[rcerulli]

Lost in a sea of confusion..

by rcerulli on Wed Jun 12, 2013 12:19 am

My dad was diagnosed with multiple myeloma the week of Thanksgiving 2012. He is 66 years old. He has been in the hospital for nearly 4 1/2 months with (3) two week stays at rehab's before having to get rushed back in.

They found a softball sized tumor on his hip and lesions on his spine. The hip tumor had destroyed the bone and make it so he couldn't walk. He was also diagnosed with diabetes.

The tumor had made my dad bedridden due to the pain from using his right leg.

The plan was for him to receive Chemo and Radiation also with Revlimid.

In January my father came down with Pneumonia and the hospital was afraid he wasn't going to make it. We went through a very rough patch but he pulled through ok. Since then he has dealt with severe nausea, and multiple infections, ranging from fungus in the esophagus, UTI and now his latest from a bed sore.

The UTI and the bedsore gave him Sepsis while he was in the rehab and now he is in the hospital again. They stabilized him, got his blood pressure back up but his stomach is not working right and he can't get nutrition. They think this might be gastroparesis,

We met with the director of Palliative Care today, and basically she said he will never get better, or walk again. And that we need to set goals with him. She was pressuring us into signing a DNR for him, because if they had to do CPR and intubate, the compressions would break the bones in his chest, and he would die anyway. My father before he got sick said he did not want a DNR, and even today when i asked him, he said he wanted to live.

They also said that if we wanted hospice, they would offer it to us without issue, which i thought was a bit bizarre. As if we had to option to kill my father.

I am sorry this is a bit jumbled as i spent most of the day crying. This was a real shock to me and my family, because from day 1, we were told Myeloma was very treatable, and that it wasn't as serious as lets say lung cancer. Even from reading online, i never got the sense that this was a serious disease. I don't know why his case is much different. Maybe its the fact that he has been bed ridden so long.

I don't really know what i'm asking for. Maybe some guidance... Right now he is in Stony Brook university on Long Island, we are thinking about contacting Sloan Kettering for a second opinion.

If someone could give me some guidance or thoughts i would really appreciate it..

Thank you

[veganmartin]

Re: Lost in a sea of confusion..

by veganmartin on Wed Jun 12, 2013 6:46 am

I'm so terribly sorry to hear about what you and your family are dealing with. It's heart-breaking and sounds a lot like my mother's story. She's young too (67) and was just diagnosed in September (my posts on this forum talk about her constant struggles). Since then, she's been in and out of the hospital a total of 7 times, 3 of those were for a month or longer (this last time she was in the ICU for 1 month w/ septic shock). At your father's age, he should be enjoying retirement, hoping for grandchildren and living the good life. It's so hard to see this happen to them and don't give up hope by one (sometimes pushy and un-compassionate physician). I've had a few along the way.

I would HIGHLY recommend that you find a multiple myeloma specialist. Being that you're in the NYC area, I'm sure people on this forum can suggest some excellent centers in your area. I'm in Buffalo and my mother is seeing Dr. Kelvin Lee at Roswell Park Cancer Institute. He does specialize in multiple myeloma and he is excellent. My mother just got out of the hospital (actually, she was in sub acute rehab for a couple weeks after this last bout), but she has an appointment w/ an infectious disease specialist at Roswell Park next week. Maybe an ID doc can be in on the case considering your father has had multiple infections? Keep us updated and we're thinking of you and your family. Take care.

[Joy]

Re: Lost in a sea of confusion..

by Joy on Wed Jun 12, 2013 7:21 am

Hi RCerulli,
I'm so sorry to hear about your father's situation and everything that you all are dealing with. It's not fair. Your dad is very lucky to have such a caring person looking out for him. I agree that getting someone else in for a second opinion would be a good idea. If you can get to a myeloma specialist, it might help out not only with your father's medical condition, but could put your mind more at ease since it seems right now that you are fighting two battles: one being the feeling of uncertainty that the doctor you have is doing all that could be done.
I'm not in your area but hopefully others will have ideas for you as to who you should call. Taking care of someone with a serious illness is so tough. Just know that you are a good person trying to do what is right. Be kind to yourself.

[Dr. Jason Valent]

Re: Lost in a sea of confusion..

by Dr. Jason Valent on Wed Jun 12, 2013 9:06 am

Sorry to hear this.

Myeloma can have a significant effect on the ability to fight infection. This is probably part of the problem with your dad suffering recurrent episodes of sepsis.

I assume that radiation has been completed to help the pain.

The treatment for myeloma should be able to be tolerated even if your dad is debilitated. Also, if there are concerns about wound healing of the ulcer on his back, Velcade and probably Revlimid can be used. Corticosteroids, which are usually part of treatment, can be withheld as they do affect wound healing.