Recently diagnosed with AL Amyloidosis: Any advice?

Good morning, @vmarra, the best thing that’s happened is that your mom is now in the care of Mayo Clinic. I know you’re in panic mode with this news and it’s understandable anytime there’s a diagnosis of a blood cancer. But your mom is in the best place to have this treated…and there are treatment options. So I want you to take a deep, slow breath and let it out. Your mom is in good hands.

What your local hospital missed is no longer relevant. It’s what happens going forward. Since your mom is at Mayo, I’m suspecting she’ll (and you) will have a consultation with a hematologist who will go over your mom’s current health situation, the diagnosis and the treatment plan. If it isn’t convenient for your mom to have the care done at Mayo, the Clinic is awesome with establishing and coordinating treatment at a local cancer center for your mom. I’ve had this happen and know it works smoothly.
This is a little information from Mayo Clinic’s site for AL Amyloidosis. https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178

Your mom is young at 60 and can have many years of life ahead. I was 65 when diagnosed with a very serious blood cancer called Acute Myeloid Leukemia…I’m now 68, cancer free and living my best life. Thanks to my team at Mayo-Rochester. So I want you to know there is hope for your mom. Mayo is a place of hope!

I’m also glad you found Mayo Connect. You and your mom are never alone here. I’ve found other discussions with members who have AL Amyloidosis. Whenever you’re ready here’s a link to some of those conversations.

Diagnosed with AL Amyloidosis. What can I expect?
https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/

Are you meeting soon with an hematologist/oncologist at Mayo? I’ll be sending positive vibes for good news. Please let me know, ok?
Which Mayo Campus are you visiting?

@loribmt You say my life is rarely boring. It that is true, it is only because I make so many screw-ups and goofs that I stay busy straightening out the messes. oldkarl

Hah. Whatever works, eh? 😂 You made me laugh out loud this morning.
I intended to tag you in this conversation about AL Amyloidosis. Happy to see you here so stay tuned as we see what the doctors have to tell this young woman and her mom. ☺️

“They say we learn from our mistakes. That’s why I’m making as many as possible. Soon I’ll be a genius!” 😂

This was so helpful. We met with Dr. Gertz and we were at Mayo Rochester. He has not yet gone over her test results yet with her. They were just done yesterday. I just looked at them. I’m not a doc but have engrained myself in any and every bit of knowledge I can find

Knowledge is power. You’ll find the doctors and the medical teams at Mayo are very approachable, open with their discussions and will do their best to educate you and your mom on her disease and treatment. They want their patients to have that power. Don’t hesitate to ask questions.

Here’s a link to some discussions in our forum regarding How to get off to the best start with a new specialist. You might find some ideas for questions you might want to ask.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

My husband and I, even after 3 years, are still blown away by our experiences with my team of doctors, NPs and staff. They spoiled us for anything else. I know your mom will be in excellent hands there.
Her doctor is one of the leading research specialists in Amyloidosis. Here’s his profile. https://www.mayo.edu/research/faculty/gertz-morie-a-m-d/bio-00077439

So take some comfort in knowing she’s at a great starting point for her journey! She’ll have excellent guides and care.
How’s your mom feeling emotionally?

I found Dr. Gertz for her. So I was so excited we got in with him.

Emotionally I’m not sure I think she tries to not show me she’s scared bc she’s my mom and has always been so so strong. But I can see her sadness, discouragement, and I try hard to keep her positive. She struggles bc she was so active and so independent prior to this and it’s taking from her so very quickly

Being a mom myself, I know that desire to protect our kids…at any age. But your mom is human too so she will have her vulnerable side and that’s ok! And it might be that stoic side of her that really helps get her through this.
It’s difficult to always look forward, especially in the beginning of a diagnosis…not knowing what’s to come. But she now has the best medical attention that she can get! So hopefully this recharges her sprit her a little and gives her a sense of hope!
And for you, being the caregiver is tough. I’ve been on both ends of that experience… a caregiver and then the receiver when I had my cancer journey. It’s an odd place for a mom to be. We’ve always been the one in the family who can’t take a day off if we’re ill, we keep plowing through. Your mom sounds a lot like me, I was completely healthy, hopping around like the Energizer Bunny. Then, just like that with the snap of the fingers, I was down for the count. After my treatment for my leukemia, I am 3 years out, in full remission with more energy than I’ve had in years! My initial odds weren’t the best but here I am! The goal is to never give up hope!
It’s going to take your mom a little time to accept this change in her life but she will adapt and see that it’s ok, that she can get through this return to a relatively normal life.

You are an excellent caregiver! Having found Dr Gertz…wow, that’s like winning the lottery. I hope your consult is soon…for peace of mind. Let me know, ok? ☺️. Hugs.

Our consult with Dr. Gertz
Was this past Wednesday. So just nervous and waiting to hear his thoughts and plan is.

Oh, I understand now. I knew you’d had the initial consult to meet with the doctor but wasn’t sure of the time line between appointments and tests. Waiting for the doctor’s call is stressful and nail biting time. I hope your mum get some positive news soon of a treatment plan going forward.

Stay strong and positive. Your mom sounds like an amazing lady, a fighter…she raised an outstanding daughter, just like herself. ☺️ Let me know what you two find out.

So discouraged and scared I’m going to lose my mom. WVU doc not “concerned “ with her edema or nt -bnp, triponin levels. They are sky high!! Dr. Gertz hasn’t called or anything reference results coming in from his tests but I figure he wants all tests which I understand . We still have 4 more tests to complete for Mayo and found out today WVU may not have the ability to do them . Blood work from WVU chemo treatment today shows literally everything high. 😭😭😭 and she’s gained 15lbs of fluid since last week. Chemo . Help! What do I do