[angiebaldy]

Not sure about my hematologist/oncologist

by angiebaldy on Thu Jul 19, 2012 5:32 pm

Finally saw the md today. I have been upset it took 3 weeks to see him but during that time I educated myself and reviewed my labs. When he came it and started talking to me it was apparent that he had hurriedly reviewed my chart and to say the least was not up to speed on me. To his credit I will say one of his partners ( my former md) left the practice and he is overwhelmed. When we are dealing with my life however I do not need someone who is overwhelmed.

Now that I have whined a bit I will talk about the appointment. He started out by trying to tell me that it I did not have an monoclonal protein and this was just a very mild hypogammaglobulinemia. While I would love for that to be the case I referred him to my spep completed through the lab of his choice which came back m-spike beta region peak consistent with a para protein. Also said decreased gamma region consistent with hypogammaglobulinemia. He then said ok but mgus, multiple myeloma are not in the beta region only gamma.

So that is my question today? My serum immunofixation said IgA lambda paraprotein peak detected and it is in the beta region. Can't the immunoglobulins migrate over to the other regions such as beta and still be indicative of a monoclonal gammathy? Also isn't there sometimes a compensatory lowering of one of the other immunoglobulins such as my gamma? My beta is 1.69 and gamma is 0.42. My IgA as 838 and IgG as 575 with IgM being 57. I know this is all low but I have been on at least 20mg of prednisone for more than 10 years for lupus and that is probably giving falsely lowered numbers.

Now my 24hr urine was negative for BJP but it was positive for alpha 1, alpha 2, and beta micro albumin which could indicate some renal insufficiency.

Like I told the md. I would be the happiest person alive if this was not multiple myeloma or even mgus but I need to be 100% confident in that diagnosis so that I don't come up in a late stage later on by not addressing this early.

He did order a skeletal survey, MRI of my lumbar spine and right hip ( that is where a lot of my pain is) and a CT of my chest. Also told me that even if this is all negative he will be doing a BMB after next appointment in 3 weeks. Oh yeah he is also treating my low vit d (13.34) with ergo calciferol weekly. He could not explain to me however why my gastric is high at 715 and my ca is high normal at 9.5.

Plan is to get all tests completed include ding BMP but I think I am going to get a 2nd opinion after that by someone who specializes in multiple myeloma ang mgus. This is obviously not where his experience lies although I am forever grateful to him for saving my son's life who has Hodgkin's Lymphoma.

[angiebaldy]

Re: Not sure about my hematologist/oncologist

by angiebaldy on Thu Jul 19, 2012 5:37 pm

Well typing is not my strong point and I should have done proof reading before posting. Sorry. Hope everyone understands it.

It was also supposed to say Gastrin not Gastric level.

[kdboca]

Re: Not sure about my hematologist/oncologist

by kdboca on Fri Jul 20, 2012 10:23 am

DO get a 2nd opinion after the completion of your tests. Do this even if you think your md is a god. I think most readers of this site who have been able to find an multiple myeloma specialist have done so instead of staying with a local physician. I drive 100 miles each way to get to Moffitt Cancer Center and see a physician and staff who only work with multiple myeloma. I would also suggest getting the BMB done by someone who does it all the time.

[Art]

Re: Not sure about my hematologist/oncologist

by Art on Fri Jul 20, 2012 12:58 pm

Angie
I saw 3 oncologists ( 4 if you include the general hematologist/oncologist) but 3 that are very familiar with multiple myeloma. So needless to say I am very certain with my SMM diagnosis. I also am taking part in a natural progression study at the NIH. I understand your anxiety and I can honestly say it does get better with acceptance.
What area of the Country are you in?
Best wishes and Prayers
Art

[dianem]

Re: Not sure about my hematologist/oncologist

by dianem on Fri Jul 20, 2012 1:03 pm

Hi Angie - I hear what you are saying about getting a second opinion. I was diagnosed with Ig G MGUS (FISH IDd chromosome 7 thur Mayo) this winter at age 56 following a BMA. In Oct of 2011, I had my first M spike of 1. A month later it grew to 1.5. Two weeks ago I had the routine 6 month blood test. The hemo-oncologist office called and said 'everything is in the same range as Dec. 2011, except your hemoglobin is higher (13.9) -don't need to come in, but repeat the blood test in 6 months.'

I learned of a neighbor with a Ig A MGUS whose M spike is much lower (.5) than mine and yet she goes in for more routine urine/addt testings (may even use the same practice as me). I clearly don't want to go in for testing, but wonder why two doctors (both hemo-oncologist) vary/patient. Sometimes I question if I should get another opinion too. Diane

[angiebaldy]

Re: Not sure about my hematologist/oncologist

by angiebaldy on Fri Jul 20, 2012 2:26 pm

Thanks everyone for the replies! Nice to talk to someone who has been through this too!

Just read my post again and didn't realize it was not clear that the appointment I waited 3 weeks for was the heme/oncologist. I did have him on a pretty high pedestal because he saved my son until yesterday when I got a big fat dose of reality.

I am in the Florida Panahandle. Any suggestions on the closest 2nd opinion with MGUS experience to me?

Just heard back from the scheduler and my CT,MRI and skeletal survey are all scheduled for Tuesday afternoon. Follow up for results is August 6. He is going to schedule the BMB at that appointment.

I have also e-mailed Dr. Landgren's assistant at the NIH about the study and getting into it. Hope to hear back soon but I did notice it took one person about 6 weeks to hear back so I am starting now.

Oh yeah. I am having difficulty telling family. Specifically my children ages 27, 24 and 22. My parents and the worst is going to be my 7 year old granddaughter whom we are raising. I don't know what to say. Any suggestions?

Thanks!
Angie

[Art]

Re: Not sure about my hematologist/oncologist

by Art on Fri Jul 20, 2012 3:48 pm

Angie
I told my kids after a couple Months. Ages 10,12,14 at the time. Also my Parents and other family members. It was tough on them all and worst on my now 11 year old. He talks about it almost every day. Sometimes I wish I never said anything because I really don't have multiple myeloma. Just SMM although they are smart and would be wondering what was going on and I don't like hiding things. All in all it's been good and we just take it in stride. at the time I was diagnosed and for Months after it felt like a Death sentence. But now I feel Blessed to only have SMM and feel for all the others here with multiple myeloma. This is a great source of info and Support. Moffit is fairly close to you isn't it?
Good luck
Art

[Eric Hofacket]

Re: Not sure about my hematologist/oncologist

by Eric Hofacket on Fri Jul 20, 2012 5:56 pm

If your current doctor's work load just doubled and you can find a doctor who specializes in multiple myeloma at a reasonable distance, I would not hesitate to switch. I see two doctors with the HMO I am in. One is a Hematologist/Oncologist who is close to where I live that I have also had the feeling that he is too busy at some of my appointments. He is not a bad guy, it just seems he does not have the time to closely follow my case and I have had to remind him at times about things we discussed in the past, such as the treatment plan, that he seemed to have forgot about. The other is the doctor who did my stem cell transplant and he is clearly more familiar with multiple myeloma, all the current treatment options, the side effects and how to deal with them, and what is coming up through clinical trials. He exclusively only does stem cell transplants for the HMO I have and this experience shows. His memory is very good, I seem him only about 3 times a year now but he remembers my name in the hall way when I see him and he clearly remembers my case pretty well. He seems to always be thinking one step ahead about what to do next. He is some distance from where I live however. Between the two of them I am pretty comfortable. Fortunately for me I do not seem to be in the 15% of multiple myeloma patients that have disease that is the most difficult to treat. If I were I would seek out the best multiple myeloma doctor I could find in my area for a second or third opinion. The challenge is that after being to several multiple myeloma symposiums either in person or over live internet feeds, there is often not clear consensus among even the best doctors in this field on what is the best treatment and what to do at different stages of the disease.

[Dr. Peter Voorhees]

Re: Not sure about my hematologist/oncologist

by Dr. Peter Voorhees on Sun Jul 22, 2012 3:24 pm

Dear Angiebaldy,

Many patients have paraproteins (M spikes) in the beta region, especially when the paraprotein is an IgA paraprotein. In fact, most IgA paraproteins migrate in the beta region.

I think you deserve a thorough work-up for your situation. I agree with appropriate imaging. also agree with a bone marrow biopsy.

Another opinion is always a sensible thing to do. In your area, there is the Jacksonville, Fla Mayo clinic group, Moffitt in Tampa and Emory in Atlanta. The NIH has a terrific program for patients with MGUS/smoldering myeloma as you have read in many testimonies on this site.

Best of luck to you. Let us know how things go!

Pete V.

[angiebaldy]

Re: Not sure about my hematologist/oncologist

by angiebaldy on Sun Jul 22, 2012 8:57 pm

Thanks Dr. Voorhees for your input. I feel more confident in my concern and decision to get a second opinion now.

I actually have already e-mailed Dr. Landgren's assistant regarding their MGUS Natural History study because I noticed from some posts here it can take several weeks to hear back from them and get scheduled. By then I should have all of my tests complete and know more about my status.

Thanks again for your help!

Angie