying for smoldering ... or a miracle and nothing.
Thank you so much for the encouraging words. Many blessings to you and yours.
Re: I need smiles ...
Hi Mildred,
I know the period you and your husband are going through right now is pretty stressful. But, as others have said, a diagnosis of multiple myeloma is far from a death sentence. I was diagnosed with symptomatic multiple myeloma in January 2013, and have been getting treatment since then. I've had great care from my medical team, great support from my friends and family, and have been fortunate enough to achieve sCR and MRD-negative status recently. So I think my case would certainly qualify as one to smile about.
As a way of putting some mental closure on my first year of treatment, I wrote a guest column for the Beacon, "Two Hundred And Six Steps: What I’ve Learned During My First Year Of Multiple Myeloma Treatment," (Feb 24, 2014), which they were kind enough to publish back in February of this year. In it, I described some of the good and bad of that first year, mostly good.
If you have a few minutes, reading the column might help you and your husband learn a little bit more about what to expect.
Best wishes to you and your husband. Please keep us posted on how things go.
Mike
I know the period you and your husband are going through right now is pretty stressful. But, as others have said, a diagnosis of multiple myeloma is far from a death sentence. I was diagnosed with symptomatic multiple myeloma in January 2013, and have been getting treatment since then. I've had great care from my medical team, great support from my friends and family, and have been fortunate enough to achieve sCR and MRD-negative status recently. So I think my case would certainly qualify as one to smile about.
As a way of putting some mental closure on my first year of treatment, I wrote a guest column for the Beacon, "Two Hundred And Six Steps: What I’ve Learned During My First Year Of Multiple Myeloma Treatment," (Feb 24, 2014), which they were kind enough to publish back in February of this year. In it, I described some of the good and bad of that first year, mostly good.
If you have a few minutes, reading the column might help you and your husband learn a little bit more about what to expect.
Best wishes to you and your husband. Please keep us posted on how things go.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: I need smiles ...
One other very positive thing to keep in mind involves the state of research on myeloma.
Just look at how things have changed over the last ten years or so. Revlimid and Velcade have become standard issue drugs that have resulted in solid remissions for many, many myeloma patients. Just in the last couple of years, we've had Pomalyst and Kyrolis, two drugs that appear more effective than the others, added to the list. There are a couple more that are making their way through Phase III trials as we speak and which may well be approved within the next couple of years. There are a bunch of other drugs in Phase I and Phase II trials, any of which could represent a solid breakthrough in treatment. And there is constant hard work going on to figure out just exactly how myeloma works and how to attack it even more effectively.
The way I see it, if you have a recent diagnosis of low or medium risk myeloma and you respond well to the standard treatments (Velcade, Revlimid, stem cell transplant), then you are very likely to go for at least five to ten years without the disease getting too far advanced. And if you keep it relatively under control for the next five or ten years, then it is very likely that there will be something out there that will control the disease even more completely (if not cure it).
For anyone with an incurable form of cancer, that's not too bad a situation to be in.
Just look at how things have changed over the last ten years or so. Revlimid and Velcade have become standard issue drugs that have resulted in solid remissions for many, many myeloma patients. Just in the last couple of years, we've had Pomalyst and Kyrolis, two drugs that appear more effective than the others, added to the list. There are a couple more that are making their way through Phase III trials as we speak and which may well be approved within the next couple of years. There are a bunch of other drugs in Phase I and Phase II trials, any of which could represent a solid breakthrough in treatment. And there is constant hard work going on to figure out just exactly how myeloma works and how to attack it even more effectively.
The way I see it, if you have a recent diagnosis of low or medium risk myeloma and you respond well to the standard treatments (Velcade, Revlimid, stem cell transplant), then you are very likely to go for at least five to ten years without the disease getting too far advanced. And if you keep it relatively under control for the next five or ten years, then it is very likely that there will be something out there that will control the disease even more completely (if not cure it).
For anyone with an incurable form of cancer, that's not too bad a situation to be in.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: I need smiles ...
Hi Mildred,
I can offer my view. Of course, everyone is different.
First off, I should mention that my primary diagnoses is amyloidosis. I was told I also have asymptomatic (or smoldering) multiple myeloma. I hang out here a lot on this site because the treatments for the two diseases are almost identical.
I'm 54. I was not sick when I was diagnosed. I just had swollen ankles.
I was on a couple of different combinations of chemo for 8 months and tolerated them very well. I continued to workout every day.
It was my decision to have a stem cell transplant this summer. I am on day 42 and I am feeling great! My life is almost back to normal. I am walking for miles and gradually starting to run again. I will not be happy until I can run another marathon and I have no plans to give up my dreams.
I might not be typical, but you asked for smiles. I hope my story gives you one.
Good luck to your husband!
I can offer my view. Of course, everyone is different.
First off, I should mention that my primary diagnoses is amyloidosis. I was told I also have asymptomatic (or smoldering) multiple myeloma. I hang out here a lot on this site because the treatments for the two diseases are almost identical.
I'm 54. I was not sick when I was diagnosed. I just had swollen ankles.
I was on a couple of different combinations of chemo for 8 months and tolerated them very well. I continued to workout every day.
It was my decision to have a stem cell transplant this summer. I am on day 42 and I am feeling great! My life is almost back to normal. I am walking for miles and gradually starting to run again. I will not be happy until I can run another marathon and I have no plans to give up my dreams.
I might not be typical, but you asked for smiles. I hope my story gives you one.
Good luck to your husband!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: I need smiles ...
Thank you so very much. Yes, all the positive attitudes give me hope. My husband is extremely positive and we know he will beat this. Thank you again for your kind words. May good health and His peace surround your life.
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