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Stage 3 Light chain multiple myeloma

Lpagelady
Posts: 4
Joined: Jul 2010

My husband was diagnosed in April 2010 with Stage 3 light-chain multiple myeloma after several months of debilitating back and rib pain. He was seeing pain specialists, had kyphoplasty and was getting treatment for "spongy" muscles. He kept going downhill and finally went back to our family doctor who ran a lot of tests. This doctor found an elevated calcium level and sent him to a hematologist/oncologist who diagnosed the light chain myeloma. While it was devastating news, my husband was relieved that the pain wasn't all in his head. The hematologist decided to wait a while to treat him but in June my husband started acting confused and disorientated. I took him in to the doctor who drew blood and determined his calcium level was dangerously elevated and he was in danger of renal failure. After a week in the hospital, the family decided he needed Rehab and he spent the next two months in a nursing home. He was being fed a LOT of pain meds and went into respiratory distress in July. He was given Ativan in ER and went into a coma. We thought we were going to lose him but he finally woke up the next day. They backed him off of the pain meds some and he came home in August. Once he came home, I wasn't sure that he actually was ready but he has progressively gotten stronger.

His bone scan showed he has multiple fractures in his rib cage along with two fractured vertebrae. We have talked about getting kyphoplasty on his vertebrae but we are afraid for him to be upside down and possibly break more ribs. The Zometa he is given once a month seems to have leveled off his bone loss and the pain is minimal now. His oncologist is giving him Velcade, malphalan and prednisone. Since he is Stage 3 and 70 years old, there is no hope of a stem cell transplant.

I work full time and do my best to take care of him, the house, the finances, etc. But it is taking it's toll on me and I fear getting burned out. People offer to help out but when it comes down to it, they really don't. I feel like they just say it to be nice.

I just found a myeloma support group in my area and hope to attend my first meeting at the end of this month. I look forward to meeting other people in our situation.

Anyway, I wanted to share my husband's story and look forward to your comments.

MrBobC's picture
MrBobC
Posts: 17
Joined: Oct 2010

I was diagnosed with MM in October 2008. I am 56 now. God allowed my disease to be detected by applying for additional life insurance, which led to the insurance company saying I need to see a doctor, eventually leading to my diagnosis.

I went through the treatments that lasted from November 2008 to May 2009. My cancer was caught very very early so I was lucky in that the treatments were very successful. I am in complete remission and on a 3 year maintenance plan, and have every reason to believe I will die from something other than MM.

My wife is/was my caretaker. I know it is very demanding, and she doesn't work out of the home. A support group is probably what you need most from what it sounds like. There are many, many resources for financial help and your hospital or oncologist should be able to guide you. LLS has lots of resources, I hope you will check with them if you haven't already.

Do you have a church family? If not you may want to get plugged in somewhere. Real churches, the ones that preach/teach biblical Christian ways, will welcome you with open arms. This could open some doors for support that you need.

I will pray for both you and your husband, that God will open doors for the help you need, and for his Holy Spirit to comfort you and give you the strength you need each day. Let me know how the meeting turns out. Hopefully you will know you're not the only one, and you are able to share your feelings with others that can know what you're going through.

Bob

Lpagelady
Posts: 4
Joined: Jul 2010

Thank you for responding to my post. And thank you for the prayers Bob - we both appreciate them. I did go to a MM support group last week. They won't have another meeting until January but I do think it will help being around people who understand. My husband couldn't bring himself to attend but I have hope that he will feel mentally and emotionally strong enough in the future to attend some meetings.

I was brought up in a Christian church but haven't attended church as an adult. I always felt it was just a social thing but now I can understand that being part of the church community has other benefits.

MrBobC's picture
MrBobC
Posts: 17
Joined: Oct 2010

I'm glad to hear you were able to attend a support group. I have looked for one around where I live (close to Lafayette, LA) and the closet place in in Baton Rouge, LA. Bad thing is it at noon during the week and I work (thank God I can still work full time) so I cannot attend. I thought about other groups with some here close to me but it seems it would be harder to relate with other cancers that have different issues and treatments than I have. But the support and discussions (able to express feelings to others about how I feel) could be helpful.

I'm glad to hear you see more value to being in church. Unfortunately many people use it only as a social gathering or to make business contacts. While that can be what happens, the purpose needs to be to get closer to God, and find out what His will for your life is. He will open doors that you never imagined. The great thing is He accepts you as you are; you don't have to meet some certain standards (that's a manmade rule only!) I'll continue to pray for yours and your husbands situation. I really hope he will attend a support group or church. It would do him a lot of good, emotionally, if he would. My thoughts of what could happen used to be at the forefront of my daily think. Still there, buy these thoughts don't rule me like they used to, and it has made my outlook much better.

I'll let you know what I think of a support group if I can attend one.

catonfish's picture
catonfish
Posts: 1
Joined: Dec 2010

My story sounds similar to yours; my husband (60yrs) has had MM for 4 years and has already had two kyphoplasty on his spine and two sets of fractured ribs and in fact has them right now. He does have the option of a stem cell transplant and has already had one but it didn’t last as long as the doctor would have hoped; we are now looking into another one because the pain is so intense. He is on Revlimid 25 mg , Dex 25 mg , Aredia treatments monthly. I was wondering what your husband’s light chain numbers are. I also wanted to know if the doctor told you it was stage III; I have asked and John’s doctor does not ever tell us and I’m having a hard time mentally wrapping my arms around where he is overall. My husband and I have been married only 1 year so a lot of his treatment was before me so I feel like a sponge trying to soak up all the information I can.

Lpagelady
Posts: 4
Joined: Jul 2010

Catonfish - thank you for your comments. I've been with my husband for 30+ years. And we've been through a lot during that time - his two open-heart bypasses, stents, colon surgery, etc. However I can't imagine being a newlywed and dealing with myeloma. It's such a cruel disease. I feel helpless most of the time.

In answer to your question, the last time the doctor mentioned the light chain numbers, I believe he said they had been cut from 1000 to 500. With normal being something like 34.

And yes, the doctor did tell my husband he had stage III. My husband asked him how long he had, and the doctor said 2 years. Personally I didn't want to know but it's his journey and he has the right to know. My husband has been home now for 4 months and he is so much stronger than he was when he came home from the nursing home. Before he came home, I actually had already started grieving because I felt like I was losing my husband. With all the pain and the pain meds, he was just existing, it was like he was just a shell of a person. But now I feel like I have him back, he can actually carry on a conversation and joke around. I cherish every day we have together.

I really credit the Zometa for stopping the fractures and stabilizing his bone loss. That has allowed him to back off his pain meds and his quality of life has improved dramatically.

Do you go to your husband's doctor visits with him? I have found I need to go with him to every visit. To get MY questions answered satisfactorily. Plus I ask questions of the nurses who administer the chemo. They are usually very helpful.

Do you happen to live near Indiana? I would be wonderful to meet something in a similar situation who could relate to my issues and frustrations.

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