Me to mgus new to all of this

Hi everyone just got a mgus diagnosis and wanted to see if anyone could help me make heads or tails of all this info.
The doctor was really vague with his answer. I do know I do not have a lytic lession on the back of my head.
If someone could please help and not sugar coat anything thank you.
PATH

-1/4/21

FINAL DIAGNOSIS:

BONE MARROW, ASPIRATION AND BIOPSY:
- NORMOCELLULAR MARROW WITH TRILINEAGE HEMATOPOIESIS
- MONOCLONAL PLASMACYTOSIS WITH KAPPA LIGHT CHAIN RESTRICTION, PLASMA CELLS CONSTITUTE APPROXIMATELY 5-7% OF MARROW CELLS, CONSISTENT WITH PLASMA CELL DYSCRASIA (SEE DESCRIPTION AND COMMENT)
- MORPHOLOGIC FEATURES NOT DIAGNOSTIC FOR MYELODYSPLASTIC SYNDROME
- SEE GENETIC REPORT IN KP HEALTHCONNECT

COMMENT: Correlation with clinical, laboratory, and imaging features is suggested.

Chromosome

46,XY[20]

FISH

POSITIVE for the IGH-FGFR3 t(4;14) translocation (55% of isolated plasma
cells).

POSITIVE for monosomy 13/deletion 13q14.3 (28% of isolated plasma cells).

NEGATIVE for the following: deletion of CDKN2C (1p), gain of CKS1B (1q)
and/or gain of chromosome 1, gain/loss of chromosomes 5, 11, and 17,
partial deletion of chromosomes 5q (EGR1), 16q (MAF), and 17p (TP53),
translocations of IGH-CCND1 t(11;14) and IGH-MAF t(14;16).

1 Like

Hi @Curtis what I can do and would like to do is to really welcome you to our forum, what I cannot do is answer your medical questions. By the look of the length of them perhaps someone you are dealing with medically might be able to break them down for you, however you have now entered a parallel universe with a new language.
What I can reassure you about is that the length of information you have given is not necessarily in proportion to the severity of your diagnosis.
The Blood Cancer UK website also has a lot of useful information on there.
What we often seem to share on this forum is similar fears, feelings, thoughts, questions, symptoms and practicalities.
I certainly remember the feeling of complete shock, the isolation and feeling in a bubble with the world going on around me and it might be heightened for you as we are in Covid times.
Perhaps now is your opportunity to write down the questions you want to ask like what do these results mean and what are my options. Keep asking for clarification until you really understand and don’t be afraid of asking that follow up question to.
You might want to have a list of your symptoms, medical history, medications, allergies etc. to hand.
Monitoring might be an option and it is commonly called ‘active monitoring’ or ‘watch and wait’.
We are here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Please let us know how you get on.

Hi’ Curtis,
Im not regular contributor but do log on and browse a lot, today I have felt moved to respond to a couple of posts I’ve viewed. I note that Erica has already welcomed you and advised you about the parallel universe with a new language that you have found yourself plunged into.

It seems that patients are inadvertently sometimes given a diagnosis and then not always given sufficient information to explain the nature on the diagnosed condition. As you have illustrated you are left with medical information that you naturally cannot understand which serves to make matters worse even if they are not necessarily quite so adverse.

From my initial diagnosis of MGUS I have learnt that for my personal wellbeing I wish to know as much as I can about my condition and regular test results. This means asking all the questions that come to mind no matter how small (eg; what is MGUS) and if required write them down beforehand. If I’m told that my bloods are stable I ask for the individual results as, “stable at what levels” is now my immediate follow up question. I still leave my appointments and get frustrated with myself for not asking something I had intended, but the more I ask the more I understand and the less stress I feel.

From your test results and from what you have written its clear that you have a lot of things you wish to ask and discuss with your Specialist. The latter is best person placed to give you the answers you seek as general information although informative is simply “general” and does not necessarily apply to your medical circumstances.
Hopefully your next appointment isn’t too long away BUT if so phone up the Dept and ask to speak with a ‘specialist nurse’ and explain how you feel and your concerns.

Although you may not have got the answers you initially sought without the sugar coating (which I too dislike). I hope you’ve gained something positive and know that there are others that fell into this parallel universe with an MGUS banner too plus others with shared experiences who will take time to assist those such as yourself.

3 Likes

Hi @Curtis and welcome to the forum. It’s great to meet you and I’m glad you have felt able to share your questions and concerns, it’s all very overwhelming isn’t it and so frustrating when you have the need to understand but not the medical knowledge to make head more tail of results. @Erica and @Shaka have both given great advice. I think giving the support line a call would be really useful - if only to talk through questions you may want to ask etc. Please keep us updated and let us know how you get on. Sending extra special wishes your way :blush:

2 Likes

Hi @Curtis we all share your bewilderment when it comes to learning all of this stuff. If your lucky your consultant will explain everything but be prepared as others have said to ask the questions. I had absolutely no idea what to ask when I got my diagnosis for Myeloma and was left floundering by my medical team. I hope that you’re able to find the answers that you need but Blood Cancer UK’s information sources are excellent and were my first port of call once I finally got around to looking into this thing that they told me I had. Good luck and let us know how you get on.

3 Likes

Hi @Curtis we hope you’ve been doing okay since your last post on here? A very warm welcome to our forum community! :relaxed:

As our other lovely forum members have touched on, the main healthcare professional overseeing your care for MGUS will always be in the best position to give tailored advice specific to your personal circumstance, and interpret and talk you through what your blood test results mean.

Though we’d always thought we’d share with your our information sheet on MGUS: MGUS-monoclonal-gammopathy-of-undetermined-significance-fact-sheet-MGUS-0717.pdf (shopify.com) hope this is helpful to read through @Curtis and also supports you in your conversations with your doctor overseeing your care.

Take care and we’re always here for further support- do let us know how you’re getting on,
Su

3 Likes