Multiple Myeloma

Posted by MZ @mehz4802, Jul 27, 2016

I was diagnosed after a bone marrow biopsy as having indolent myeloma 4 years ago. My oncologist says I now have multiple myeloma. I have not been receiving any kind of treatment, just blood tests every 4 mo. followed up by an office visit. The doctor prescribed some iron pills. A friend of mine also has multiple myeloma. She started taking calcium pills and her doctor is seeing some good results. I started taking calcium/vitamin D3 supplements. My primary care doctor diagnosed me with osteopenia (as well as high blood pressure and high cholesterol). My oncologist says that as long as he’s not worried, I should not be worried. But I keep feeling like there must be something that I can do to improve my situation.

I'm new here but not new to blood disease/cancer. I was diagnosed with Mantle Cell Lymphoma in February 2014 (rare). One of my new jobs is keeping myself alive and learning all that I can about my disease. There are certainly many resources on the internet for information. Just learn to distinguish between the charlatans and the real deals. First, in the world of blood cancers, there is something called "Watch & Wait." I don't know the details of MM but I suspect the same is true for MM if you have an indolent version. W&W is not uncommon and can be an excellent form of therapy for many. It keeps you away from treatment, which in some cases may be harsh and does not put you in any danger. Second, someone mentioned a second opinion. I assume your doctor is at Mayo, which is excellent. I have a kidney condition. That is why I came to Mayo. For my lymphoma, though, I go to the #1 rated adult cancer center in the country — MD Anderson. It would be a great place to seek a second opinion. I am treated in a local center for my lymphoma at the direction of MD Anderson. Trust me, having a second opinion from a top institution will likely help put your mind at ease. Knowledge is power!

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I had test that showed m spike 1.1….does it always mean multiple myeloma cancer? Go to hematopoietic Sept. Had breast cancer in 2016……could this be recurrence?

Liked by auntieoakley

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@cctoo

I had test that showed m spike 1.1….does it always mean multiple myeloma cancer? Go to hematopoietic Sept. Had breast cancer in 2016……could this be recurrence?

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@cctoo I would wait to see what your doctor says, as they compile all the results and form an opinion. Please come back and let us know what they say, will you?
Ginger

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@cctoo

I had test that showed m spike 1.1….does it always mean multiple myeloma cancer? Go to hematopoietic Sept. Had breast cancer in 2016……could this be recurrence?

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I cannot answer that question, but I can tell you that is a pretty low number. This means it is not very advanced. There will more answers with more information. Please feel free to call on us as those answers come in. Multiple myeloma has a lot of variables, and there will be some recommendations that are specific to your disease. This can be a hard time waiting for answers. I will be thinking about you.

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@auntieoakley

I cannot answer that question, but I can tell you that is a pretty low number. This means it is not very advanced. There will more answers with more information. Please feel free to call on us as those answers come in. Multiple myeloma has a lot of variables, and there will be some recommendations that are specific to your disease. This can be a hard time waiting for answers. I will be thinking about you.

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Thank you…..if m spike is detected could it disappear? Am having more tests Sept 4th…blood tests. Could it be mgus?

Liked by auntieoakley

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@gingerw

@cctoo I would wait to see what your doctor says, as they compile all the results and form an opinion. Please come back and let us know what they say, will you?
Ginger

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Yes Ginger…thank you. All other blood tests normal!! Dr. said kidney function better than most !!

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@cctoo

Thank you…..if m spike is detected could it disappear? Am having more tests Sept 4th…blood tests. Could it be mgus?

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It can disappear with treatment, because that is how they monitor my husbands disease. I do not know if it can go away on its own. Yes it could be MGUS. Also, not everyone who has MGUS gets multiple myeloma. The international Myeloma Foundation has a ton of information online. If you want to read more.

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@auntieoakley

Thank you, for your kind comments. Our lives are not challenge free for sure. My husband is on a 5 lb limit for life, because Myeloma ate holes in all of his bones before he was diagnosed. This is moderated some by the bone strengtheners but preventing more fractures is crucial to his quality of life. Although we have a great oncologist less than 60 miles away, the local medical climate is one of closed minds and doors and does not play well with others. This creates a bit of tension if there is an emergency. My husbands has a very limited immune system and has had to be hospitalized once locally for a pneumonia gone wrong. He also some other typical age related health issues that become a little more difficult when the Myeloma and bone disease have to be considered before physical therapy. All new prescriptions for thyroid, prostrate etc. must go through the interaction filter for the drugs he is already receiving. That being said, I manage his medications, and he is careful with his bones, and we try avoid exposure to viruses, and still we enjoy our time traveling within our region, watching movies, and visiting with friends and family. I am a patient advocate for anyone who asks locally, and spend a bit of time educating people about how to be a part of your own medical team. All of which I learned from our experiences at Mayo Clinic. We were blessed to be able to have his stem cell transplants there, being part of that amazing system makes you long to help others who have to try and manage complicated diseases without that kind of help.

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I am new to this group, and was diagnosed with MM in June, 2019. I also had multiple lytic lesions, all over, on diagnosis. I am being treated locally, with RVD, now on week 9. I have consulted with a wonderful hemotoligi st at Mayo in Jacksonville, for a possible Autologous SCT. I am my own advocate, at present, and am learning all I can. I need to exercise, and have been walking once or twice a day. I have fatique all of the time, and am also afraid of pathological fractures, so walking seems the safest thing to do, for now. I am also very careful not to fall. Thank you for your post, because I am nervous about the SCT. But 9 years is a lot, after this recent diagnosis, which has turned our life upside down.

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@lisal64

I am new to this group, and was diagnosed with MM in June, 2019. I also had multiple lytic lesions, all over, on diagnosis. I am being treated locally, with RVD, now on week 9. I have consulted with a wonderful hemotoligi st at Mayo in Jacksonville, for a possible Autologous SCT. I am my own advocate, at present, and am learning all I can. I need to exercise, and have been walking once or twice a day. I have fatique all of the time, and am also afraid of pathological fractures, so walking seems the safest thing to do, for now. I am also very careful not to fall. Thank you for your post, because I am nervous about the SCT. But 9 years is a lot, after this recent diagnosis, which has turned our life upside down.

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Good for you, that you are learning all you can. I really feel like the information is so crucial with this complicated disease. Have you gone to the IMF and requested the information pack yet? You can pick them up at Mayo too. Husband was told swimming and walking were really his only options for safe exercise but walking was the most beneficial. Transplant was hard for him but it is only one dose and when it is done, it is done and you have time to recover, he has had two with the second about a year after the first giving him a complete response. You can do this! We went to Rochester but I am sure it will be basically the same. If you are going to go, give me a tag and I will share my best tips. You can take what you like and discard any tips you don’t need. I hope you don’t mind, but you just landed on my prayer list. I would like to address the fatigue, I know it is hard now, and every body is different. That being said, my husband was very,very fatigued for a long time before he was diagnosed. If it was eating holes in all your bones it was pretty advanced like his was. He actually started feeling better after a while on the revlomid. The transplant knocked him down but then he actually started feeling better and better. The treatments can cause fatigue, but in his case at least, the lack of normal blood counts was the big driving factor for fatigue, the more the disease got under control, the less fatigue he felt. I will say that he is tired a lot now, but he is mid 70s, and still does quite a bit each day.

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@auntieoakley

Good for you, that you are learning all you can. I really feel like the information is so crucial with this complicated disease. Have you gone to the IMF and requested the information pack yet? You can pick them up at Mayo too. Husband was told swimming and walking were really his only options for safe exercise but walking was the most beneficial. Transplant was hard for him but it is only one dose and when it is done, it is done and you have time to recover, he has had two with the second about a year after the first giving him a complete response. You can do this! We went to Rochester but I am sure it will be basically the same. If you are going to go, give me a tag and I will share my best tips. You can take what you like and discard any tips you don’t need. I hope you don’t mind, but you just landed on my prayer list. I would like to address the fatigue, I know it is hard now, and every body is different. That being said, my husband was very,very fatigued for a long time before he was diagnosed. If it was eating holes in all your bones it was pretty advanced like his was. He actually started feeling better after a while on the revlomid. The transplant knocked him down but then he actually started feeling better and better. The treatments can cause fatigue, but in his case at least, the lack of normal blood counts was the big driving factor for fatigue, the more the disease got under control, the less fatigue he felt. I will say that he is tired a lot now, but he is mid 70s, and still does quite a bit each day.

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Yes, I was having fatique, before, diagnosis. And for about 1 year prior, I noticed I was gradually having more and more sinus and bronchitis infections. From January, 2019, through mid March, 2019, I was not able to fully recuperate from the respiratory problems, and developed new onset asthma symptoms. In March, I was treated aggressively with steroids/breathing treatments, antibiotics, etc., and due to bad chest x-ray, had a chest CT on March 25. This CT showed cleared up lungs, but multiple lytic lesions on thoracic and lumbar spine. Thus leading to diagnosis of MM, in June. I thought my intermittent back pain was from nursing for 25 years, and the fatique, from being 54, and working night shift for 9 years! Now here I am! Sorry for the long post, but just still wrapping my head around it all! Thank you for sharing you and your husband's personal experience! And for your prayers! Will add you both to my prayer list, too!

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@lisal64

Yes, I was having fatique, before, diagnosis. And for about 1 year prior, I noticed I was gradually having more and more sinus and bronchitis infections. From January, 2019, through mid March, 2019, I was not able to fully recuperate from the respiratory problems, and developed new onset asthma symptoms. In March, I was treated aggressively with steroids/breathing treatments, antibiotics, etc., and due to bad chest x-ray, had a chest CT on March 25. This CT showed cleared up lungs, but multiple lytic lesions on thoracic and lumbar spine. Thus leading to diagnosis of MM, in June. I thought my intermittent back pain was from nursing for 25 years, and the fatique, from being 54, and working night shift for 9 years! Now here I am! Sorry for the long post, but just still wrapping my head around it all! Thank you for sharing you and your husband's personal experience! And for your prayers! Will add you both to my prayer list, too!

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There is a lot of good news here. There are many tools in the treatment box for Myeloma. There is a mixed blessing of the rising number of cases every year. I hate to think of more people getting it but it has also meant more research, and more new treatments. I read every new study and trial that I can get my hands on, usually from IMF. It gives me a lot of encouragement for Myeloma patients of today and in the future. The one piece of advice I would give mentally is never give an inch to this, if it takes an inch, take that inch back when you feel stronger, there will be times when you feel bad but there will also be a lot of times when you feel pretty good. When you feel good, do what you want to do to make you happy. The one piece of physical advice I would give is to buy stock in hand sanitizer, haha, it is everywhere, in the cars, in my purse, I slip it in his jacket, I get him to use it, and I use it everywhere, all the time. He also no longer shakes hands. You are in really good hands at Mayo!!

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@ozys

Our trips to Mayo are coordinated by a very accommodating Myeloma doctor’s office at Mayo, Dr. John Lust to be exact
always works with me and my schedule to work out a best time for us to make the trip. It is about the patient and their
needs at Mayo, not the other way around. One does have a choice about their health care, a rarity in today’s system.

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@ozys Hi ozys! It has been a long while since your beginning posts, and I wonder how things have been for your husband as well as for yourself. Myeloma can take many twists and turns for all of us. I didn't know your ages as that can make a large difference in what this diagnosis means for our lives. I had to laugh at my Mayo checkup in August when I learned the past six months were especially rough because the treatment dosages were higher than usually given to patients "my age!" That would be 78. :0) But it sure worked!
So, how are things going for you and your husband? Nancy

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@mamaellie

Hi,

I have mm. Was identified 1 1/2 years ago. I responded very well to velcade, dex and rev, And although I have been in near remission, lambda 24 and kappa ,61 and no presence of monoclonal light chains in urine for 10 months, the progression of lesions has not stopped. I have had numerous side effects. : adrenal gland insufficiency, skin that is like tissue paper requiring visits to the Wound Clinic , constant discomfort and pain, more lesions requiring radiation,etc.
My motto is “this cancer is one that keeps on giving”.

I live in a MAJOR city and am not shy about changing docs. I am ‘fairly informed’ and belong to a marvelous support group. I am sorry I sound like Debbie Downer, but this cancer is a true pain BUT I am alive and a survivor.

That’s all folks

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@mamaellie
Hi there! When I first read your post, you made a statement about mm being "the gift that keeps on giving", and that couldn't be more true to my experience! At the time, you certainly had a few issues on the table. Of note was near remission, but continuing to deal with progressive lesions, and I wonder how you are doing these days. Do you mind offering an update?
Nancy

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@packgb19

Does anyone here know some with Multiple Myeloma?

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I have MM.

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@packgb19

Does anyone here know some with Multiple Myeloma?

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Can you please tell me your story and how got it and where you are at currently?

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