Blood cancer for Dori

I also have gone in to get a bone marrow biopsy that was sent to Mayo clinic waiting for my answer on June 29th but I'm really worried and scared I'd like to have some idea what's going on and what to expect can anyone help me with this

Hi @dorioeo1964, it sounds like you are in the process of being diagnosed, possibly with a blood cancer. Currently, your doctor(s) are investigating 3 possibilities: Waldenstrom's macroglobulinemia, lymphoma, or multiple myeloma. You won't know what type of cancer until the results of the bone marrow biospy come back later this month. Do I have that right so far?

Of course you're worried and scared. That's normal. The waiting period is the absolute worse!

I know it's hard not to try and figure things out as you wait. Assess symptoms you might be having or read online what it might be. However, only the testing will definitely tell you what you're dealing with.

These next 9 days are going to seem really long. Right now, focus on you and things you enjoy. When you're mind starts churning with questions and "what ifs" and "why me?", then write down your questions. When you need to talk with others like @pmm @loribmt @heathermcfarland @gingerw who get it, just come back and share your worries with us.

Sending you a virtual shoulder to lean on.

@dorioeo1964 As @colleenyoung mentioned, the waiting can certainly be the hardest part of this all! Please be gentle on yourself while the days tick off to the 29th. It will be here before you know it!

Take a walk, do some journaling or crafting, do some cooking or gardening. Pick something that gives you pleasure, something that you can "get lost in".

Once you have more information, let us know and we will certainly be here to help you along.
Ginger

@dorioeo1964

I'm so sorry for what you're going through.

We can't put our arms around you, but we care. On this forum, 24/7/365, there is someone listening, someone who's been through it all.

When I am furious at the tricks my body plays on me, I drive to a lovely place, or I read a favorite book. Best of all, I spend time with my dogs.

What brings you comfort, dorioeo?

The mentors and moderators on here (i call them the guard rails) are wonderful and insightful. As much as possible don't let you mind (scary thoughts) take over and rule you. Hang tight, and stay on here the support and info is priceless. Hugs..........Jody

Dori...that's my wife's name, so I have to respond to you.

It sounds like you have a trilineage process going on. I'm sure you are getting the proper diagnostics, such as Bone Marrow Biopsy, Myeloid Panel (NGS) Next Gen Sequencing, and Flow Cytometry. They are ALL essential along with the advanced bloodwork (CBC-DIFF, CMP, Bone Marrow - DIFF, MAN-DIFF, Differential, Auto, Iron Panel, SPEP, Serum Viscosity, TBIL/DBIL/IBIL Panel, ACA, etc.

The Next Gen mutations/alterations and BM Exam Report narrow down the diagnosis (or plural) as a start.

That started me off and now we know I have three processes ongoing... Waldenstroms Macroglobulinemia (NHL), and MDS & MPN (Overlap)... The lymphoma side is straight forward. The myeloid disorder has two separate components... Myelodysplastic Syndrome (of a specific type) and a Myeloproliferative Neoplasm (a more "potentially aggressive" component). They call this an "Overlap". I asked "AI" how rare this "TRILINEAGE" is in America and it showed the calculations... "either 1 or 2 people in the country". I guess that's about as rare as it gets. Nonetheless, so far it is indolent and slow growing and they are treating one side to reduce those cancer cells, which improves my anemia and relieves the "burden that the malignant B-cells and bad Plasma Cells create for the normal cell development in the marrow." I'm very positive and optimistic because I always stay INFORMED of what is going on in my case.

I'm sorry you're going through this and I know the waiting is the hardest part. I was diagnosed with SMM in the beginning of May while on 25mg prednisone. I'll finally be on what is considered an insignificant dose for my next blood work on Aug 4 and get a more accurate diagnosis. Keep in mind that all three conditions you mentioned are treatable and treatments are improving all the time. I've never heard of any of those three affecting sense of smell but I'm no expert. Mine is usually affected by sinus issues, although I do have this weird thing where occasionally I smell cigarette smoke where I know there isn't any. I've had that for years, long before my SMM diagnosis. Hang in there and reach out to the wonderful people here. Group hug to all.

Hi! Was wondering if you were able to learn more about your test results, I know you had mentioned late June for when you may meet with your care team.
My first few biopsies showed myeloma, but according to my doctor, some things just did not add up right. These were possible signs of myeloma, but not probable. So he dug deeper, and following an excion biopsy of a few spots (a lymph node and a couple of soft tissue masses) it was determined that mine was NHL with plasma cell differentiation (where the plasma cells appear to be myeloma but really aren't). But then we had to determine what kind of NHL, either WM or marginal zone. It got whittled down to marginal zone lymphoma with plasma cell differentiation. Whew. I just finished my third cycle of the BR regimen this past week. Hoping for the best response possible!
My point being, after all that TMI, lol, is that it can take a frustratingly long time to sometimes to get an exact diagnosis. I would be nearly jealous of others that got their diagnosis within a few days! (I got that idea out of my goofy head, thankfully) It took over a year to pin it down to MZL, and I still have concerns some days if they got my diagnosis exact or not. But I know my care team put 100% into investigating for me and I had some of the best in the country working on my medical concerns. And they still are!! Take care, hope things are moving along for you.

@marcwall WOW. I have Multiple Myeloma and Amyloidosis but you have presented a lot of information I have never heard! Sounds like a lot of complexities! i agree we need to stay informed, but I also try to accept that I have limited energy as I go thorough 6 months of weekly treatment and try to rest in trusting my doctors. Some days I struggle to find that balance!

@mkd54 --- I'm so sorry that you have both of those challenges. Mine is complex but entirely more forgiving "at this point" than yours. Prayers are with you. Keep the faith and best of luck.