[hotinaz]

Feedback on blood lab results, planned treatment

by hotinaz on Tue Nov 19, 2013 12:31 am

Hi all of those whom may be suffering. Just got my actual diagnosis after having a bone marrow sample from hip, 24 hr urine, DEX and a ton of blood taken from me. I will list my readings below and would greatly appreciate feedback or comments.

I see a board certified oncologist here in Mesa, AZ. He wants to start induction treatment ASAP. He states I should not wait more than 2 weeks before starting and even he looked very worried while trying to explain things to me.

Here are my highest, way out of range readings:

Bun/creat ratio (QD) 9.4 low
Globulin (QD) 3.9 g/dl (says it is high')
Free Kappa light chain 5.58
Free lamda light chain 333.25 mg/l (says High)
Free kappa/lambda ratio 0.2 (says Low
IgG 303 mg/dl (says Low)
IgA 2296 mg/dl (very high)
Igm it just says it is below 25 mg/dl (very low)

PANEL OF PROTIEN ELECTROPHORESIS is shown below:
Protien total 7.7 g/dl
Alpha 2 Globulin 2.4 g.dl (says high)
M-spike 2.2 (M-spike has risen from 1.9 in Aug. to 2.2 in Nov.) HIGH
Gamma Globulin .5 (says low)

I am so new to this. I really don't like the large amount of meds I am suggested to take. However, I do want to fight this. They want me to start using Velcade (sub q. shot), Cytoxan, Dexamethasone , Prochlorpherazine, and cyclophosphamide.

If you are viewing this and can help ... I do appreciate. I am thinking of getting a 2nd opinion.

Thanks to all!

[NStewart]

Re: Feedback on blood lab results, planned treatment

by NStewart on Tue Nov 19, 2013 12:20 pm

First of all don't think of getting a second opinion, get one from an oncologist who specializes in Multiple Myeloma ASAP. Have you had a bone marrow biopsy? This is important to have done prior to beginning any treatment since it is used to stage your disease, check for genetic make-up, etc. A lot can be determined about your disease based on the biopsy that can't be done once you are receiving treatment. Insist on the biopsy. Since you are in Arizona, I would consider going to Mayo for a second opinion as soon as possible.

From what you have supplied for blood test results, it looks like you may be IgA lambda myeloma. You list an Alpha 2 globulin result. Might this really be the Beta 2 microglobulin level which is one of the indicators used for diagnosing Myeloma? Are you having any problems with your bones?

As far as treatment is concerned the Cytoxan and cyclophosphamide are the same chemo. I don't know what the Prochlorpherozine is. But, this sounds like an older treatment for Myeloma. There are newer less harmful drugs out there that are pretty much the first line treatment these days -
Velcade (Bortezamib), Revlimid (Lenolidomide), Krypolis (Carfilzomib), and another one that escapes me right now, but is a similar drug to Revlimid. Cytoxan is usually added when the newer drugs aren't working. Almost all of the regimens include Dexamethasone because it has proved many time over to potentiate the effect of almost all of the drugs used.

Call the IMF or the MMRF and ask them about blood test results. They have excellent literature about them and what tests are important to be done for diagnosis and on a regular basis for monitoring. They also can give you the names of Myeloma doctors in your area, although I think Mayo may be the closest to you. Really consider not starting treatment until all of these other things have been done. Don't let your current oncologist railroad you into something that you have questions about.

Good luck in getting what is best for you and in beginning this journey. We have all been in your shoes and we are all constantly questioning, reading, reaching out and living.

Nancy in Phila

[Wayne K]

Re: Feedback on blood lab results, planned treatment

by Wayne K on Tue Nov 19, 2013 4:15 pm

Hotinaz I would certainly follow the oncologist advice. I don't know enough to know if you have Bence Jones, but you have many of the symptoms I had and I do have it. I wouldn't delay treatment for any reason, it's the only chance you have of beating this down. treatment to bring you close or into remission and then a SCT seems to be standard now.
FYI, I'm 4 1/2 years from my diagnosis.

[Dr. Jason Valent]

Re: Feedback on blood lab results, planned treatment

by Dr. Jason Valent on Tue Nov 19, 2013 5:43 pm

In addition to the abnormal findings regarding M-protein, I assume that you also have one of the common criteria for initiation of therapy for "symptomatic" multiple myeloma. The criteria are: elevated blood calcium, kidney damage, anemia (low hemoglobin), or bone disease (lytic lesions on bone imaging).

If so, the regimen suggested to you of Velcade, cytoxan, and dexamethasone is very reasonable as initial therapy. It is usually well tolerated and highly effective.

I always encourage people to get a second (or third) opinion so there is confidence moving forward with treatment.

best wishes!

[Maria]

Re: Feedback on blood lab results, planned treatment

by Maria on Wed Nov 20, 2013 1:07 am

I live in scottssdale, I would advise you to start treatment, it sounds like cybor d, that was my induction therapy with a local onc, but I rec that you get a second opinion with a multiple myeloma specialist you can call the mayo I see dr Keith Stewart, he is wonderful.

[LadyLib]

Re: Feedback on blood lab results, planned treatment

by LadyLib on Wed Nov 20, 2013 1:27 am

My husband started the same treatment. From the treatment, in 4 cycles he went from 50% BM involvement to 2% and no sign of multiple myeloma in urine on last tests. So, he progressed well on the regiment. I wish you the best.