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Confused - hearing everything second hand

by worried_daughter on Thu Aug 29, 2013 12:03 pm

Hello,

I was hoping this knowledgeable board can help me. I found out a few weeks ago that my dad has multiple myeloma. He had pain for 8-12 months leading up to this diagnosis, in his hip and back. He started chemo immediately, had a blood transfusion, and is on a very strong pain killers.

Since he started treatment, everything seems to have gotten worse. He is hunched over, can barely walk, in more pain than ever. His body seized in the night and he couldn't move. What is happening? Where is the pain generated - is it all from the bone lesions?

Doctors are increasing his pain medication, and now starting him on radiation therapy. This was a surprise, because an earlier MRI concluded he didn't need radiation therapy. I ask why he needs it now and don't get a clear answer - I think he is on so many pain killers he can't think straight.

Can someone tell me whether it's normal to get worse before getting better? He is planning on a bone marrow transplant in the New Year. Should he expect to find pain relief between now and then?

Also, his kidneys aren't responding to any treatment. His level was 290, down to 240, and back up to 280. I'm so confused.

Any advice would be greatly appreciated. I'd also love advice on how to be there for him, how can I be a good daughter to him?

Thanks.

worried_daughter

Re: Confused - hearing everything second hand

by Nancy Shamanna on Thu Aug 29, 2013 2:44 pm

Hi!

Of course you are worried, and it sounds as if your Dad is going through a terrible time right now. If he is getting the right medical assistance, there is a good chance that things will improve too. Just you being there for him is a real lifesaver, believe me! I don't know how I could have coped without the help of my family at the time of my diagnosis, which included my two daughters being there!

When I had really severe pain, it was from fractures in my vertebrae. It took several weeks for this to improve. In the meantime, I had started therapy, which included bone building meds and also 'dex' (plus a chemotherapy drug called Velcade). 'Dex' is often given as part of induction therapy. Although it is known for making us patients a little crazy at times, it does help to control pain. I was also taking strong pain killers and a muscle relaxant med. Because of the kidney issues, your doctors may be delaying some treatments.

I am wishing your Dad the best of luck and hope that, with medical help, he can get through the worst of these issues. Feel free to always post here and hopefully there will be someone who has been through the same problems. I have been through some, but not all of what he is going thru.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Confused - hearing everything second hand

by LadyLib on Thu Aug 29, 2013 10:23 pm

My husband was recently diagnosed with multiple myeloma. No back or skeletal issues present; however, he does have kidney impairment.

Sometimes things have to get worst to get better. I know that is not what you wanted to hear and this is a tough time for you and your dad. Hang in there - this can get better and is treatable.

Hopefully, they have him on Velcade and dex at a minimum. Both of these are not harmful to kidneys. My husband was given Cytoxan (cyclophosphamide) as well, which he has been able to tolerate. His kidneys have not necessarily gotten better, but they have not gotten worse, and that is a good thing. He has been going for about 5 weeks on treatment, and they stated initially that it would be about a 4-6 month process to get him in remission, so we are planning on staying the course.

Just stay the course, he will get better.

LadyLib
Name: LadyLib
Who do you know with myeloma?: Spouse
When were you/they diagnosed?: July 2013
Age at diagnosis: 42

Re: Confused - hearing everything second hand

by vicstir on Sat Sep 13, 2014 7:54 pm

Hello Worried Daughter,

As a parent with myeloma, the best way my children can be of help to me is not get caught up in my illness. To see them sad or stressed about the position I am in hurts me more then any treatment they will throw at me already and in the future.

Sometimes, the best medicine I can have is a hug or the kids just sitting with me holding my hand when and if I am feeling blue or tired.

What I am saying is there is nothing for you to do. I know that may be hard to accept, but the reality is this disease will do what it must and we are all along for the ride.

As for your father's pain, I am sure if he asked the doctor, they could give him stronger pain relief. However, if he doesn't ask, he wont get.

I am not sure if your dad may be keeping everything low key. Perhaps for your own peace you could go to his next doctor's appointment with him and ask all you need to know.

All the best Vic

vicstir
Name: Vic
Who do you know with myeloma?: Myself
When were you/they diagnosed?: October 2013
Age at diagnosis: 39

Re: Confused - hearing everything second hand

by Joe on Sat Sep 13, 2014 8:08 pm

Confused is right. That's what myeloma does, and I think you hit the nail on the head. You have to get worse before you get better. Hang in. Myeloma can knock you down, but don't let it knock you out.

Joe


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