Sunday, October 14, 2012

April 23, 2010 - The Amyloidosis Community Responds

After sending my question to the online support group about where to go for a diagnosis (Boston or one of the Mayo Clinic locations), I started getting responses immediately via the support group and direct emails to me.

In summary, there was no clear "winner" between Boston and Mayo. Some people recommended Boston due to their experiences there, others recommended Mayo due to a positive experience at a Mayo Clinic location. More than one person mentioned it was good that we weren't rushing into any treatment since we didn't know exactly what we were dealing with. The clear message was that we needed to get to either Boston or Mayo, and we needed to do it quickly since amyloidosis can progress so rapidly.

Below are excepts from most of the replies I received over the next two days, in no particular order, with minor edits. (Note that my email to the group had been forwarded to two different doctors at Mayo Clinic.)

From PS in Florida: As the Facilitator of the Jacksonville support group meeting, I can say for a fact that Dr. R is very knowledgeable in treating amyloidosis. There are 3 doctors at Mayo Jax that specialize in Amyloidosis . . . The only thing that I am uncertain of at Mayo Jax is what other doctors are on the team....nephrologists, cardiologists, gastroenterologists, etc. Since Mayo Rochester sees more Amyloidosis patients than Mayo Jax you may want to take that into consideration when making your decision. . . . There are several patients on this list that have been treated at Mayo Scottsdale so I will let them speak up on that clinic. I can say that I have not heard any complaints about the facility.

You can have the slides of your mother's biopsies sent to Mayo for further testing. Congo red staining can be tricky if the lab does not do the test very often. False positives or false negatives can occur if too much, or too little stain is applied to the specimen. . . . I am a localized amy patient but I can say that I have not heard of any cases of Localized Kidney amyloidosis....localized bladder, lung or skin, yes...localized Their lack of being able to distinguish which type of amyloidosis your mother has is a concern....Please go to Mayo or Boston! They will be able to determine the type for.

From JB in Georgia: Given our experience I would choose Boston over Mayo if it is possible.  Here are my reasons but keep in mind these reasons are due to what we experienced in our given situation.

Boston is an Amyloid Clinic - they only deal with Amyloid patients, day in, day out, all Amyloid all the time. All the patients in the waiting room are Amyloid patients, at different stages or varieties but still all Amyloid. The only two down sides are; I believe that they will only accept patients who are positively diagnosed with Amyloid (someone correct me if I am wrong) and that it is further away from us (Atlanta, Georgia).

Mayo on the other hand is great but while they handle Amyloid patients they also handle everything else too (which is great if you have more than one thing going on, which for some of us this is necessary). Mayo is an amazing facility, incredibility efficient, one stop shopping if you will. . . .
We just recently returned from Boston (J. has improved greatly since diagnosis) and the difference between our local Oncologist's office/Mayo and Boston is that (I know that this may sound silly) but the waiting room has patients who are dealing with the same things you are!  We met several families there, everywhere from a 10 year SCT survivor to a couple of newly diagnosis patients. There is a sense of comfort to see others dealing with this rare disease. Also you know that these doctors eat, sleep and breathe Amyloid, even if we were to get bad/somber news I would feel that at least we know that these people are in the forefront of treatments for this disease and that we did all we could do.  

So being that we have been to both Mayo-Jax and Boston, I would choose Boston. I hope this helps.

From PW in Missouri: I have been to both Mayo (who told me in 2004 there was nothing they could do for me) and to Boston, where I am now Dr. B’s patient. I was treated so differently in Boston and in 2006 was treated for my localized amyloidosis. I will never go back to the Mayo Clinic for my Amyloidosis but would see them for other things that cannot be treated by anyone else. I was at the Mayo for 4 days and was very disappointed with the outcome of my visit.

It’s everyone’s own decision but if you are not sure, then find out who has the most experience and what their success is when treating your Mom’s type of Amyloidosis. Most of the doctors will talk to you on the phone (wait until the big hitters are back from Rome) and it won’t cost you a thing….I have found the doctors in Boston to be the most caring individuals I have ever met.

Some on this group have had great experience with the Mayo – I was just one who did not. I just won’t take, “sorry, we can’t help you” for an answer.

From BJ: Having read both JB and PW's comments, I must agree 100%. My husband RJ has been seen first at Boston for original evaluation and experienced exactly what Jill spoke about. Then in 2007 he was so ill that he was unable to fly to Boston and we drove to Mayo, Rochester. He was admitted there for 5 days and even tho' they are an excellent facility, we did not have the comfortable feeling as we did with Boston. Then in 6 months he was to be seen at the Mayo in Scottsdale, which is a long story and suffice to say, it was a disaster. 1,500 miles for a 15 minute consultation because of a mix-up in their scheduling. So I do agree that Boston is the place to go for the professionalism, and yet the way they make you feel as if you are their only patient. Truly a place "we call our Amy home."

May you be encouraged and we are all behind you in whatever decision that you make.

From KH: Having experienced some of this similar problem with my mother Dec 2008 through May 
2009, I would say Boston. Yes, I am partial because they have been a GREAT group!! I contacted them last May/June & they were willing to give a second opinion on the biopsies already done & look all her prior tests. I felt like because they see it every day & know what they are dealing with, it was appropriate. My mother was high risk & through many tests, it was felt best to treat her at home. Even though we are 10 hours away, they have answered questions from my e-mail & from doctors locally anytime. We had mom in the ER last evening & through this support website, a physician from Boston who is covering for our doctor left a message for my mother because he knew we were having issues.

If you like your doctors have them contact Boston directly, they are always willing to 
try & help the patient!!

From KW in Florida: I go to Mayo in Rochester and have since 2003. I love everything about Mayo: my doctor, the staff, facilities, etc., etc. I have been to Mayo-Jacksonville only for support group meetings . . . I have never heard of amyloid localized in the kidney and I would agree with you about letting the nephrologist be in the driver's seat until your mom gets worked up at Mayo or BU. Preservation of kidney function is of paramount importance and indeed preservation of organ function is the main objective of treatment anyway. . . . You are wise not to rush into treatment until you know what exactly is being treated and why. Meanwhile diuretics and statins will help with the nephrotic syndrome symptoms. Tell your mom to be a little fanatic about restricting her sodium which isn't too hard to do if you avoid processed foods and eat bread only in moderation, a challenge in France! All the best to you and your mom. Please keep us posted. You're going about this in all the right ways and as a result your mom will have the best possible outcome! She raised a fine son!

From a Mayo Clinic doctor: 
Don’t hesitate to contact Mayo.... or...Boston

From Muriel Finkel (same email): Would suggest Rochester over Jax unless you know it is AL..

From BF: Over many months my husband, at 66, had increasing weight loss, stamina, breathlessness and then foamy urine which got him to a nephrologist. When a kidney biopsy with Congo Red Dye stained positive (and other tests done that day) they immediately diagnosed Amy. However, by the time we found Boston BUMC (and we live in Boston!!), and went through all of the testing there, he was a borderline candidate for the SCT due to
increasing heart damage (which caused the shortness of breath in his case).

So, I agree completely with Paula-----go to either Boston or Mayo as Fast as you can!
BTW, my husband did have the SCT successfully; it's now 2 years later, and he has no Amy. There are other options equally as effective, but time could be of the essence.

Good Luck----Your Mom is fortunate to have your advocacy---it's a Big Job! Please let us know if we can help you, too.

From Jim: I would suggest going to Boston or Mayo (Rochester if you can) and get there by last week. Time works against you with this disease!

From Dr. K at Mayo Clinic in Rochester: Muriel Finkel of Amyloidosis Support Groups sent your e-mail to me. I believe that the first step is to determine the type of amyloidosis. We dissect the amyloid stained tissue and then utilize mass spectroscopy to determine the type. This has been very successful in our experience. We find that it is more accurate than immunohistochemistry.

She also needs an echocardiogram to help determine whether the heart is involved or not. 
Your oncologist is wise in going slowly and to "do no harm."
I do not see patients any longer, but if your mother is interested in coming to Mayo Clinic Rochester, I would be glad to make the arrangements. My telephone number is . . . 


Dr. K


Next up: A short email conversation with one member of the online support group.

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