Blood cancer help?

[packrat]

The husband of one of my school classmates is sick. They've been fighting and fighting to find out what is wrong w/him for months. He is in debilitating pain and can barely function. He has many medications and is unable to eat. She has been trying to force protein shakes so he has some nutrition.

They found out a few days ago he has blood cancer. They went yesterday to find out what stage it is in. This morning she posted that they learned his bone marrow did not have one of the levels they thought it would, which has brought into question - what else is going on in his body. So the Dr. said he was throwing in the towel, and was not comfortable treating him, that he is above and beyond anything he can treat/handle. He also had no other ideas on how to manage his pain better with the medicines that are able to be used at home.
He stated her husband is very "diseased" and hopes that someone will be able to make him more comfortable and give him some quality of life. He said to follow up w/a different Dr. and seeing about getting a referral to Mayo.

They've got three young boys. She is a police detective and they don't live around here. She has no family there and is trying to manage work and mounting medical bills and three kids. The Dr. pretty much washed his hands of them and now she feels like they're floundering to figure out what to do.

Does anyone have any suggestions of who to call or what to do to figure out what's going on w/him? I can't imagine being in limbo like that.

 

[House Cat]

Hmmm...sounds like an underqualified doctor at best. Blood cancer? Which type? This isn't even a definitive diagnosis! Did the doctor give a referral to an oncologist at Mayo or did he just expect these people to call the main number and be like "hey, yeah, umm..."

 

[TooPatient]

What state are they in?

I highly recommend Fred Hutchinson and also the Seattle Cancer Care Alliance. My grandmother got amazing treatment and support from them.

At least give a call and get suggestions about local resources.

 

[packrat]

All she knows is Multiple Myeloma. They were supposed to find out the stage yesterday but I guess b/c his bone marrow didn't have a level of something (that it should have?) they weren't able to find out b/c the Dr. didn't know what was going on with him. I was under the impression that this Dr. that they were seeing yesterday was the oncologist. I googled the other Dr. they were told to go back to and get a referral from to Mayo, and he is Internal Medicine. I posted on her FB to ask who the Dr. was yesterday.

this is what I copied from a fundraiser thing she has:

Sean started to experience medical issues in 2014 and the last year and a half has been an almost blur of tests, procedures, x-rays, scans, medicines, and doctors. Although they do have insurance, we all know how expensive all this can be. First insurance does not cover everything and multiple medical procedures, month after month add up quickly.

Earlier this year Sean had abdominal surgery as his stomach had quit working and a new pouch had to be created to serve similar to a stomach. Insurance did not want to cover this at all but after some convincing from the surgeon himself talking to the insurance provider they agreed. This surgery helped with some of Sean’s issues but not all by any means.

Sean continued to be in great pain and was tested for everything from MS to Lupus and from autoimmune diseases to lyme disease. This last week Sean was diagnosed with Multiple Myeloma - a rare form of blood cancer. They are still waiting for the bone and bone marrow biopsy to come back so they know what "stage" they are dealing with. They have increased pain meds to help him to not suffer as much.

 

[plad25]

My mother has multiple myeloma, so I hope I can provide some insight.

I think most importantly, obviously finding a doctor that is familiar with the disease is most important. Its not as common as other blood cancers, so depending on their city and access to quality health care, this can be more challenging.

When the tests come back- depending on how progressed it is, there may be a few or limited treatment options. She has had for years and gone through all the different treatments. I'm not a doctor, but I imagine chemotherapy regime would be prescribed immediately. With active cancer cells- my mom goes to chemo and takes an assortment of drugs. If he has any legions or tumors in his bones, those will require radiation therapy. They would need to do scans to identify these- but I know they can cause a great amount of pain. Often times, she is getting both chemo and radiation.

Given how many days she goes to the hospital for treatment in one week, it would be important to find an oncologist who specializes in multiple myeloma within driving distance unless they have the flexibility to travel/live in another city.

 

[packrat]

TP, they are in Nebraska.

Thanks for the insights, plad. I am running out of town until this evening but I will be back and I will pass the things along to her.

 

[TooPatient]

What state are they in?

I highly recommend Fred Hutchinson and also the Seattle Cancer Care Alliance. My grandmother got amazing treatment and support from them.

At least give a call and get suggestions about local resources.

There are amazing centers in other areas too. These are just the ones I am most familiar with. The research they do is wonderful. I am sure they can point to a very good specialist I'm their area.

 

[plad25]

TP, they are in Nebraska.

Thanks for the insights, plad. I am running out of town until this evening but I will be back and I will pass the things along to her.

One other thing to mention- again, depending on how advanced and his specific situation, it may be important to look into different types of treatment centers. He may want a traditional (so to say) treatment facility or look into hospitals that participate in clinical trials. A hospital could have a really good oncologist for this cancer but they may not participate in clinical trials. Hopefully he will not need that, but it may be a factor in hospital choice down the line.

I'm on the East Coast- so I'm only familiar with programs/hospitals here. Researching any potential oncologist is very important! I cannot stress that enough. My mom recently talked to a friend whose mother was diagnosed and the oncologist she was talking to wasn't even familiar with the newest drugs to fight this specific cancer.

 

[azstonie]

Cancers of the Blood: MD Anderson in Houston, Mayo Clinic Rochester.

 

[partgypsy]

I'm not a doctor, but personally, his symptoms don't really fit MM, unless there is something additional, pre-existing going on? I do agree it is good for him to find a cancer specialist, especially one for multiple myeloma, but it sounds like there is something else going on as well like a different form of cancer(medical mystery!). I hope he finds some resolution in both diagnosis and treatment.

She is probably having a lot of things thrown at her so to be a supportive best friend would be the best thing I would think at this time. The man's doctor should give him a referral to an oncologist. Multiple myeloma is actually one of the most common forms of blood cancers, not rare (which is lucky for him, more is known about it than very rare blood cancers).

 

[Mayk]

My birth mother was just diagnosed in May. High Stage Two of three stages. She's taking chemo but not radiation. Is the doctor who gave up a Cancer doctor? She's in the greater Seattle area and has consulted with three specialists on the best course of treatment. They started out slow due to her kidneys, now they are more aggressive. This is a dreadful, terminal cancer and while there are cases where it goes into submission it comes back. Tom Brokaw has this and wrote a book about it. I don't have many suggestions as her journey just started. I do know in this cancer every patient is different. It can effect everyone in a totally different way. She has no pain and right now the cancer is only in her marrow. But that is causing kidney issues.

Pakrat you are on my Facebook. Please feel free to private message me. Not sure I will have answers but sometimes it helps to just have another sounding board. The family should look at counseling for the wife and the kids.

 

[packrat]

Just got back home so I'll check her FB and see if there's been any updates. I did see right before I left that they have a referral to Mayo. I'll pass that Dr's name that azstonie posted.

Thanks Mayk, I appreciate that! (tho now I need to try and connect the screen name/real name argh!! hahahaha)

part gypsy, I thought that was strange too. Hopefully getting to Mayo will shed some light on it and give them a definitive diagnoses to work with.

I will tell her plad, what you said about the clinical trials and such too.

 

[Tekate]

Packrat, she needs to find a good oncologist / hematologist, many oncologists are hematologists.. this sounds sort of out there to me... a good cancer doctor will refer you to a specialist if he/she is not versed in a particular cancer.. My heart goes out to you and your friend, her husband and family.... good medicine is key for him.

((Packrat))

tekate

 

[Mayk]

Sent you a note. Hopefully I got it right too. The tattoos help . Mary

 

[packrat]

Thanks Tekate, I will pass that along as well!

Mayk, haha isn't it funny how we forget who others are after a while and you think of each other as just one name? Or maybe that's just me!

 

[packrat]

They were told to expect a call w/in three weeks just to *schedule* an appointment. Is it just me or is that totally ridiculous? She said she was told this is b/c of the number of extreme cases they see. And the referring Dr. was going to impress upon them the urgent nature, but apparently his isn't as extreme as others. They are 700 miles from Mayo. It's not like she can just run her husband over there on her lunch break.