[Lucy1949]

My husband just found out he has myeloma

by Lucy1949 on Sun Jan 19, 2014 1:19 am

Hello there. I am new to this forum, but I am looking for any thoughts or suggestions that you could give me. This has been a very rough year, so far. My husband, who is 72, was recently diagnosed with myeloma in his left femur.

This came as a shock to both of us, and our family. What 3 of his doctors thought was something else causing his excruciating pain turned out to be myeloma. One of the doctors was a chiropractor that he’s had for 30+ years. He kept giving my husband chiropractic treatments for what he diagnosed as sciatica. The doctor diagnosed him without even taking an x-ray. He has also been going to a his cardiologist since 2004, and following his advice exactly. He had 2 other cardiologists before that. In 2002 he had a major heart attack, and 1 small heart attack in 2007. He also goes to a regular family physician. Both of those doctors also suspected sciatica.

My husband had this pain in his left thigh for 6 weeks, which slowly escalated until it got so unbearable that he almost fell trying to walk with crutches. That’s when I called 911 to get him to the hospital. While in the hospital, they took a biopsy, x-rays, and CT scans to find out the reason for all his pain. After all of these tests, they found out that he has myeloma in his left femur.

He had surgery in his left femur to remove 3 tumors. The biggest tumor was about 2 inches, and the other 2 were smaller than that, and further up the thigh. After the doctor drilled out the 3 tumors from the bone, she inserted a metal plate, and cement to keep the bone from fracturing. The doctor told us that his femur bone is very fragile, and it could break easily if too much pressure is put on it. We asked the doctor if the sciatic nerve could have had a part in his excruciating pain, and she said that it’s possible that the sciatic nerve could have been pressing on the tumors causing the pain, but she didn’t know for sure.

He was initially in one hospital for a couple days, and then got transferred to a different location of the same hospital. The reason for the transfer was that they had better specialized orthopedic surgeons, and an orthopedic oncologist at that location. He stayed in the first hospital for about a day and a half, and then got transferred to the second hospital for his surgery the next day. They also did a long bone scan (or total body scan) to see if the cancer had spread to the rest of his bone marrow or any other organs.

When we got the test results back, the doctor said that she thought that the cancer was just localized to the thigh area, but that those tests are not foolproof. They also did a CT angiogram and found 2 aneurysms behind his knees, but they think that those are secondary to the cancer. He was in both hospitals altogether for 10 days.

They discharged him 6 days ago. He is home now, and is doing ok, but he feels very tired, and has occasional pain in the incision. They gave him a pain med, and a muscle relaxer that he can take as needed. He had physical and occupational therapy in the hospital, and they gave him a walker to use. Eventually they said that he would be able to use a cane, and when everything is healed up he could walk without any assistance. This past week, we have had a physical therapist, occupational therapist, and a home nurse come to our home to evaluate him, and work with him.

He is doing good with the exercises that they are having him do. There are 12 exercises that they want him to do 2 or 3 times a day. He is so worried about the diagnosis, and how his active life is changing. He worries about the radiation treatments to come, and the effect they may have on him. He may have to have chemo as well, and he’s worried about getting sick with that kind of treatment. He has so much to live for, and doesn’t want to leave his family. This new diagnosis really bums him out because he has always been so active, by taking 2 or 3 walks a day, and riding his bike when the weather permits. As for the walking, he will even walk in the winter, when it is cold or snowy. He also spends a lot of time out in his garden in the summer.

We are going to meet with his orthopedic oncologist again on Monday to discuss all the test results, and his options going forward. On Tuesday, we will be meeting with another oncologist for consultation on radiation treatments, or possible chemotherapy.

I was wondering if any of you would have any thoughts or suggestions to ease his mind somewhat? What questions should we be asking the doctors when we go?

We want to be prepared before speaking with them. He feels so devastated by this diagnosis. Any encouragement or opinions on this would be greatly appreciated. Thank you.

[Multibilly]

Re: My husband just found out he has myeloma

by Multibilly on Sun Jan 19, 2014 8:46 am

Hi There Lucy,

Sorry to hear about your husband. Sounds like he has been through a lot.

It's important to understand that multiple myeloma is a SYSTEMIC disease that exists throughout your body. It's not like some other cancers where a localized tumor may pop up here and there and you remove the tumors and you may be done with it. Even though they have treated the bone tumors, the disease still exists throughout one's skeleton (and likely throughout one's blood).

So, if they have discovered multiple bone tumors (they are referred to as "plasmacytomas", not "myelomas") and they have been verified to be caused by multiple myleoma, he has an underlying symptomatic multiple myeloma disease throughout his body that needs to be treated SYSTEMICALLY, not just tumor by tumor. There are a series of tests that one runs to help determine the type and degree of multiple myeloma he may have. You will find those tests listed here. If they aren't running these tests, they should be:

https://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1

I would first suggest that you start to read up more on multiple myeloma (look at the resources link on this site, wikipedia, etc) and ask questions on this site.

Now for the good news. The latest drug treatments for myeloma are remarkable and are usually extremely successful and provide fairly fast relief from the symptoms. Your doctor will discuss the drugs he will need such as Velcade, Revlimid and Dex (there are many possible drugs and combos depending on his exact situation) to treat the myeloma. Given his bone involvement, you should also be talking about a drug called Zometa to treat his fragile and painful bones.

Also, ignore all the prognosis and life expectancy data that you may come across on the web. It's all dated and doesn't represent the latest that is possible with the current treatments. You will find this forum to be a good resource for reliable information.

Lastly, find a specialist that lives and breathes this disease...not just a oncologist/hematologist, but one who specializes in multiple myeloma and sees many multiple myeloma patients on a daily basis. This is the single most important thing you can be doing in the long run.

Best of luck to you and try not to fret too much...this really is a very treatable disease.

[NStewart]

Re: My husband just found out he has myeloma

by NStewart on Mon Jan 20, 2014 10:42 pm

Lucy-

I want to add a little to what MultiBilly posted to you. The drugs that usually are used to treat myeloma aren't like the chemo drugs that we have all heard about for solid tumors. These are targeted drugs that don't usually cause nausea and all of the other horrors that we think of when we think of chemo. Yes, there are side effects, but usually pretty mild and don't interfere with your regular routine. It is really important that your husband be started on a bisphosphenate infusion such as Zometa or Aredia for his bones. With the start of treatment the pain will begin to diminish and your husband should begin to feel like normal again.

Two people in my support group had femur fractures from the myeloma in the last couple of years. After surgery, radiation and therapy they are both walking normally again without pain. So, your husband should be able to return to his love of walking.

The best to your husband and you. Please get a 2nd opinion from a myeloma specialist. It is worth your time even if you need to travel to get to a cancer center where one is located. Most local oncologists will work with a myeloma specialist so that you only need to see the specialist once or twice a year. The specialist will recommend what treatment the local oncologist should provide and how to follow up on treatment. If your local oncologist isn't open to doing doing this with a specialist, then it's worth getting a different oncologist.

Nancy in Phila

[JoyDJ]

Re: My husband just found out he has myeloma

by JoyDJ on Fri Feb 21, 2014 4:06 am

Hi Lucy,

I truly understand yours and your husband's devastation in finding out he has multiple myeloma. I can only reiterate what the others have told you. Knowledge is power. Tell your husband to not put his head in the sand and learn about his disease. Sure it's scary but it's not the end of the world. On the right treatment and advice he can still lead a normal life and participate in life!

My husband was diagnosed at age 50 with an exceptionally high para protein. He is now 68. Yes, that's 18 years he's had this rotten disease. He is a survivor, not a victim! He has currently relapsed once again, and once again we are going down that path of "where do we go from here?"

I wish you and your husband the very best.

Joy

[randystrode]

Re: My husband just found out he has myeloma

by randystrode on Sat Feb 22, 2014 2:19 pm

I agree with all the previous posts. They gave you excellent advice. Having just been diagnosed in December, before my first appointment we had read many of the posts and forums on the Beacon that listed a complete list of questions we found to ask and had them ready and organized for our appointment.

Also make sure one person, probably you, can take notes as the doctor talks.I am the patient so I was listening so intently to what he had to say, I didn't remember many of his answers, but my wife and kids had it all written down so when we got home we could re-read and discuss it.

Also I am on CyBodD regimen and Zometa and have not been sick once in 13 weeks of chemo. I did have a fatigue issue that I had to deal with, but its a lot better, but I am still working 45 hours a week too.