Recently diagnosed with AL Amyloidosis: Any advice?

I want to encourage you to not lose hope. Going through chemo can have some side effects such as edema and it’s not unusual. However, if your mom is having any discomfort such as chest pains or difficulty breathing then it is a concern. Don’t hesitate to call the oncologist’s office any time if that’s the case. They would have a doctor on standby.

It’s important to get those final 4 tests done so Dr Gertz can complete his diagnosis and draw up a treatment plan. You’re concerned that WVU won’t be able to complete those. Most hospitals will find a lab that can run the tests if not available in house at the local hospital.
However, you can also contact Dr Gertz’s office and let them know. I’ve had tests that our local hospital couldn’t complete because some test require very sophisticated equipment and were sent to Mayo for processing, or to another lab in a larger city. It is done all the time.
There are occasions where Mayo sends specialty boxes to your home, which you then take to the local oncologist office or whomever takes the blood work. Then it’s overnighted to Mayo for processing. That was a weekly experience for me.
I know how frightening this can be. My daughter went through it when I was going dealing with my cancer treatment. We had some long talks and worked through the fear. It is what it is and we both felt my time wasn’t up yet. I don’t believe it’s your mother’s time either.

I think a good place to begin is to call the WVU doctor on Monday to see if they can find out if those tests can be run for your mom. You need a definitive answer. You can also then contact Dr Gertz’s office through the portal or calling the number provided on the consult sheets to get further instructions. I know for a fact that Mayo will do everything in their power to get this done for your mom so you can both move forward.
It’s important for you to try and decompress to relieve your stress. A good little exercise is to imagine you’re drawing a box with your finger. Draw up, counting to 4. Draw across, holding for the count of 4…then down the other side for 4, and hold for for as you go across. Repeat that box 4 or 5 times. It has an amazing ability to calm the breathing and clenched tummy muscles.
I’m here anytime you need me. If you could though, to make sure I get notifications, please click the blue reply button so your message is typed in the box of to what I’ve written. Then I get a notice. ☺️
I hope you can get some sleep tonight. Let me know what you decide to do. Hugs.

At my moms appointment at WVU (our local hospital) her doc said he would find out about the tests and let her know. But there’s zero sense of urgency it’s so aggravating. I’m going to call Mayo again Monday most definitely . Thank you for the decompression exercises. It’s just a lonely feeling and sad. I don’t want her to know I’m sad , I’m being strong for her.

I think busy clinicians can become pretty pragmatic and somewhat desensitized to the urgency and desperation cancer patients feel. It’s not that they aren’t concerned, it’s that they see the similarities in patients going through treatment, recognize symptoms or anticipate expected outcomes. They know when a situation is dire or not. But we as patients or caregivers feel that sense of urgency and get panicky.

We do always have to be our own advocates for the best health care. It is not out of the norm for you, in this case, to be making those frequent calls to keep that ball rolling for your mom’s next step in her treatment. So call both places on Monday. You’ll feel better having taken that step.

Make notes of what you want to say if you call, or if you contact through a portal take the time to compose your message ahead of time. Often there is a 300 word limit. It’s perfectly fine to be assertive to get these tests underway.

I wish I could reach through this computer and give you a huge hug. I hope you don’t mind my saying this, but I went through a similar situation at 65 with my daughter, who was 36 at the time of my diagnosis. She also wanted to be strong for me. But as her mom, I knew she was being stoic on the outside while crumbling on the inside.
It’s ok to let your mom know that you’re sad and scared for her and for the future. Now is the time to have these mother-daughter talks. It’s ok to be honest, to be vulnerable, to cry, to be angry, to express your feelings because if you open up, your mom will be able to as well. We all get so caught up in wanting to protect each other, it holds us back from being able to cope well with reality. It becomes easier to face things head on as a team, knowing what each other feels. My daughter and I have always been close and I suspect it’s a similarly relationship with your mom.

Truly, the most important thing you can do is to try and remain positive. “The only thing stronger than fear is hope.” I had an amazing nurse whisper that in my ear one night when I was at my lowest point. It had such an impact on me and I feel it was a turning point in my recovery. It gave me strength and my daughter felt the elevation of that statement too. It was powerful. I want you to use it as your mantra for your mom and for you.
This is a really rough time for you. Are there any siblings or an auntie, cousin, etc., who you can talk with? Sometimes having a family member can be very reassuring. ☺️

I would find another doctor. We had the same problem in the va. They weren’t concerned so we found a doctor at at a university hospital

Hi@vmarra, I just wanted to check with you to see how your mom is doing? I know you’re so worried about her. Have either of you gotten any news from her doctors regarding treatment?

Hey there! Ugh it’s been a nightmare. Symptoms are getting worse. Diarrhea , weight loss, major decrease in kidney function, just very stressed

Aw, I’m so sorry to hear this news and can sure understand how stressful this is!
I know you’re diligent in discussing this with her doctors. Any conversations with them on what treatment is next or why she’s not making any positive improvements? Is she still receiving chemo with no results?

She leaves for Mayo again this weekend. And her light chains have stayed the same so that’s good right. No increase

Oh, that’s a relief that she’s heading back to Mayo. I feel that’s her best chance for moving forward because from what you mentioned, her medical counseling at home isn’t very comprehensive. If you don’t mind, I’d reallly like to hear from you as her journey progresses. Is this for actual treatment to begin for her?

@vmarra Well, your family is starting off right. The first thing most Amy.. patients must learn is that very few local medical personnel and facilities have a clue about any form of Amy. The end up running the wrong tests (proBNP instead of NTproBNP, proBNP is almost useless.), etc. My clinic even took my 24-hour urine collection and measured only half of it. And my primary refuses to order the DNA because he "cannot cure all the diseases which might show up". Second, there are many bargain suppliers for your meds if you need them. Mail order, etc., if done right, is just as good as from the manufacturer. I now pay $40 per month for my insulin. Last, ANY form of AMY only rarely comes on by itself, and most forms of myeloma work with and support diseases and disorders which are not directly related to the AMY. I have both Gelsolin and Limb Girdle Muscular Dystrophy r23, which are almost identical but with some distinguishing markers. Anyway, welcome to the club, and take it easy. You will learn volumes about yourself, especially if you start watching the Mayo flicks about AMY. oldkarl