[MapleTree]

What to ask at next hematologist appointment?

by MapleTree on Fri Feb 19, 2016 5:26 pm

Hello,

I'm having my third round of blood test done in the past 9 months. My hematologist suggested I get full body x-rays and a 24 hour urine collection. I haven't done either of those yet. I have pain in my hips which improved greatly when I started drinking turmeric and ginger tea. I have fatigue which has improved since starting d-ribose.

These are my numbers:

Date: June 17, 2015

Quantitative IgG 931 mg/dL 700-1600 mg/dL
Quantitative IgA 914 mg/dL 70-400 mg/dL
Quantitative IgM 69 mg/dL 40-230 mg/d

Kappa Light Chain 475 mg/dL 170-370 mg/dL
Lambda Light Chain 107 mg/dL 90-210 mg/dL
K/L Ratio 4.4 Ratio 1.4-2.7 Ratio

Free Kappa Light Chain 3.95 mg/dL 0.33-1.94 mg/dL
Free Lambda Light Chain 1.20 mg/dL 0.57-2.63 mg/dL
Free K/L Light Chain Ratio 3.29 Ratio 0.26-1.65 Ratio

Protein, Total 7.9 g/dL 6.4-8.9 g/dL
Albumin 4.6 g/dL 3.5-5.7 g/dL
Albumin Glob 4.11 g/dL 3.20-5.00 g/dL
Serum Alpha 1 0.2 g/dL 0.1-0.4 g/dL
Serum Alpha 2 0.6 g/dL 0.6-1.0 g/dL
Serum Beta 2.0 g/dL 0.6-1.3 g/dL
Serum Gamma 1.0 g/dL 0.7-1.5 g/dL

Date: August 13, 2015

Quantitative IgG 1050 mg/dL 700-1600 mg/dL
Quantitative IgA 1080 mg/dL 70-400 mg/dL
Quantitative IgM 77 mg/dL 40-230 mg/dL
Kappa Light Chain 529 mg/dL 170-370 mg/dL
Lambda Light Chain 122 mg/dL 90-210 mg/dL
K/L Ratio 4.3 Ratio 1.4-2.7 Ratio

Free Kappa Light Chain 4.37 mg/dL 0.33-1.94 mg/dL
Free Lambda Light Chain 1.12 mg/dL 0.57-2.63 mg/dL
Free K/L Light Chain Ratio 3.90 Ratio 0.26-1.65 Ratio

Protein, Total 8.4 g/dL 6.4-8.9 g/dL
Albumin 4.6 g/dL 3.5-5.7 g/dL
Albumin Glob 4.26 g/dL 3.20-5.00 g/dL
Serum Alpha 1 0.2 g/dL 0.1-0.4 g/dL
Serum Alpha 2 0.6 g/dL 0.6-1.0 g/dL
Serum Beta 2.0 g/dL 0.6-1.3 g/dL
Serum Gamma 1.2 g/dL 0.7-1.5 g/dL

Pro El Interp - An accentuated beta band seen.
No restricted bands seen in the gamma region.
Immunofixation electrophoresis to follow.

These are my blood tests from my GP From February 2016:

M Protein (1) in beta 0.55 gm/dL (0.00-0.00) Normal
Gamma Protein Fraction 0.85 gm/dL (0.70-1.50) Normal
Beta Protein Fraction 1.33 gm/dL (0.60-1.30) High
Alpha 2 Protein 0.69 gm/dL (0.50-1.00) Normal
Alpha 1 Protein 0.18 gm/dL (0.20-0.40) Low
Albumin 4.9 gm/dL (3.7-4.7) High
A/G Ratio 1.6 ratio (1.0-2.0) Normal
Total Protein 7.9 gm/dL (normal)

Urine Protein: 14 mg/dL with no monoclonal spike

Hemoglobin 11.8 gm/dL (11.9-15.8) Low
Hematocrit 36.2 % (37.4-48.3) Low

When my regular doctor sent me off to the hematologist, she said "I'm almost sure it's nothing, but I just want you to have it checked so we know." Well, here I am 9 months later getting a third test with no answers. I have no idea what I have and now feel like I'm caught in a cycle of "wait and see."

I am debating getting the full body x-rays because of the pain in my hips which I've had for at least 7 years or more. I just don't like the idea of all that radiation.

I greatly appreciate any suggestions from all of you experts here! I've tried filtering through other posts over the past few months to learn, but I feel I should start asking my own questions here because I want to be in a knowledgeable place when I go back to the hematologist.

Thank you so much in advance for your help!

[Multibilly]

Re: What to ask at next hematologist appointment?

by Multibilly on Fri Feb 19, 2016 6:51 pm

Hi Mapletree,

Welcome to the forum, but sorry that you are dealing with this uncertainty.

You have a few different clues spread out across several different tests.

M-protein (aka M-spike) of 0.55 g/dL in Feb 2016
Elevated IgA in Aug 2015
Elevated kappa free light chain and elevated K/L ratio in Aug 2015
Low hemoglobin and hematocrit in Feb 2016

These results taken together "could" be suggestive of a monoclonal gammopathy such as MGUS. Your serum protein electrophoresis test back in August 2015 stated "Immunofixation electrophoresis to follow". Do you have a serum immunofixation test result from August 2015 or February 2016?

Also, do you know what your calcium and creatinine levels are from your metabolic panel test?

In my opinion, these test results taken together and the fact that your current hematologist hasn't been able to sort this out in 9 months would be enough to suggest seeking out a hematologist / oncologist that specializes in monoclonal gammopathies. I might therefore suggest seeing a myeloma specialist to first get his / her opinion on the test results thus far and have that person direct your next round of testing. If you let us know what city you are in, folks can make some recommendations on where to find these specialists.

Lastly, note that skeletal xray surveys are no longer the preferred standard for imaging when first diagnosing a monoclonal gammopathy. Whole body MRIs and PET/CTs (including low dose radiation CT) are now preferred for initial diagnostic purposes. A whole body MRI (if available to you in your city) would not incur any radiation exposure. I'm not sure how low-dose CT stacks up against skeletal xray surveys when it comes to total radiation exposure. In any case, imaging is a good idea and is something you really don't want to skip. A 24-hour urine test is also a good idea.

Hope this helps a bit.

[MapleTree]

Re: What to ask at next hematologist appointment?

by MapleTree on Fri Feb 19, 2016 9:58 pm

Thank you so much for your response. I am going to talk to my hematologist about the MRI because she only mentioned head to toe body x-ray. I am located in Chicago and currently going through Northwestern Medical Care.

Here are some other results:

Red Blood Cells 4.1 m/cu_mm (4.1-5.3) Normal Feb 2016
Hemoglobin 11.8 gm/dL (11.9-15.8) Low Feb 2016
Hematocrit 36.2 percent (37.4-48.3) Low Feb 2016

I actually found records from 1994 and my hemoglobin and hematocrit have always been low. These are my numbers from 1994:

RBC 3.9 low (4-5.4)
HGB 11.5 low (12-16)
HCT 33.9 low (37-47)
Creatinine 0.8 (0.7-1.5)
Calcium 8.5 (8.5-10.5)

I believe anemia runs on both sides of my family

Immunofixation Serum:
An IgA (kappa) monoclonal immunoglobulin is detected. Date: 2014

I don't understand this, but this is what it says in Immunofixation Serum Date:2016:
Monoclonal IgA Kappa Responsible Observer: (LAD) Date: 2016

2015:
Calcium 9.6 mg/dL (8.5-10.4)
Creatinine 0.62 mg/dL (0.51-1.17)

Thank you for any further insight. You have already been so helpful already. I'm so glad I didn't go get the x-rays done now that you have informed me about MRI.

[MapleTree]

Re: What to ask at next hematologist appointment?

by MapleTree on Fri Feb 19, 2016 10:11 pm

After doing some research I see that Dr.Jayesh Mahta is in the same building where I go for my hematologist. They are both with Northwestern Hospital. I'm wondering now if I should change my appointment to see him instead. I don't know why my doctor didn't refer me to him as they are all with the same hospital.

[Multibilly]

Re: What to ask at next hematologist appointment?

by Multibilly on Fri Feb 19, 2016 10:53 pm

There were some good things said about Dr. Mehta earlier on this forum:

"Myeloma specialist recommendation - Michigan or Chicago" (started Mar 16, 2014)

I therefore wouldn't hesitate to reschedule with him given your test results.

Your immunofixation test results further confirm that you have some monoclonal protein in your blood. But your key markers (M-spike, kappa / lambda ratio, etc) are all pretty small and could very well be in line with a diagnosis of MGUS. But only a doc can make this call.

If it is MGUS, note that most people with MGUS go through life none the worse for it and don't require any treatment. In fact, the chances of MGUS evolving into multiple myeloma are only about 1 - 1.5%/year.

Let us know how things turn out and good luck.

Last edited by Multibilly on Sat Feb 20, 2016 5:40 am, edited 2 times in total.

[MapleTree]

Re: What to ask at next hematologist appointment?

by MapleTree on Fri Feb 19, 2016 11:25 pm

Multibilly,

Thank you so much. I really can't express how much your assistance has helped me. I am going to call Dr. Mehta's office on Monday.

Thank you again and have a good weekend.

[Judedono]

Re: What to ask at next hematologist appointment?

by Judedono on Sat Feb 27, 2016 12:20 pm

MapleTree -

I live in Chicago also and I'm treated by Dr. Singhal at Northwestern. She is Dr. Mehta's wife and a multiple myeloma specialist. I do like her. I'm IgM MGUS and was recently also diagnosed with Sjogren's syndrome.

Good luck!!

[MapleTree]

Re: What to ask at next hematologist appointment?

by MapleTree on Fri Mar 11, 2016 4:08 pm

I went back to the same doctor for my follow up blood test. I am having some insurance issues so going to one of the other doctors wasn't possible at this time.

Approximately 7 months have passed since my previous test and my new levels changed a little:

IgG: 1010
IgM: 70
IgA: 1110

Kappa Free Light Chain: 5.06
Lambda Free Light Chain: 1.23
K/L Free Light Chain Ratio: 4.11

I had a bone marrow biopsy done this week. I feel complete empathy for everyone here who has gone though that.

My hematologist is meeting with me the middle of next week to go over the results.

I feel overwhelmed with anxiety. My boyfriend has been so wonderful and only has left my side to go to work and he has even taken days off from work to spend with me because of my state of mind. I just turned 47 and just met my boyfriend last year and now this is happening.

I want those IgA levels to stop rising and ideally come down. When I asked my hematologist what I could do, she said "nothing". She said the good news is that all of my other levels are doing well and my body is handling this well. So far my kidneys and blood cell counts are good.

I have been drinking turmeric and ginger tea which fix the joint pain almost 90%. I'm taking D-ribose for the fatigue, which has helped so much. I did acupuncture for a couple of months last fall and I'm returning to that this weekend. I meditate in the morning and go to the gym. I'm not sure what else to do.

I feel so sad for how my boyfriend, parents, family and friends are feeling - helpless and worried for me. I lived as a vegetarian for 23 years and now I am eating fish in hopes of it helping. I went off gluten a year and a half ago - lost weight and felt great.

I apologize for my diatribe. I don't have my results yet, but when I look at my numbers, I see that something is going on and it is frightening. Thank you to everyone who here. I greatly appreci­ate the help I've received.

[MapleTree]

Re: What to ask at next hematologist appointment?

by MapleTree on Wed Nov 30, 2016 8:52 pm

In February / March of this year, I had a bone marrow biopsy. My results came back at 6% with a diagnosis of MGUS / plasmacytosis.

Unfortunately I had to change hematologist because I had to change insurance. My previous doctor was not in this network. My primary care doctor gave me a stack of my records with all my numbers to take with me to the new hematologist.

The new hematologist isn't a myeloma specialist, but she is in hematology and oncology.

What should I ask or tell my new hematologist? I can't detect any changes in my health since last spring.

I get concerned because I'm pretty sure I'm in the higher risk group for progression since I'm IgA kappa.

Any advice is appreciated. Thank you!