[inky100]

Am I relapsing?

by inky100 on Tue Sep 09, 2014 8:47 pm

Hello everyone,

I suppose I already know the answer to the question I am about to ask, but I'm going to ask it anyway. I know that no one can tell me exactly what is going on, but I was hoping someone could give me some insight and maybe a little encouragement.

My abnormal test results from my most recent CBC on September 9th from my local oncologist are as follows:

Hemoglobin: 9.2 (12.0-16.0)
Hematocrit: 30.5 (36.0-46.0)
MCV: 67 (82.0-98.0)
MCH: 20.2 (27.5-33.2)
RDW: 28.6 (11.6-14.6)
Platelet Count 78 (150-450)
Manual Neut % 30.0 (49-79)
Manual Lymphs & 47 (12-40)
Metamyelocytes % 4.0
Myelocytes % 1.0
Poikilocytosis 2+
Hypochromia 2+
Microcytes 2+
Anisocytosis 3+

On my last visit to my hematologist/oncologist at Vanderbilt in July, my iron was normal at 90 (50-175), although three months prior my iron was at 38.

Also in July, my IgA was at 547 (65-421), up from 415 in April. My kappa free light chains were 1.51 (0.33-1.94), and my lambda free light chains was 8.98 (0.57-2.63), up from 7.29 in April and 5.59 in January. The K/L ratio was 0.17 (0.26-1.65), down from 0.20 in April and 0.26 in January.

My normal numbers for hemoglobin used to be in the 12 to 13 range, but they started showing abnormal in January of this year at 11.6. My results bounced back and forth between 10.3 and 11.6 until August, when they dropped to 9.6 and have continued to decrease.

My platelets have always been normal until August. On the past three CBC's since August 11th, my platelet counts have been 73, 83, 78, all down from 172 on August 8th.

Here's the thing: I'm extremely exhausted most of the time, and even on my 'good' days, it don't take much to take me down. My heart seems to race a lot, and it feels like it skips a beat quite often. I have a lot of pain, and it seems to be increasing. I haven't had a bone survey since January of 2013, but my calcium was still normal at 10.2 (8.5-10.5) in July, although it was up from 9.6 in April.

My local oncologist said he could make me feel better energy-wise and started me on iron infusions. As of yesterday, I've had three treatments. So far, the only difference it seems the treatments have made are that the massive cramps I'd been having every night have let up -a huge blessing to be sure. Now, I only have them occasionally, and they are not so massive anymore. Another thing is that I bruise really easy here lately, and most of the time, I don't remember bumping into anything.

I'm supposed to have a bone marrow biopsy in Nashville in October. I'm guessing that will give them a better idea of what is going on. I've already had two stem cell transplants (2006, and 2012). Currently, I am not on any treatments except for the iron infusions.

I'm a bit worried because, lately, I've noticed that the exhaustion is turning into something more. I'm getting to where I don't want to get out of bed. I've noticed, too, that I'm becoming increasingly grouchy, although, normally, I'm an easy-going person. AND, I have never liked to stay in bed overly much. I haven't given in to my compulsions yet, but they are getting harder to fight. I'm not depressed, I'm just extremely tired. And, too, I guess I am a little bit scared. I don't exactly know what is going on, but I'm guessing I am relapsing.

Anything anyone can tell me would be greatly appreciated.

Thanks for listening, and God bless,
Mary

[Toni]

Re: Am I relapsing?

by Toni on Tue Sep 09, 2014 9:51 pm

Oh dear Mary, I'm no doctor, but looking at all your numbers and your overall sense of what's happening, it does appear it's not going in the right direction.

Is your local oncologist a generalist or does he/she specialize in multiple myeloma? I am also wondering about having a bone marrow biopsy sooner rather than later.

Additionally, has the doctor confirmed that you have iron deficiency anemia?

I think further study should be done to determine the cause of your anemia and your pain

Wishing for all the best. I am sure you will receive other responses as well.

[inky100]

Re: Am I relapsing?

by inky100 on Tue Sep 09, 2014 10:16 pm

Hi Toni,

My local oncologist is not a specialist. He's good, or at least I think he is. However, there was initially some debate between him and my doctor at Nashville about the iron infusions. Before the first infusion, I emailed my doc in Nashville and told him what the local doc said, and he said to go ahead.

And, although I have been told that I have microcytic anemia, no one has ever said that I was iron deficient.

I can't remember the name of the procedure, but I had an 'up-periscope' done last fall - it was normal. My bone marrow biopsy is scheduled for the 7th of next month. Hopefully, they can come up with something then.

Thanks for responding,
Mary

[Jonah]

Re: Am I relapsing?

by Jonah on Tue Sep 09, 2014 10:24 pm

Hi Mary,

Sorry that you're having to worry so much about the possibility of relapse.

I have a question. What's been happening with your M-spike? I don't see any information about it in the numbers you've provided.

Maybe it's just me, but it would be a lot easier to tell what's going on with your myeloma if you gave at least the most recent 3 or 4 test results for the key values for tracking your disease, such as your M-spike, free light chain levels and ratio, IgA, hemoglobin, and calcium.

Having a series of the last the results makes it easier to tell if the recent results are part of a trend, or just blips.

And all the other results, while interesting, can be distract you from focusing on the key results.

I'm really hesitant to comment much on these results without knowing more about the longer term trends.

Hope this helps a bit.

[NStewart]

Re: Am I relapsing?

by NStewart on Wed Sep 10, 2014 4:24 pm

You also don't note what your WBC is.

With the numbers that you posted, it looks like you are relapsing, but of course an m-spike might help to give a fuller picture. If you haven't responded to the iron infusions, it seems that that isn't the correct course of treatment. A shot of Neupogen or Procrit or Aranesp might be more appropriate to help to bring the WBC, Hgb and platelet counts up. Your fatigue is directly related to the fact that the Hgb is so low and you say going lower. Not good!

Does the specialist at Duke know what your current bloodwork is showing? If not maybe you could send the results to him. It sounds like your local oncologist needs more guidance for his treatment of your disease.

I hope that things become clearer and your treatment addresses the things that are happening and you start to feel better soon.

Nancy in Phila

[inky100]

Re: Am I relapsing?

by inky100 on Thu Sep 11, 2014 4:56 pm

Hello everyone,

Here are the test results that were mentioned that I should post. They are listed in order of month / year: July, 2013 (18 months post SCT); January, 2014; April, 2014, and July, 2014.

Past 14 months Jul'13 Jan'14 Apr'14 Jul'14

Kappa 1.62 1.48 1.47 1.51 (0.33-1.94)
Lambda 5.46* 5.59* 7.29* 8.98* (0.57-2.63)
K/L Ratio 0.30 0.26 0.20* 0.17* (0.26-1.65)
IgA 196 332 415 547* (65-421)
M-spike g/dL n/a 0.1 0.1 0.18
Hemoglobin 12.0 11.6* 10.9* 11.0* (11.8-16.0)
Platelet Count 220 312 305 155 (135-450)
WBC 4.4 5.0 5.0 4.8 (3.9-10.7)
RBC 4.75 5.13 5.04 5.31 (4.00-5.50)
Calcium 9.5 9.7 9.6 10.2 (8.5-10.5)
NT Automated ABS 1.56* 2.18 1.62 1.46* (1.60-8.10)
Total Protein 7.0 7.6 7.3 7.5 (6.4-8.3)
NEUT ABS 1.61 2.18 2.44 0.77* (1.60-8.1)

Results from my local oncologist for August 11, August 25, and September 8, 2014 are:

This year: Aug 11 Aug 25 Sep 8

Hemoglobin 9.6* 9.3* 9.2* (11.0-16.5)
Platelet Count 73* 83* 78* (150-450)
WBC 5.3 5.5 5.2 (4.5-11.0)
RBC 4.69 4.50 4.55 (4.0-5.1)

Thanks again to everyone for your comments.

Have a great day,
Mary

[Dr. Jonathan Kaufman]

Re: Am I relapsing?

by Dr. Jonathan Kaufman on Sat Sep 13, 2014 6:39 pm

Hi Mary, I am sorry it has taken me so long to get to this post.

I am worried about relapse based on your labs. I agree that the best thing to do is to perform a complete evaluation, including a bone marrow biopsy. It's probably ok to wait until October, but I think you may want to contact them to move it up. If it is relapse and you feel bad because of it, getting on treatment sooner than later may help.

I wish you the best,

Jlk

[inky100]

Re: Am I relapsing?

by inky100 on Sat Sep 13, 2014 9:46 pm

Thank you Dr. Kaufman and everyone else who has commented.

The other night when I made my first post, I was feeling really bad. I guess it must have shown. I apologize for that. Today has actually been a good day - the best I've had in a long while. I'm so very thankful for that!

My hematologist / oncologist is at Vanderbilt, and I trust him implicitly; but being so far away from him (2 hrs.) makes me feel like I'm out in left field sometimes. I don't like to complain too much, so, when I do see him, I don't really say a whole lot about my ills.

Not too smart, I know. I always worry that it's nothing, and I don't want to be like the little boy who cried wolf. And, aggravatingly enough, when I am in his office, my labs are never back -- not the important ones anyway, so we never get to discuss the current results face-to-face.

Anyway, thanks again to everyone.

Have a great evening, and God bless,
Mary

And, thanks to whoever it was who rearranged my last post and made it look professional.