Can I ask for advice

[peako]

My BIL was just diagnosed with Multiple Myeloma. My SIL emailed saying they were looking at doing a tandem stem cell transplant and that because "a friend" sugessted a specific cancer center they were thinking of using it. She doesn't say why this friend recommended it. They live on the east coast and using this center would be flying accross the country, staying in a hotel or something for 3 weeks at a time.

How do you decide who is "the best" to see? How do I politely without stepping on toes ask if they have looked at the many centers closer? I understand the need to use a place that is cutting edge, on top of the latest research with a good track record but just wonder.

If they did fly accross the country and one of them got the flu or a cold while travelling would everything have to be put on hold?

[GingerIL]

Hi Peako--

I'm so sorry that your family has to go through this horrible ordeal. The way to decide who is "best" for you is to do your homework, and then meet the doctors to see who you click with. Traveling for treatment is not at all unusual, but it should also not be taken lightly. Does your BIL and SIL live in a rural or urban area? Are there major medical centers close by? I don't think it is at all intrusive for you to ask if they have considered local cancer centers--so long as you phrase it with loving concern. Getting a cancer diagnosis is one of the most devastating things a person can hear, and one natural reaction (and the healthiest reaction, in my opinion) is to try to do anything you can to fight it--even if that means traveling across the country for treatment.

I understand that you only want the best for your BIL and SIL, and sometimes that means supporting their decision, even if you think you might do otherwise under the same conditions. I really don't know anything about Multiple Myeloma, so I cannot comment about where the good cancer centers are, but you could do some online research yourself to help your family in their search for the best treatment options.

Wishing your BIL all the best. Please keep us posted.

[shawny]

I'm sorry about your BIL. No, you are not out of line to feel the way you do. They are only in the 'thinking about it' stage. And maybe after more research they will conclude that a closer treatment center will work just as well. I understand your fears, but the decision is ultimately theirs to make. I'm sure they will be more than happy to discuss this with you so that you may feel comfortable with their decision - whether to fly across the country or stay closer to home. When a family gets hit with a cancer diagnosis, it's COMPLETE CHAOS! But things will settle down and the family will find a 'new normal'. Best of luck to you all.

[MarieL]

Please tread very carefully when offering advice. Believe me, I got lots of advice from family and friends when Marielle was diagnosed, most of it, well, honestly, I didn't listen to.

I did my homework. I looked at stats....what were the differences in survival rates...locally vs. nationally. When one thinks of leukemia in a child, one thinks of St. Judes. But, believe it or not, a child must have had zero chemo to qualify for St. Judes. (Or relapsed with no treatment.) Well, that ruled us out, because they initiate chemo the day of diagnosis, honestly, it's foolish to wait, since the amount of leukemic blasts in the blood directly correlate to the odds of surviving.

A friend recommended another treatment center, across the country, but the outcome difference was 1%. Really, not worth it for us to uproot ourselves from home, our support system for 1%.

Now, mind you, it's very different when you are talking transplant. Treatment centers vary widely in outcomes when it comes to transplant. (In our case, had Marielle needed it, it would have been a bone marrow transplant.) We might have considered moving for a transplant. It's not a matter of cutting edge...it's a matter of survival stats. If the center close to you has say, a 70% survival rate, and the one far away has a 90% survival rate, which center would you trust with your life?

[peako]

Thanks everyone

[Suebee]

I am coming off a prednisone taper after spending some time in the hospital with a gastric flu so I am cranky and blunt right now which is very much like some of the feelings during treatment. So tread lightly or they might eat you alive. It is their decision and unless you are going out of your way to take over caring completely and at some length for their kids and home I would stay out of it.

Research is very helpful. Why don't you ask them what you can do to help.

Sue

[MaggieM]

Although I understand your concern, please know that a diagnosis of cancer can turn even the most mild-tempered person, into a very angry person. Tread carefully. I've received so much conflicting advice from so many people. It's quite overhwhelming at times. I agree with what everyone else said. They should so lots of research before deciding which facility/hospital to use.