Anyone have to delay treatment until after cardiac procedure?

Posted by mcarre @mcarre, Jun 26 8:53am

Bear with me. A year ago I started Privigin infusion in hopes to raise my antibodies, how found is a story, so we will start there. I was doing well until March/April when light chains went from 800 to 1200.Kidney function looks good
No clear high calcium reported
No obvious destructive bone disease reported yet
Blood counts are not dramatically abnormal
SPEP shows no classic M-spike
However, since Bone Marrow shows 30-40% load my hematologist wants to start therapy of the four Revlimed, Darzalex, Velcade, Dexamethasone BUT, here's the problem. I have been diagnosed with Hypertrophic cardiomyopathy and cardio doctor thought we could wait until Dec to do a catheterization. Hematologist does not want that, she wants that first. My stomach is in such a know, anxiety so high that my primary has me on low dose anxiety meds. My body is worn out from the testing, and the "coup de grace" was a dental bone graft and an implant abutment fracturing. My question is, has anyone else had such a wait for the other doctor experience. I am 77 and this is surely not "my best life"

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

kansasjayhawk | @kansasjayhawk | Jun 27 8:15am

If you agree with the hematologist, tell your cardiologist you aren't willing to wait. If he won't do the procedure on your timeline ask your hematologist to find a cardiologist who will. You don't have to let your cardiologist dictate the timeline.

If he has a reason for waiting, ask him to explain why the risk of doing the treatment sooner outweighs the risk of not treating your other issue.

Lori, Volunteer Mentor | @loribmt | Jun 27 9:45am

Hi @mcarre Welcome to Mayo Clinic Connect. The DVRd Regimen ( Darzalex, Velcade, Revlimid, Dexamethasone) was recently approved to treat newly diagnosed multiple myeloma patients. I’m sure you and your hematologist would like to get this treatment underway.

The ‘fly in the ointment’ is the little setback with your hypertrophic cardiomyopathy and the delay in treatment for this heart related issue. Your hematologist would like this issue taken care of first before starting your DVRd. This is often standard practice with hematology drugs that any dental and other health related matters have been settled. Some of the medications may have their own possible side effects such as cardiovascular issues, water retention, heart rhythms, etc. Not saying that what you’ll be receiving will have any of those impacts, that’s just a general statement.

@kansasjayhawk gave the same reply that I was about to make…if your current cardiologist can’t work reasonably in this time frame with your hematologist, you might want to seek a referral to another cardiology specialist so that you can get your MM treatment underway.

I do have an article to share regarding the DVRD treatment for your MM that you may want to read about. This is from the International Myeloma Foundation (It’s a great source of info for MM patients)
https://www.myeloma.org/news-events/multiple-myeloma-news/dvrd-regimen
And also, since you’re new to Connect I wanted let you know that we have several members who also have Hypertrophic Cardiomyopathy. They share their stories, concerns and support in a number of discussions. Here’s a link to the search. Feel free to ask your questions with a new discussion or drop into any of the conversations.
https://connect.mayoclinic.org/search/
On a side note, relating to your implant abutment fracturing, what’s being recommended for follow-up treatment for you?

Lori, Volunteer Mentor | @loribmt | Jun 27 9:50am

In reply to @kansasjayhawk "If you agree with the hematologist, tell your cardiologist you aren't willing to wait. If he..." + (show)

Hi @kansasjayhawk You gave some sound advice to @mcarre regarding their dilemma with conflicting doctors. Thanks for dropping into the conversation!

By the way, Welcome to Mayo Connect. Since you’re new here, I hope you take the time to explore the over 80+ health related groups. Your first post was in our Blood cancer & Disorders group. Have you been diagnosed with a blood related disease?

kansasjayhawk | @kansasjayhawk | Jun 27 12:34pm

I'm currently undergoing evaluation for an mspike of 1.5 with a flc ratio of 6.44. It was discovered while evaluating a small intestine and pancreas issue that still hasn't been diagnosed. Endoscopy and biopsies Wednesday to learn more. It's causing immunoparesis, bone pain, abdominal pain, weight loss, and might be pushing things toward anemia due to malabsorption. Bone marrow biopsy was Wednesday this week and not all the results are back. Pet scan is scheduled for the 7th.

Colleen Young, Connect Director | @colleenyoung | 20 hours ago

@mcarre, have you heard about a specialty called cardio-oncology?

Mayo Clinic offers expertise in addressing heart problems (called cardio-oncology), potential or current issues. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

Like @loribmt said, it is standard procedure to have cardiac issues monitored and necessary procedures done before starting cancer treatment.

Have you been able to coordinate your specialists to get the care you need in the order that is safe and effective for you?

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