Travel for Treatment - Part 2

Thank you everyone for your input regarding my previous post.   I really appreciate it so much.  Here is my update from the past week - I feel like my family is now against going to Arkansas after we saw my Dad's Oncologist, who was also against it (at least it seemed that way).  He recommended Dana Farber in Boston if we wanted to go for a 3rd opinion at this point.   I know they are a very reputable cancer center, but they don't seem to have the gene studies like Arkansas (and Huntsman), and I really feel that is what my Dad would benefit from most.  Unless they do and I haven't read about it?  His oncologist said that Arkansas was very regimented, and made my Dad feel like he would just be a "part of their study," and another patient that they can "collect data" from.  He said that they have a certain way they will treat him regardless of his specific case and made him feel like he would not get personalized treatment.   I read a few of your comments that really contradicted this so I'm looking for (more) info to help me convince him.  He has the chromosome 13 deletion, and 17p deletion, which are the main 2 that I've read to indicate high risk...along with several other crappy additions, deletions, etc.    I feel like we are wasting too much time going back and forth with this.  His #'s, according to the ISS or Durie Salmon are still Stage I, but isn't that system becoming more and more outdated with all of the recent cytogenetic findings?  Shouldn't we be more concerned with those issues than his IgG #'s or Beta-2 Microglobulins?? 

I'm just trying to get some sort of plan in place and feel so frustrated with all of the waiting.  Any thoughts on Dana Farber, or more on Arkansas? 

Hi, Kristimarie,

I don't know anything about the work they do in Arkansas (although, like you, I have certainly read marvelous things), but I have been under treatment at Dana Farber now for over a year, and have made good progress in my treatment.

Actually, they have  mapped a series of  genomes of Multiple Myeloma, and are quite technologically advanced.  My dr. is Nikil Munshi, a MM specialist.  They are also doing a research study on a possible genetic connection among extended family of MM patients, and I am part of the study. I find what they are doing to be quite fascinating.

Good luck with your decision-making. Just go with your gut feeling. It's usually right. If you want more info, let me know.

Mary Ann

I apologize, but it's kind of funny hearing a general onco calling one of the, if not the, most successful MM treatment schemas, regimented.  General oncos open a book or WebMED and treat with the latest novel drugs.  There's nothing personal about that.  Arkansas has at least put their approach under the microscope of peer review.  Their staff is loaded with PhDs.  They're a research facilaty.  You can't find that with most others.  They're simply following Arkansas lead.  Ask the onco what studies Dana Faber has conducted that lead him to believe they're the best choice for your father.  Ask him how long Dana Faber patients live on average.  Then, review Ark's statistics.  Just because Ark tracks their statistics doesn't mean they don't care.  Their studies have proven why they're considered the best.  If I had the choice of getting the best treatment availble or good treatment plus a warm fuzzy feeling, I'd take the best treatment.  If you go to the Huntsman website fightmyeloma.org and read their chat board begining with the earliest posts, you see those patients were treated at Ark and followed their guy to the Huntsman.  Why?  Because the guy is good and he cares.  My guess is the other doctors in Ark care just as much.  I believe your onco made a foolish ignorant statement.  I'll bet if he had MM and had to make the choice, he'd be considering Ark. 

Sorry I'm of no help, but general oncos say the funniest things sometimes.....to me anyway.

oh and yes, gene array studies are important.  However, I wouldn't let that be the lone decision piece.  It'll tell them how aggressive the MM is thus how to hit it.  However, it'll serve those coming behind your father more than him...in my opinion anyway. 

Dana Faber is a solid cancer treatment center and at the center stage of MM research and treatment.  However, in my opinion, Ark is the Gold standard; others follow their leading edge research into new discovery. 

As you know, I was treated at the Huntsman.  Their doc are all from Ark, but they've made their own tweeks.  It's true, at the Huntsman, all that can handle a tandem, get it.  The dose is altered for certain conditions, but it's all basically the same.  Not once did I feel like a number.  In fact, my doc and I still share e-mail and I was diagnosed Nov 07. 

Best of luck.  I know it's a challenge.  Bottom line I guess, it's your father's call.  Just tell him not to have any regrets.  And you as a caregiver, please have no regrets in his decision.  After all, we can only do our best

Doug

I re-read my post and my measage got all muddled.  All the static about Ark aside, if I were being treated at Dana Faber, I'd have all the confidence in the world that I was receiving cutting edge care.  Like I said, they're center stage, no question.

I aplogize for all the white noise

Doug

Hi Kristimarie,

I received the Myeloma newsletter yesterday from Arkansas (UAMS).  If you go to: http://myeloma.uams.edu and click on "National Cancer Institute Awards $19.5 Million Program Project Grant to the Myeloma Institute" (it's in red near the top of the page), it will take you to the most recent article referred to in the newsletter.  Also, go to http://myeloma.uams.edu /news/newsletters.asp.  There you can read archived newsletters.  

When I went to UAMS, I had had lupus for about 30 years with kidney damage from lupus kidney disease.  Dr. Barlogie adjusted the treatments for my needs.  I don't know where your doctor is getting his information from.  I was never treated like a number. Yes, I did join the study only to help people like your father and anyone else newly diagnosed.  Absolutely no one is forced to join the study and you get the same quality of treatment whether in or out of the study. 

Is your father high risk or low risk?  This is information from the gene studies they use to decide what treatment will work best for a patient.

One thing I do know is that the treatment at UAMS works and and it works because of the research they've done.  If my local oncologist didn't refer me to UAMS, I don't know if I'd still be here.  They certainly weren't doing tandem transplants here and my prognosis was not good (3 - maybe 5 years).

I agree with Doug.  Whatever decision you all make is the one you and your father need to be happy with.  It's a hard decision.

Best of luck.

Lois

Print this for your family and your father's onco and ask him who else is doing this and/or having this kind of success...this personalized medicine that's working

http://www.uamshealth.com/news/?id=5349&sid=1&nid=86

http://myeloma.uams.edu/myeloma-TT3-TT4.pdf

best of luck

Hi Mary Ann,

Thanks for the info regarding Dana Farber.  I hope we hear from them soon so we can make this decision.  My gut has been telling me Arkansas would be the best option, and after reading from Doug I'm sticking with that.  It's good to know though if he does choose Dana Farber, he will be in good hands there as well. 

Kristi

Hi Doug,

I appreciate your honesty and passion for this fight and yes, you are a big help!  I wish my Dad would get on here and talk with everyone.  Maybe one day...

I have sent your articles to my family and will take it to my Dad's next appt. 

One of the very first things that prompted me to suggest him getting a second opinion at Hopkins was when his Oncologist pulled out a table on a sheet of paper and started showing us "look it says here, that if he has this you treat, and if this, don't treat...."    Also, his last appointment I was asking my typical 50 questions and the doctor made a comment to me that "this wasn't his first myeloma patient."   Very frustrating I must say. 

Anyway, I just wanted to say thank you for your response and links.  Yes, we can only do our best but I know that this first time around with treatment and how they plan on attacking it is the most important, and I so desparately want to get it right. 

Hi Lois,

Thank you as well for the great links and information.  From what I have read, my Dad is high-risk because of his cytogenetics.  His oncologist has never come out and said that is the case.  His statements are more vague like "your numbers aren't that bad," or "we know these chromosome abnormalities are troublesome, but let's just watch you closely and wait to start treating you."  Every appointment I try to find out what exactly he means by "troublesome," but still can't seem to get any answers.  He does say that because he is Stage I on paper, there is no sense in treating him right now.  I don't agree and don't want to settle for that, and have convinced my Dad of the same.   Arkansas has already sent us a packet, and Dana Farber should be calling any day now.  So we wait...

This is such a rollercoaster but I know I don't have to tell you that! 

Thanks again,

Kristi

On Nov 03, 2009 8:50 PM kristimarie09 wrote:

Thank you everyone for your input regarding my previous post.   I really appreciate it so much.  Here is my update from the past week - I feel like my family is now against going to Arkansas after we saw my Dad's Oncologist, who was also against it (at least it seemed that way).  He recommended Dana Farber in Boston if we wanted to go for a 3rd opinion at this point.   I know they are a very reputable cancer center, but they don't seem to have the gene studies like Arkansas (and Huntsman), and I really feel that is what my Dad would benefit from most.  Unless they do and I haven't read about it?  His oncologist said that Arkansas was very regimented, and made my Dad feel like he would just be a "part of their study," and another patient that they can "collect data" from.  He said that they have a certain way they will treat him regardless of his specific case and made him feel like he would not get personalized treatment.   I read a few of your comments that really contradicted this so I'm looking for (more) info to help me convince him.  He has the chromosome 13 deletion, and 17p deletion, which are the main 2 that I've read to indicate high risk...along with several other crappy additions, deletions, etc.    I feel like we are wasting too much time going back and forth with this.  His #'s, according to the ISS or Durie Salmon are still Stage I, but isn't that system becoming more and more outdated with all of the recent cytogenetic findings?  Shouldn't we be more concerned with those issues than his IgG #'s or Beta-2 Microglobulins?? 

I'm just trying to get some sort of plan in place and feel so frustrated with all of the waiting.  Any thoughts on Dana Farber, or more on Arkansas? 

Hi Kristimarie:

I have been a patient at University of Arkansas

under the care of Dr. Barlogie for the past 5 years.  Never once did I ever feel I was just a number being used for data collection.  One never feels hurried when they meet with Dr.

Barlogie.  I was imressed when I met with him

he knew all my past history, genetic profile, risk factors, etc.; he only looked at my chart for current information.

I was registered with a teleconference a while back where they had myeloma specialists from

all over the country, and when a difficult question came up all the other doctors deferred to Dr. Barlogie.  A Dr. from Dana Farber was one of the physicians participating.

We have to drive 1200 miles one way to see

Dr. Barlogie, but I feel it was divine intervention that brought me to Little Rock.

I live in Florida and I had the feeling that none

of the physicians I contacted really did not know how to proceed.

My husband has been my caretaker throughout

this long journey. 

I have been in complete remissionsine 2005.

I wish you all the best in your decision.

God Bless You All.

Molly_2